Sparkly shoes and a dog on a string.

A new year

2010-01-16T16:49:00.003Z

It's been a long time since I've updated on here but I've recently been feeling it's time to write again. I stopped blogging Abby's progress because in all honesty the blog was causing me a big headache. I was reported to social services for neglect because I was giving Abby the minocycline, the fact that this was actually a prescribed medication from a doctor in the UK seemed so mean nothing, the problem was that it was prescribed for acne and not for fragile x. I'm still having a very hard time with the logic of that.

So, the upshot of it all was that Abby was taken off of the minocycline. She is pretty much where we were at the beginning now, we are struggling with her moods and behaviour. I'm not able to take her out alone very often now and sometimes life feels a bit grim again.

The respite centre didn't work out. We did try, I did a few visits with Abs which worked ok, she seemed to enjoy it and it looked as if it could work. Sadly it all went wrong when the school became involved. Abs was due to go from school for a few hours before I picked her up early evening. On both occasions the school put her on the wrong transport so she didn't get to go, this just plain confused her because I'd told her she was going in the morning. Then, when she was due to go for her first overnight stay I sent her in with her new little suitcase full of her precious things, I'd prepared her, told the school she was going from there and told the transport people so they could make sure she went on the right bus. And then I sat and crossed all of my fingers hoping that it went ok.

I got a phone call at 4.45 pm from the respite centre asking to come and collect Abby because she was inconsolably upset. The school had put her on the bus to come home, then, when the bus escort said that she thought Abs was supposed to be on a different bus the teacher realised she'd made a mistake and took Abs off the home bus, she put her back into the classroom for 15 minutes or so while whe figured out which bus Abs should be on. By the time they had got her on the right bus she was so confused and upset it was impossible to calm her. She'd been in the respite centre less that 10 minutes before I was called to collect her, by the time I got her she had a bruise on her head where she had banged it on the wall, her cheeks were bright red where she's been hitting her face, she had bites all over her hands and arms and her eyes were swollen from the tears. It took me hours to calm her. I was furious, it had taken me 10 years to get social services to agree to give us some respite care, it took the school a few moments of incompetence to mess it up. Abby will not entertain going back to respite, the name of the place is enough to send her into a major meltdown.

So, thinking that was that with the respite I wasn’t sure what to do when we got invited to their Christmas party. So, at first I just ignored the letter inviting us. A few days after the invite came I had a phone call from them asking me if we were going to go. The woman said, it’s not at the centre, it’s in a neutral place, there will be father Christmas and a few party games. I thought, it might be nice for Abs to go, she would see the people who work there in a different environment and hopefully if she enjoys it we might be able to work on her going to the centre with me for a few visits. So, I made a plan. I went and got Abby a new party dress, new sparkly shoes, pretty things for her hair, some jewellery and a little handbag. She loved dressing up at the wedding so much, she's always asking for a new wedding dress. I thought, perhaps she could wear her new princess dress when she goes to respite.

Party day came; I spent 3 hours that morning telling her where we were going and how much fun it would be. Ordinarily Abs isn't keen on parties; they are a bit too busy and loud for her, so I avoided using that word. I assumed that because this was a Christmas party for children with severe learning difficulties it wouldn't be too noisy or crowded for her.

Getting ready was all a bit stressful, but we managed, eventually. I got in the car, punched the postcode into the sat nav and set off. Got lost (stupid bloody tom toms). Got there, late.

I walked up the path of the golf club and thought, did I take the exit marked Wembley stadium by mistake? My ears were begging for mercy and I'd not even made it to the door. Never mind, I thought, they must have put the respite party at the other end of the building. I honestly couldn't believe it when I walked in and saw a sign (quivering) pointing me into a room no bigger than the average living room with Dave's mobile torture device up the corner blasting 'so here it is merry Christmas, everybody's having fun'.

Abs screamed and covered her ears, the baby shot up my trouser leg, I dropped the changing bag sending the contents flying. So, there I am on the floor trying to grab what felt like a dozen angry chimpanzees while grabbing a suitcase worth of essential baby items from under tables and between people's feet. A woman tapped me on the back, it was the woman who had done all of Abby's assessments for the respite. 'Hi' she said, 'I didn't see you come in, are you having fun?' 'Pardon'? I said. 'Are you having fun'? I lip read. 'not really' I mouthed back at her 'it's a bit loud', 'yes' she giggled.' Can they turn it down? Abs really can't cope with this'. 'Pardon'? she shouted 'Can you ask that idiot to turn that thing down'? I yelled. She just stared blankly at me.

And then we left. The whole party lasted 4 minutes for us.

I got all tearful in the car home which probably wasn't a bad thing to be honest because I probably needed to release some frustration. I can see the funny side now, even though I still feel like bashing my own head off the nearest wall over this respite thing. I can't see us getting an invite back anytime soon.

In other news, we now have a referral to the Michael Rutter centre at the Maudsley hospital which is a place where we might hopefully get some help with Abby’s medications and behavioural issues. The blurb on the website sounds encouraging...
“The National and Specialist Child and Adolescent Mental Health Services within the South London and Maudsley NHS Foundation Trust have a formidable reputation nationally and internationally. Clinical practice has thrived on mutually supportive links with the Institute of Psychiatry and with the Medical Research Council Child Psychiatry Unit. Staff are actively encouraged and supported to undertake research.

The Out-Patient Services treat children who suffer from autism, hyperkinetic disorders, developmental disorders with associated emotional and behavioural problems, children with antisocial behaviour, oppositional defiant behaviour, children with eating disorders, depressed children, children with obsessive-compulsive disorder, traumatic stress in childhood. We have a child and adolescent forensic psychiatry team, staff who specialise in fostering and adoption and staff who research and treat genetic disorders. The service is working closely with the Department of Health in developing a project to train foster carers.”

Our appointment is on January 26th although I might try to reschedule it for sometime in February when Frankie will be able to come with us, the thought of taking Abs there on my own fills me with horror to be honest, but if I have to, I will.

Anyway, that’s enough for now, I will carry on updating things as we go along, who knows, I may even get the Michael Rutter people to agree to let Abs go back on the minocycline, after all, it was the only thing we’ve tried to date which actually helped her.

2009-08-18T12:27:00.003+01:00

Well, we are back from the caravan. We had a lovely time despite the great British weather. It did rain, a lot, but with the help of a lovely indoor swimming pool and soft play area coupled with a child who loves being out in the rain it all worked out fine. Abby really didn't want to come home at all.

I'm currently in childcare hell though; I'm starting my midwifery degree in a few weeks and am really having a hard time organising childcare. The older Abby gets the harder it becomes. I've just had to pick Abs up from club today, her period has started and she is refusing to put on her underwear, never mind anything else. So I had a mad run up to the club to enforce the underwear rule and ended up bringing her home.

Abby is now on the contraceptive pill but I think we have hit a snag, the minocycline seems to be stopping it from doing its job, Abby is on a continuous pill so she shouldn't have a full blown period. I am going to have to choose between the two medications I think, right now the pill is winning because the whole monthly thing is just too much for any of us to cope with, she can't deal with wearing extra items in her underwear and I can't cope with the rest of it. I'm just really hoping the gynaecologist appointment actually arrives soon.

I've has a reply from Dr T, finally. She has discharged us from her clinic (shocking eh) she said that she did not want the responsibility of Abby being on minocylcine and Risperisdone because the two medications are counter indicated. This is news to me but there you go. I really do want to find a doctor who can help us though.

I've ordered Dr Mike's medication guide and honestly I'd highly recommend it. It's a great read and I've found it massively helpful. I am left feeling a little frustrated though both for us and Abby. I think there are lots of things that we could have tried perhaps instead of the medications she has tried. I can identify a couple of areas where we still need help despite the improvements.

Mood is definitely one of them; I suppose things may have taken a step backwards here. These past few weeks I have found Abby to be back into the mood swing pattern. She does get angry really quickly and although I am finding it really quite easy to get her to calm down and comply to my requests other people find it really hard. She just does not behave for others as she does for me. And this is a problem. Take today for example; I turned up at club to find Abby sitting on the floor of a shed really being in charge of the situation, she did have underwear on but no shorts or sanitary protection. So, I marched up to her and told her very firmly to get up and go to the bathroom, so she did huffing and puffing all the way. And, she got dressed. Now, I knew that I could drive away and get on with my work but as soon as I did all hell would break loose and Abby would be in the mother of all strops, things would be thrown and tears would be shed. There was no point at all in even trying. So, Abby went to the car and quietly we drove home.

I don't know what to do about this really. Obviously I can't be around Abby all the time; I do need to earn a living. I don't think I am particularly scary, I don't know what it is that makes me more likely to get the desired result from a showdown with Abs. I wish I knew, then I could teach it to her care givers and I wouldn't be stuck in childcare hell. I do tell people that sometimes they need to be firm with Abby and just plain tell her what she IS going to do with no ifs buts or fragile x about it. And people tell me that they do exactly what I do with no effect. It's all a mystery to me.

But, as I've said, mood is one area where I'm finding things a struggle again just recently and I'm not sure if its hormones or what it is but the problem seems to be here to stay. So, I do need to go back to the search for a doctor who can support us a bit with finding the best way we can help Abby, medication or behavioural therapy.

2009-07-27T15:45:00.002+01:00

I've not updated for a week or so (once again) but things have been ticking along just nicely. There really hasn't been much to report at all.

Having said that there are one or two things to mention. Firstly Abby is now on the contraceptive pill. Her periods were all over the place, it was getting to the point where she was bleeding one or two days a week and we were all struggling. So, I went to the GP one morning bright and early (before they had a chance to build up to an hour waiting time) and after a lengthy conversation with the GP decided to give the pill a go to try and regulate things a bit. She's been on them for a week now and she's not had a mini period since, so that's a good thing.

On friday last week I took the girls to Franky and Benny's for dinner. Abby chose the restaurant herself which was nice. But, when we got in there I could feel she was on edge. She kept saying, must not throw drinks, over and over. So, I thought it was best in this case to ask for drinks to come with the meal. She was clearly worrying about it and as waiting a few minutes for a diet coke is hardly a life and death situation I thought we'd just adapt to Abby. There is no point in spoiling trips out to restaurants for her by forcing her to conform to the normal way of doing things. So, from now on we will always ask for drinks with the food, hopefully Abs will then start to look forward to these trips rather than worrying about drinks being out of place.

Once the food came Abby was happy and she spent ages chattering away about all sorts of things she'd done recently. She didn't mind Jess being there at all and the fact that the restaurant was very noisy didn't seem to bother her one bit. I love that I now have the confidence to know that I can just take the kids for a meal out on my own, on impulse. I feel more like an everyday mum rather than an at home security guard.

This saturday coming is Abby's birthday and the day we take our trip to the seaside. Jess seems to be ok throat wise at the moment so we are preparing to go. Fingers crossed she doesn't have a flare up between now and when we get home. Abby knows we are going, she is making a list of all of the things she wants to do. The list obviously includes swimming (lots of it) but she also wants to go to a zoo, play with sand and ride a pony called Herbie (no idea where that comes from, I think the pony may need to have a temporary name change).

Abby has been at club this week, she seems to be happy and settled in there. I haven't had any comments about bad behaviour so i am hoping that it's all been good. I will ask how things have been when I go in later today. I'm still really in two minds over what to do with the whole childcare situation. I know I have to make a decision, and soon. But, that one keeps getting filed in 'tomorrow'.

As far as everything else goes, it's all as it was. I'm wondering if it's time to end the minocycline now, things are still fantastic compared to where we were, but the changes seem to have stopped so I wonder if the medication has done its job? I never really did understand how long this treatment was supposed to last so I've just been playing it by ear. I think I might keep on it during our week away but then stop in the following week to see what happens.

I've still heard nothing from Dr T. I would have expected another appointment to come through the post by now, so I can only assume she has dropped us from her clinic. The part about me dropping her clinic was edited from the letter in the end on the advice from a friend so the ball was left in her court. I wonder if she was just glad to see the back of us. I don't suppose I will ever know the answer to that one. But, at the moment we really are back out here on our own again with no medical support at all. Right now that doesn't seem like such a bad thing, because we were all wasting our time in the ADHD clinic, we will just have to wait and see how things develop with Abby over the coming months and try to get some help if we need it.

In other news

2009-07-15T00:37:00.002+01:00

The school holiday club have decided to let Abby go for 4 weeks out of the 6 which works very well for me. So, she will be there for weeks 1 and 2, 4 and 6. The two weeks in the middle she will be at home, which is great. For one of the two weeks we are going away for our little girl’s holiday on the west coast. I’m really looking forward to this. I’m really preying that we actually get to go, I’ll explain my worry in a moment.

I decided that because of the ridiculously short amount of time between club dropping the bombshell that they don’t want Abby there and the start of the holiday that it was better to beg and compromise rather than try to organise an alternative. I do have another club who are willing to take Abs but I need to spend a little time making sure everything is ok and that they have the resources in place for her. So, i will get on with that ready for the October break I think.

Abby doesn’t know that we are going away yet. I’m trying to leave it as late as possible before I tell her because she really doesn’t get on too well with the future, it’s now, please. So, i will wait until a few days before the trip to tell her. I think I will say we are going on a trip to the seaside. If I say holiday she will expect airplanes and Disney. A caravan in the West Country probably won’t cut it with her when she is thinking more pooh bear and sunshine.

Funnily enough though, this evening there was a show on tv about holiday homes from hell. I didn’t really watch it but from what I could gather these poor people had bought a place in spain but for some reason the government decided to bulldoze it to the ground. So, they ended up living on the land in this slightly decrepit looking caravan. Abby was really excited about the idea of living in a caravan though. She said, ‘ I want a caravan please, you can eat in a caravan, you can eat biscuits in a caravan’ So, although we have booked a much nicer looking caravan I hope that Abs will be very happy eating her biscuits at the seaside.

That is of course if nothing goes wrong. Jess and her tonsils are the problem. Jess has had tonsillitis for 4 months now. In that time she has been hospitalised twice with dehydration and raging infection. The poor thing is so very sick with it; she has only been in school for two weeks of the four months. It’s a situation that just can’t go on. We do have a hospital appointment to see the throat surgeon, but that isn’t until September. I am worried about Jess missing another bunch of school at the start of the new school year if things don’t improve. And, having seen her almost constantly pumped full of antibiotics it’s clear that this isn’t going to go away on its own any time soon. So, I have found a private doctor who will see her much quicker and will take these stupid tonsils out if he sees the need. We are just waiting for the medical notes to be faxed over to him so he can decide what to do for the best. I have a horrible feeling though that if he does decide on surgery it will clash with the holiday. Obviously it goes without saying that jess’ health comes first, but this is another reason why I am being cautious about talking to Abby about this trip.

I suppose the last bit of non news is an update on the Dr T situation. There is absolutely nothing to report there. I have not had a reply from my letter and therefore the meeting which was planned in clinic for yesterday didn’t happen. I asked her to reply either in writing or by telephone to tell me that she was happy for us to meet in clinic as planned to discuss the contents of both letters, hers and mine. I said that I would like the confirmation because it would be possible that she might feel a meeting with all of the care providers present would be a better way to resolve the issues.

Anyway, despite giving her two weeks with which to reply I haven’t heard a thing so I took that to mean that there was to be no clinic yesterday. The ball is in her court so I will just wait and see with that I think.

Normal service is resumed.

2009-07-14T23:26:00.003+01:00

I don't know about anyone else but sometimes, every now and then I feel the need to take a holiday from life. So, that's just what I have been doing for the last week or two. Everything got a bit too much for me to cope with for a while there last month and although at the time it seems easy to battle on and get through it, once things calm down a bit the stress tends to come out. When that happens I know the only way to deal with it is to prioritise what needs to be done and do only the very important things, like feed and water the kids. Everything else takes a back seat until I've worked through the tricky 'head stuff'.

Anyway, things are back 'on the up' so it's time to get on with things again.

I have to say that Abby has been a total star really this last week. She hasn't reacted to my slightly less smiley face in a negative way at all. That said, I do try to paint on a smile when the kids are around so they don't see mummy sad.

Things with Abby are pretty much where they were a couple of weeks ago. Her language is still improving, her choices of words seem to get more refined every day. Hardly a day goes by when I'm not surprised by a word she uses or the maturity of a sentence.

Actually, while I think about it for the past two days Abs has come in from school and offered the information about her day. Yesterday she kept saying I've been gargling. All sorts of things were going through my mind, what on earth has Rosie been having the kids doing in school today? Gargling. Then, casually over dinner Abby mentioned gargling with mud. Now, this could have led to an uncomfortable conversation with the school. As much as I support the education program they have in place for Abby and would never ordinarily interfere I do feel that making the children gargle mud is a bit off the mark. Then it hit me, Abby had been gardening. So I said, oh you mean you’ve been gardening today ‘that’s what I said, gargling’ Abby replied. I stood corrected.

This afternoon Abby came running through the door and said ‘sports day today’ ‘I did running and walking’. This has been the first time in her life that Abby has offered information about her school day with no prompting from me at all.

So, things seem to be steady here at home, much as they had been but with continued improvement in Abby’s language and communication. Her mood has been stable still no major meltdowns at all in what must be two months now. Abs has the odd little mood as I’ve said before but we really don’t get the screaming and shouting like we did.
So, I was pretty surprised today when I had a phone call from Abby’s teacher asking if I’d stopped the minocycline. She said that Abs had been really angry and upset in school this past few days and it was almost like the Abby of old. She did say that the anger passed pretty quickly but even so, it was enough of a setback for her to want to ask if anything had changed.

We did have a few days last week when Abby didn’t have her medication. I was waiting for a new prescription so I couldn’t get the medication until I had it. I’m not sure if that would be the cause though. It might just be that things are really out of routine for Abby both at home and in school. The end of the school year means lots of things are different, sports day, less structured classes and general winding down for the year.

At home, Franky is away again which I know is hard for Abby to understand and she misses him. Robbie has gone to stay with his friend for a little while, he is trying to spread his wings and become grown up, I think he’s testing the moving out of home water a bit. I’ve been a little gloomy too which obviously won’t have helped. So, when you look at it all on paper it’s no wonder there have been a few little anger issues recently. I’m amazed there haven’t been more actually.

The update at last

2009-07-01T23:26:00.001+01:00

And now for the long awaited progress report.It’s taken me forever to get this from scraps of paper onto the computer, in fairness I have had mother nature prematurely cremate a perfectly good computer this week so I will run with that excuse if that’s ok. But, note to self ‘make better notes to self when doing science things.

So, what were we measuring?

Language
Anxiety
Repetitive behaviours
Mood swings
And
General cognition.

Ok Language.
Abby is definitely constructing better sentences now. She is expressing her needs in a much more refined manner than just yelling single words when she wants something. Rather than yelling ‘drink’ in the style of father Jack Hackett(from Father Ted) she now tends to ask using a sentence such as ‘ mummy can I have a drink’. She is using a lot of little words now to pad out her sentences but she is also using a lot of new words too. There have been a few times over the past couple of weeks when I’ve mistaken her speaking to me, thinking it was Jess.

I am asking her every day about her day in school and what she did. She is telling me much more often now, although she does still refuse to answer quite regularly too. I think a lot of this comes from the school day being over and in its place, where I don’t really belong so have no need at all to talk to her about it.

Anxiety – Again much the same as it has been over the past month, which is great because I am really starting to believe now that things have actually changed in her brain. It was difficult for me to trust everything I reported so early on in this journey. Part of me was a little sceptical, after all even when medications she has been prescribed from Dr T seem to have worked, we find the huge benefit we see in the very beginning soon wears off. I suppose there is a period of time on a new medication when it makes her a little ‘doped up’ for want of a better phrase. I remember taking Prozac for the first time some years ago and feeling as if I were watching life from the corner of the room. I felt spaced out and of course this made me behave differently, so I am guessing when Abby has started certain medications the calming effect we see could just be this phase.

Having said that, of course we can now say that the risperidone is helping because of the problematic behaviours we saw again when we reduced her dose.

But, honestly, nothing to date has given us this more mature level of anxiety. I use the word mature because when I think about everything we have seen change with Abby this past 5 or 6 weeks I think that word sums it up. Everything seems to be more mature, it’s as if she has grown up from a toddler to a child almost overnight. I find myself explaining things to her in a more grown up way and am now met with some degree of understanding, especially when I am talking about abstract things like emotions. Previously this sort of conversation would be like trying asking her to read ‘A Brief History of Time’ in Chinese.

Anyway to sum up the anxiety levels I can only say that they are minimal now, she does still get anxious sometimes, but this much reduced and even then she calms very quickly now. She is even finding ways to calm herself. She got a little upset the other day because I had the vacuum cleaner out, so she went and found my ipod and listened to that (she calls it the sky god). Trips out are much easier. A week or so ago I took her and the other two girls to the local shop to pick up some things for a school trip Jess was going on to France and Germany. Usually just having jess in the car would spark a monumental explosion of anger, I’ve no idea why, she just likes to do things with just us two and the baby, which is a bit sad for Jess really. Abby was edgy and not particularly happy to have Jess there but we did get around the store and managed to get everything we needed without incident.

The mornings are still beautifully calm 90% of the time. We have had 2 or 3 days of shouting when the bus has come but seeing as it was every single day almost without fail I honestly can not believe the change here.

And, we have still not had one single meltdown since day 3 of minocycline. I think school may have seen one or two but from what I can gather these are much rarer now and Abby does calm quicker than she did.

Repetitive behaviours are very much reduced too. Abby still uses repetitive language quite a lot, I think the majority of that is habit though rather than need. She certainly isn’t physically repeating behaviours nearly as much now though.

Mood swings – Abby has moods from time to time, sometimes she is happy, other times she is grumpy but pretty much always I can pinpoint exactly why she is in a mood about something. She doesn’t go from high to low in 60 seconds now as she was doing previously. Something which has just this second occurred to me is just how well she handled last week. I had a pretty rough week and I am quite sure that all of that had an effect on how I interacted with the kids. I’m not a shouty person at all, but I’m sure I was stressed and had a more limited level of patience. Ordinarily one tiny hint of stress in my voice will spark a violent mood from Abby. In her world everyone should be laughing and singing as they skip through fields of daisies no matter how much she provokes them. So, the fact that I can’t think of a violent outburst or a dramatic mood swing from her goes to show me that she is coping with other’s ups and downs much better now.

Just a few weeks ago I was feeling that the next step with medication would be some sort of an antidepressant to level out her moods. But I really don’t feel that we need that anymore and there is the proof for me. If things really weren’t any better I would still want to try another medication to help with this, but I don’t. I feel we are now living with a perfectly normal adolescent young lady, of course they are moody and grumpy, her hormones are raging after all. I don’t feel it’s any worse than what anyone else goes through though with a non FX child.

General cognition is still a bit of a slow burner. Well, I say that based purely on project alphabet which I have to say is slowly driving me a little nuts, I am getting bored to death with the ABC book and cards but we are plodding on. Abby can now recognise 17 of 26 letters and does recite the alphabet reasonably well, the problem is that she now bursts into the ABC song as soon as we start so I think a lot of that is her learning the tune and the letters are a side issue.

Moving away from that though, the fact that she understands much more complex language, and that she is following instructions better is all a part of this category. I can now ask her to find me something with two or three instructions in there, such as. ‘Abby, please can you find me the hairbrush; it is downstairs in the office on the shelf next to my computer’. And, she will come back with the hairbrush. If for some reason she can’t find something she will go and look, then after a while will come back and say ‘can’t find it’. The old Abby would have either completely forgotten what she was going to get, even if she understood in the first place. Either that or she would have had a screaming and shouting episode because she hasn’t got what she is looking for.

So, there we have the update on where we are right now. I’m still not sure how long to keep her on this medication, I suppose we will carry on until it seems as if nothing is changing.

2009-06-29T23:25:00.000+01:00

The weekend has been and gone and was pretty uneventful, well, unless you count my computer being struck by lightning, it didn't survive.

Abby had a lovely weekend playing in the sunshine, and the rain. She loves to stand outside during a downpour; she stands like a star with her arms stretched wide open catching the raindrops in her hands. She faces towards the sky to get the rain fall on her face. I must go and join her one day, it does look like fun.

Abby made me cry tonight. I witnessed the most beautiful moment and I will try to put into words how emotional it all was.

Frankie is home for a couple of days before he jets off on a US tour. He was touring Europe for the past 5 weeks so Abby hasn't seen much of him and I know she really does miss him when he's gone.

She said 'here's daddy' one or two times today, but she often does that. I think she is mostly talking to the baby when she says it because she always calls him Frankie. But this evening just before bed she was chattering in her chair, looking through a bunch of family photos. I was enjoying hearing her remember some lovely times we've had, during holidays, our wedding, a trip to the zoo. But suddenly she became quieter and fidgety. She looked very thoughtful for a moment before she jumped up and went over to Frankie to give him a hug. That in itself was lovely because she very rarely spontaneously hugs anyone.

I said, 'ahh Abby, that was lovely, are you happy to have Frankie home?' She said 'yes, my daddy is home' and then tears welled up in her eyes and she said 'I love my daddy'

And I was a mess.

I've never seen her express feelings like that before. She has been able to say 'I'm happy' or 'I'm angry' but never has she been able to say and understand an emotion like love. And, I am in no doubt at all that she is fully aware of what she was saying and feeling.

I will never forget this evening for as long as I live, it was one of those life memories we cherish. And once again my beautiful little girl has shown me that the simplest of things, a few little words, can undo a whole nightmare week full of stress and worry.

I just hope our Abby knows just how much her mummy and daddy love her too.

Now I've calmed down

2009-06-26T14:32:00.000+01:00

I will not be stopping the minocycline and I promise I will do a full update on all of my findings over the weekend. It's been a funny old week, we've been attacked from all angles but I know that I am doing what I can for my daughter and I will carry on doing so until it's no longer in her interest.

Abby is what counts here and I'll be darned if I am going to let anyone stand in my way of doing everything in my power to help her.

My reply to Dr T

2009-06-26T14:31:00.000+01:00

I am writing in response to your letter dated 08/06/2009.

Firstly I would like to say I am a little upset that a meeting has taken place without our knowledge. As you know we requested a meeting with all of Abby’s care providers present some months ago but this never came to fruition, so hearing that you have gone ahead with a meeting without us being informed is in our opinion wrong.
Now, to talk about the minocycline. It is true that we have been giving Abby this medication for the past month. I will explain why. We have been coming to your clinic for close to 3 years now, during that time you have made numerous recommendations, from a consultation at Great Ormond St, a referral to a centre who can look closely at Abby’s behavioural issues, a visit to the gynaecologist and of course the meeting with all of the professionals involved. To date, not one single one of these things have happened. During our last visit you advised that we take Abby off of the respiridone all together. We were happy to give this a go to see if there was any benefit to the medication. We reduced the dose and within a week Abby returned to her very violent behaviours. The day that school informed us that she had thrown a chair across the classroom before climbing out of the window told us that the medication was helping and we put her back onto the normal dose.

But, as you know we are still having many problems with coping with a lot of Abby’s problems and we became quite desperate for some help. I began to feel that the visits to the ADHD clinic were a waste of time. I mean no disrespect, you have helped us, particularly with prescribing the respiridone, but as all of your recommendations and referrals come to nothing we felt as if we had come as far as we could go with your clinic.

So, I have been spending a lot of time trying to search for someone who specialises in Fragile X and autism. I cannot and do not expect you to have a full knowledge of every disability and condition you treat, so I felt the time had come to seek out someone whose speciality was fragile X. My research led me to FRAXA (information enclosed). I spent a very long time researching what treatments have been under trial and are currently under trial to help people with Fragile X. Sometimes just seeing that work is being done and there is hope out there is enough to get parents through another day, when times are bad. Frankly, it’s all very well for doctors to say, stop the medication, see how you get on, and I’ll see you in 4 months. When your lives are consumed with this 24 hours a day, a week can seem like an eternity, sometimes parents have to be proactive for their own sanity because no one is there to help with day to day life, we have to find the way to get through it.

So having discovered the minocycline research and the reports I felt that this was something we wanted to try. A visit to the GP was pointless. I have come to realise over the years that parents are barely listened to, we don’t have a medical qualification and therefore have no business in interfering with medical matters. Obviously at this time minocycline is not indicated for use in patients with fragile X syndrome and therefore will not be prescribed.

However, I did contact Michael Tranfaglia MD and listened to what he had to say. He said that he would be very willing to advise Abby’s doctor by way of telephone or email to make recommendations for treatment based on her history. I was excited about this and wrote a letter to you requesting that you please take him up on this offer (something we would be paying for financially). But, I received no reply. So, I went ahead and found a medically qualified doctor who would prescribe minocycline for Abby. I am not prepared to divulge who this is, as I pay for this service privately I feel that this is entirely between me and the doctor concerned. I am prepared to take on the backlash and do not want to compromise anyone else in the process. I have made no secret of the fact that Abby is on this medication, I have made school and everyone else who has regular contact fully aware of the situation. I have even been writing a blog on the internet which is open and available for anyone to see. I have given the web address to the school and am very happy for anyone to follow the progress.

Going back to your letter, I am very upset that you are suggesting that I would simply purchase a medication from the internet, from an unknown source and give this to my daughter. I would never give a child any medication that was not prescribed and collected from a UK pharmacy. I am horrified that you are suggesting otherwise. Once again, had we been invited to the meeting you would not have been left to make these accusations and assumptions.

As far as monitoring is concerned, I am sourcing a UK based blood testing unit to have Abby’s liver function tested. I have approached my GP to request this, once again this is something we will be paying for outside of the NHS. However I would like to make the point that we would have 100% welcomed the support from the NHS as far as help and advice goes with monitoring. We have been left no alternative but to find our own way through the systems in order to do something to actually help our daughter. I am aware of the potential for toxic reactions to minocycline but I am also very aware that respiridone and other medications you have prescribed have the potential to be far more toxic and the frequency of side effects are far greater than with this antibiotic which has been prescribed to millions of children worldwide for over 50 years.

We have found that there have been massive improvements in all aspects of Abby’s problems since starting minocycline and regardless of how the medical profession here in the UK might feel are very pleased we embarked on this. I am saddened though that we are now being attacked from all angles and our care of Abby is being called into question. Perhaps one day if this becomes a mainstream treatment and it filters down the years into the little black book of medications it will be recognised that sometimes parents have more time and resource to research a disability that affects them and they might be listened to.

As far as Abby’s periods go, I do not recall anyone asking me how things are in that regard. I have not said that things are fine and dandy and Abby is coping well. Who has given you this information? I would like to invite that person to spend a week here during Abby’s period to see for themselves how she struggles with the personal hygiene aspect of it. So, for you to suggest that nothing needs to be done there is once again ill-informed. Can I assume that there will be no appointment with the gynaecologist seeing as we haven’t had any hint of a letter to date from that department?

I have included in here all of the information I feel is relevant to Abby and minocycline. I look forward to attending at the next appointment in July to
a) receive a formal apology
b) fully discuss the contents of his letter and update them on Abi's current condition
c) discuss whether there is any merit in continuing to attend the clinic as there appears to have been a breakdown in trust

Kind regards

What meeting?

2009-06-26T11:55:00.000+01:00

I've had a letter today from Dr T.

many months ago during one of our fruitless meetings it was decided that we would have a meeting, the doctors, the school, social services and ourselves. We requested this because we were having all sorts of problems with Abby at home, school were also having some major and disruptive problems and we felt the best way to go forward was to get together and discuss exactly what we could do as a team of people. I was also feeling that although medication is one avenue that there should be a therapy program in place to help teach Abby how to deal with her emotions and problems in a better way.

I did try to organise this meeting but it never happened, it seemed that this was another of Dr Ts wasted breath exercises.

So, fast forward a year to today. My letter reads:

We are writing to update you on the outcome of a professional's meeting with the school, health and social services, mainly to see how best to support Abby in school and also to have a better understanding of Abby's difficulties and an update on her progress. We are pleased to hear that things have settled better since the last time we saw Abby in the ADHD clinic, and that was quite pleasing to hear. I presume she is completely off risperidone now.

We were informed by school that Abby is now on minocycline, which is a tetracycline, and we are quite concerned about this and need to gather more information from you.

1) we need to know who prescribed minocycline and what the indications for taking minocycline is and how long you plan to give her the minocycline.

2) we also need to know what form of monitoring is available for Abby on the medication. As you know the medication does cause a lot of problems and can cause liver toxicity as well.

3) we felt that if the medication is being purchased on the internet, then this was not advisable because we never know what medications are being sold online and it would be preferable for Abby not to be given this medication.

4) we advise that Abby should not continue on this medication.

The other things which were discussed were Abby's periods. I know we did discuss this in the ADHD clinic when you saw myself and Dr M and the plan was to refer her to a gynacologist which I have done. I understand that Abby is now doing well and adjusting to her periods and has not had any major concerns. We feel at this point things are more stable for Abby with regards to her periods and it is better to stay off using any medication for Abby now as we know that the medications have side effects and may cause more difficulties for Abby now. In the meantime I hope you are still able to have a review with the gynaecologist and we do look forward to hearing from you soon.

Thank you

Dr T.

First of all I am pretty angry that this meeting went ahead without us being informed or given the chance to attend. Especially seeing as we were the ones who pushed hard for it to happen in the first place. Perhaps if we had of been given this opportunity there wouldn’t be so many glaring errors in the letter.
So, let’s address the points made.

Firstly I am not going to say who prescribed the medication, but it is a medical doctor who has a bit of common sense. The reason that I won’t say who it is, is purely because of the backlash I am feeling about giving my daughter a simple antibiotic and i would never wish to cause anyone any professional problems for prescribing something which isn’t indicated in the age old text book for Abby’s disabilities.

As far as monitoring goes, well, wouldn’t it be lovely if I had this support. All I can do is treat the medication with caution and watch closely for any problems. I am looking for a private blood testing facility so I can have the tests done to ensure all is well. But honestly, is it really my fault that the medical professionals don’t allow parents to arm themselves with reams of research papers and take advice from the world’s leading Fragile X pharmapsychology organisation, the people who really do know what they are talking about. Is it my fault that despite all of the reasons to try a simple antibiotic to potentially help Abby that her health care providers close the doors and refuse to entertain the possibility of doing something to actually help Abby? Have any of these people taken the time to read a bit about the child in their care and to look at what’s new and potentially helpful? Or do they rely on just churning out the same age old (toxic) medications because that’s what’s in their little black book. Was she prepared to work with Dr Mike? To listen to his recommendations herself? No, she wasn’t and nor was anyone else.

This medication IS NOT being purchased from some dodgy pharmacy in some far away country, the prescription is posted to me from a licensed doctor here in the UK and I collect the medication from my local pharmacy. Does anyone honestly think I would buy medication on the internet to give to my child? The thought of that sickens me as much as if they were suggesting I purchased heroin from a street dealer and gave Abby a daily fix.

Abby is still on respiridone and if anyone had bothered to ask I would have told them that reducing the dose saw a return of some of Abby’s worst violent behaviour, reported by both myself and the school. So, we put her back on her usual dose much to the relief of everyone involved. The problems went away so we have to assume that the medication is helping. I will not stop this on the advice of an ill informed doctor who hasn’t bothered to gather the facts before making these recommendations.
Of course we haven’t had an appointment with a gynaecologist and don’t expect to, nothing that Dr T ever recommends ever happens. Who on earth is she to say how Abby is coping with her periods; no one has bothered to ask me how things are in that regard.

I’m not having a good week. Today once I have calmed down a little I will be writing to Dr T and everyone else concerned to voice my opinion.

I suppose I will be having social services turn up again and accuse me of all sorts of wrong doing. I’m going to have to think about taking Abby off minocycline now until things settle down which is such a crying shame, things were going so well. Doesn’t it go to show that none of these people really care about the child concerned if they will force her to come off the one thing which has actually helped her.

Hopefully though we will get through this, we are planning on one day moving to the USA and honestly I think that the sooner that happens for the sake of my children the better.

2009-06-24T12:19:00.000+01:00

So, today is another day. The pity party was yesterday, today is the emotional hangover but it's time to get up and get on with life.

So, the plan of action today is to find somewhere for Abby to go during the school holidays. I did consider dropping out of working life and dedicate myself full time to the running of the kids and the house. But, I do honestly think it's in everyone's best interest if I have a career and a life out of the home. Don't get me wrong, I'm not one of these power dressing corporate career women, far from it. But, I do need to keep my mind active and engaged. I am currently about to embark on a new career as a midwife and I don't want to let go of that unless it's totally unavoidable.

As well as my needs, which let’s be honest a mums needs do come pretty far down the 'needs' pecking order in every household, Abby gets a lot out of socialising with mainstream kids for the holidays. She does enjoy being around them and she learns how to play new games. She doesn't really play with them as such, she tends to do her own thing alongside them. Having said that, just recently I have seen her be an awful lot more sociable with the local children, the other day the kids were having scooter races on the pathway next to the house, it was wonderful to watch her actually join in with a game. It does still feel like a kick in the gut when I think that some of the neighbours feel that Abby shouldn't be out playing with the 'normal' kids. Somehow because of her disabilities she should be a prisoner in the house, not seen and not heard. Well, I'll be damned if I am going to let that happen, so in that regard it's business as usual and if the local folk don't like it they can move away.

Realistically though, I do need to be aware that when some people get a bee in their bonnet about something they are unlikely to give up easily. I really do believe that the people here who are of a certain age (and there are many) would like it very much if there were no children out playing at all. Sadly, Abby is an easy target, because of her special needs and because she can be a little noisier than the other kids. I do have to brace myself for what happens next and that could well be a complaint to our landlady with a request that we are asked to move. Financially this would be a bit of a disaster, we just don't have the funds available for moving house right now and there is the huge upset Abby would go through with a change of house. With the current financial market it won't be easy for us to get a mortgage, I will be on a health service bursary and my husband is self employed with somewhat irregular earnings, he has 4 or 5 great months a year, 4 or 5 ok months and a couple of dead ones with no income at all, and although we have learned to budget well for the bad months it doesn't look good on paper when earnings are being assessed for mortgage purposes. So our only real hope is to save and save hoping that we can put down a big enough deposit for this not to be an issue.

So, I do have to consider this possibility and act upon it. That might mean limiting the amount of time Abby is allowed to play outside, in our garden and with the other kids.

I've added some photos here of the view from my window so you can see just how close Abby is when she is out playing and how well I can supervise her.

The good news and the bad.

2009-06-23T16:16:00.001+01:00

It’s been a few days since I’ve updated, but life is all a bit up and down. There is good news, Abby is still progressing nicely, I went into the school last Thursday for their dinner and had a fabulous time. Abs had a tiny little scream when I first went in but calmed within a minute and happily showed me the classroom. We sat through a little presentation on the big screen and for once I got to see all of the lovely work all of the children have been doing. We then went into the dining room to have dinner and it was fantastic. Abs was just a superstar; I can’t even begin to describe how different and beautifully behaved she was. She seemed really happy to have me in the school which is a massive change from even a couple of months ago. I was buzzing all weekend after my trip into school.

So onto the bad stuff.

Well, the club that Abby goes to during the school holidays have decided they can’t cope with her full time anymore. It seems there have been complaints about her pressing buzzers, playing with the photocopier and trying to climb the ropes in the gym. So, with little more than 3 weeks before the end of the school term I am frantically trying to find somewhere who will take her. But more importantly somewhere that Abby is happy going to. It’s going to be a huge wrench for her to leave the club, she’s been going for years. I have tried to tell them about all of the positive changes we have seen recently since she’s been taking minocycline, but it’s falling on deaf ears. So, I’m working hard to get this situation sorted before the summer break otherwise I will be forced to give up work/school to stay at home.

But worse than this has been today’s events. I have had a visit from Social services who were responding to a complaint from someone locally about Abby. Abs escapes from the house sometimes and usually I end up running around frantically trying to find her. I have asked the occupational health department for some help with this because in the past she has escaped at 6am when I am sleeping. So, we’ve fitted pressure mats on the front door so an alarm rings in my bedroom if she goes out of the door. It has been a long time though since she has got out for more than a minute or two.
At the weekend Abs sometimes goes out to play with the other children locally. Right at the back of our tiny garden is a green area which is surrounded by houses, the garden ends and the green starts. This is a very enclosed and safe area and all of the local children play here. We live in a 3 storey house and from the middle floor which is the main living area the entire back wall is window so I have a very clear view of the children playing. I think it is perfectly normal and natural for Abby to want to play when the other children are out, often there is a toddler pool out there or ball games going on. We don’t encourage her out there but we don’t trap her inside either. I am confident that she is safe and well supervised.

However, I am becoming increasingly aware that our very quiet neighbourhood don’t like Abby being here very much. She’s noisy. She laughs loudly and doesn’t play with her quiet voice very often. She sometimes shouts and screams when she gets on the school bus in the morning (although not in the past month or so). They also don’t like that she has a swing in the garden, that interferes with the look of the neighbourhood (satellite dishes are banned here).

Someone has phoned social services and has told them that I throw Abby out of the house all day during the weekends until late at night and that she isn’t being cared for. That hurt. I have put every bit of resource I have, emotionally, physically and financially into these children. So, for someone to say that I am neglecting Abby is a kick in the gut. I don’t know what else I can do, I’ve not got any more to give. The social worker went away happy, I think, but I am hurt and angry. I hate that anyone out there thinks that my daughter is being neglected or is unwanted. I would have welcomed someone knocking on my door to say that they had seen Abs out on her own. I would have said, if ever you see her then please tell me right away or bring her home. I know she has escaped in the past on a number of occasions, and I have made the house as secure as I can to stop her, we have numerous locks but she isn’t daft and can undo anything I can undo. Sometimes I sleep; sometimes I visit the bathroom, sometimes I’m engaged with the baby or in the kitchen cooking a meal. I can’t sit by the front door all day every day, just in case.

So, I guess it’s just a matter of time until we need to move house.

2009-06-18T11:05:00.000+01:00

Today is going to be another huge test for Abby.

She is very much the sort of person who likes everyone in their correct places. And my correct place is at home, not in school. Whenever I need to go into school to meet with the teachers or to have her annual medical/review Abby throws a wobbly. School is the place for her, her teachers and her friends. I do not belong there at all, period.

However, this evening some of the students are cooking dinner for the mums and dads. ordinarly I wouldn't even entertain going, I had to stop going to the christmas concert because Abby gets so cross, so I would have missed this one too.

But, because of the good progress we have had lately I am going to give it a go. If anything will spark a meltdown, this will be it.

Everything to date has been so positive but this is one that I really expect to be a problem. I don't think Abs is going to like me going one little bit but it is worth trying. I will update how we got on later.

In other news, after 11 years we have finally been awarded some respite care. Social services have agreed to give Abby 24 nights a year at a lovely respite centre for kids with special needs. I think this is as important for her as it is for us to get the odd day off. She does miss out on going to different places and visiting people. I hope she will enjoy it there. I'm going to have a look around today and meet with the staff before I take Abby for a visit sometime next week. It's going to feel very odd not having her here for a day or two a month.

I will spend the rest of the day putting my notes into some sort of legible order so I can update on her progress properly. We have been plodding on with project ABC so I need to get my notes together and do a nice summary.

The family part 3

2009-06-17T15:06:00.001+01:00

I thought I should spend a little time explaining about the fragile x in the two older children because I have been focusing on Abby and her problems entirely up until now.

My oldest child is 18 now; he wasn’t diagnosed with Fragile X until he was around 8 or 9. He was very slow to learn language and had some quite severe problems through his early years at school. He just couldn’t cope at all with group activities and sadly for him he had almost no help at all through school. He really did have to fight his own way through with just me on his side trying to fight his corner. He moved schools 3 times during a 5 year period and it was all a painful experience for me, so what he suffered must have felt unbearable at times. But he made it through.

He is very fortunate in that he is one of the few boys with fragile x who are high functioning, he does still have some problems, he will never be an academic type of person and he is shy and not very confident in his own abilities. But, he has grown into a kind and caring young man. He left school 2 years ago and went to college to study carpentry. He loves it. He is now thinking about taking driving lessons and one day he would like to have his own furniture making business. He will need help with the business side of things which I will be happy to do, but he is a talented young man and I think he will do very well.

Jess is pretty much a typical female fragile x child. She is largely ok, doesn’t have too many social issues and does ok in school. She does struggle with maths and physics but other than that there are no major issues with her.

I am very much considering putting the other two children on minocycline too. Obviously their special needs are nowhere close to Abby’s but if they can benefit even slightly with their cognitive function it is worth trying. So, I think I will speak to the doctor who prescribed for Abby and see how we get on.

Confidence.

2009-06-17T00:43:00.000+01:00

I have done something today that I didn’t think I would ever be able to do.

Just 4 short weeks ago, I sat here at my computer thinking ‘there must be someone out there somewhere who can help us’ I was feeling pretty desperate for help because I came to realise that we’d gone as far as we can go with Abby’s current doctor. I don’t mean that disrespectfully, she is a lovely lady and she has helped us, but I think we both know that she just doesn’t have the knowledge of Abby’s particular disabilities to offer any more than she has. I’ve mentioned it before but it seems that any referral to other places she makes ends up in the little round filing can on the floor. Not once has one of her suggestions ever amounted to anything. And after 3 years that has become a little tedious. So, I have come to the conclusion that it is time to be brave and step away from the ADHD clinic.

So, back to a month ago. I was looking for someone who did specialise in Fragile X and Autism, and actually it is scary how few people there are out there in this country who work in the area. I can’t speak for other countries worldwide but the amount of specialists here seems to be hugely disproportionate to the frequency of the syndrome. No, I’m being kind. I couldn’t actually find anyone at all. I do know of Mr Turk who works from Great Ormond St, but getting a referral to him is next to impossible as we have found out and he doesn’t have a private practice. I actually only know of him through the fragile x society. Of course I could be entirely wrong and there may be an entire underground network of specialists doing their good work for families with Fragile X. They have done a superb job of hiding their work from my ever prying eyes though. I had got to the point where I was prepared to throw every small bit of resource we have at this. If that meant giving up everything we owned (which I admit doesn’t amount to much, but the sentiment was there) then we would do just that. But I couldn’t find anyone at all who I could throw money at.

So feeling a bit disheartened by my failure to find someone who used the magic words Fragile X syndrome in their areas of interest I thought I would have a look at what research was going on. I was curious about what the current thinking was and what trials were being undertaken or were planned. Which is how I found FRAXA.

When I found FRAXA and Dr Mike (I am turning into his own personal cheerleader, minus the short skirt and pompoms) I found a little bit of hope, and over the past 4 weeks that hope has grown into hope and confidence. And today I got brave.

For over a year we have been in a place where it has been absolutely impossible for me to take Abby anywhere on my own. I could not go to the supermarket or into town without having Frankie or another adult with me. Abby is simply too big for me to manhandle out of danger now and the risk to her and the general public was just too much for me. Of all of the things we cope with, this one was the most difficult to accept. We all lost our freedom, Abby lost out on experiences and at times we all became a little stir crazy wanting to go out and do something, but couldn’t.

Saturday changed everything for me. It wasn’t just about Abby being able to cope with a trip to a brand new restaurant it was also about me getting back some of the confidence I had lost. And, for the moment I have that back.

So, while my lovely husband is working his socks off for 6 weeks in the US during the summer, I have booked a week away for just me and the children. We will be staying here in the UK, but going to a lovely place on the west coast. There will be swimming pools, horse riding, walks on the beach, play areas and lots of nice places to eat. There is even a children’s club who are happy to take Abby and L for a couple of afternoons while I take Jess into the spa and we can have a pampering girly session. During the first weekend, which is actually Abby’s birthday we will be meeting a whole group of friends down there, and I plan to make this Abby’s birthday party, hopefully on the beach. There will be so many new things for her to cope with and there is a small part of me who is wondering if it’s all such a good idea. But my new confidence is telling me that it will be ok and that Abby will have a lovely week full of new and exciting things.

What a difference one month and one person can make.

2009-06-14T23:39:00.000+01:00

Just a quick note, I had some funny settings on the comments so if you've tried in the past (like Angela who alerted me to the problem, thanks Angela) please try again now and it should work.

Noodles please

2009-06-14T21:21:00.000+01:00

The trip to the Chinese restaurant was completely uneventful....

We decided to go for a late lunch, partly because I knew it would be quiet around that time, between the lunch rush and the early bird evening diners. But also because I had to take Jess out to her friend's house (one of her many social engagements)

Abby was excited about going, she spent a while getting herself dressed nicely. We had a little bit of a dressing up session and she even got to wear a little bit of lipstick and eye shadow. She had her hair in neat plaits and put on the pink necklace and the 'high heels' she wore for the wedding. She did look beautiful. The best part to her outfit though was the beaming smile she wore all afternoon.

I told her that we would go in and sit down, then the man or lady would give us a menu and we would choose what we would like to eat. Then they would come and take our menus away and write down what we wanted. They might then bring our drinks while they were cooking our dinner, but that's ok because we would probably be thirsty and our food would come soon. And she seemed fine with this.

So, off we went, all of the way there Abby was telling us how it would be ' get the menu, ask for chips' she said over and over.

We got there and Abs ran for the door, she burst through it and even though I was a good few meters behind her I heard her shout 'CHINESE MAN, NOODLES PLEASE' I'm glad the chap behind the desk saw the funny side to that. The poor chap didn't get much of a chance to get the menus before Abby was ordering, 'noodles, chips, pecil rice (special fried rice) even though she actually likes egg fried rice. So, I ordered for her, she had plain chow mein, egg fried rice, chips and sweet and sour sauce.

I saw the drinks coming and I felt dread rush over me, in my head I was just repeating, please don't throw them, please don't throw them' of course I only ordered water, just in case. 'Drinks are here' Abby said loudly. ' Drinks then noodles' she told herself a few times. And the water remained in the glasses.

She ate her food with lightning speed, she shovels it in as if it's the only meal she's ever seen. I can't see a lunch date with the queen happening anytime soon.

And then we paid the bill and left.

Abby was really pleased about her trip out, although for some reason she’s been saying we went to the chip shop. Maybe because we’ve never been out to get a Chinese meal before, the Chinese man always brings it to us. Anyway, she had a lovely time on her lunch/dinner date and so did I.

2009-06-13T10:51:00.000+01:00

Today we have plans; Abby wants to go to the Chinese restaurant so little L and I are going to take her out for dinner. I have no idea how this is going to go, I hope that she's improved enough now to cope with 'out' a bit better. We've been doing various little trips to the supermarket and the local shops. I haven't quite been brave enough to go into town yet but I think I will do that next week sometime.

She is certainly coping with trips out much better than she ever did in the past. She just seems much more relaxed about life in general. We've still not had what i would class as a meltdown, which is the first time in her life she has gone for a whole 3 weeks without one of those. They were pretty much daily before. She does have moody moments but she doesn't boil over anymore, she clams very quickly. I am so happy that I found Dr Mike's blog, it has changed our lives.

If I'm truthful there have been many times in the past when I've dreaded a weekend, sometimes its been such hard work and I've found it hard to keep smiling and plodding along. I found myself thinking about my darkest moments once or twice lately, times when I've felt that this is all just too much for me to cope with, and feeling so alone and unsupported. It's hard sometimes to admit those times to other people. I remember one time in particular.

It was in March of 2006. This was our first trip to the USA with the kids and we did have a lovely 2 weeks away, but there were an awful lot of moments when I felt we'd made a huge mistake taking Abby away on holiday. This was before the time she went onto Respiridone, she was taking carbamazapine because she was thought to have epilepsy at the time. She was very hyperactive a lot of the time and just keeping her safe and close to us was a huge undertaking. We did survive the trip though with some effort. But, by the time it came to the trip home I was on the last remaining thread of my nerves, I was exhausted by it all.

We were waiting at the bus stop for our transport to the airport and Abby wanted a snack, so I gave her a pack of Lay’s barbeque chips. She loved these, she’d had them once before while in the Magic Kingdom, a day we left early because she had a major meltdown while in the Haunted mansion. She was fine on the ride but didn’t want to get off, which is understandable but difficult when the exit consists of a conveyor belt type walkway. A child laying on her back reeling around in anger causes a blockage and that could easily lead to a human domino effect as the people behind crash into one another. So, I had to grab both of her hands and drag her off like a sack of potatoes. Mother of the year award was looking unlikely at that stage, but needs must.

Anyway, it never occurred to me that the snack she had eaten might have caused a problem. But looking back it most certainly was. But, I realised this far too late, in fact after complete chaos and havoc had ensued.

I could tell on the bus trip to the airport that Abs was a bit edgy and not in the best of moods. But really that’s normal at the end on a holiday when it’s time to go home so i didn’t think too much of it. I thought that we would check in, go and get her some lunch and hopefully avoid too many dramas along the way. It actually turned into the hardest and longest 3 hours of my life. I have never before and never since seen a child quite so wired. I am actually struggling to describe just how hyper she was, it was almost as if I was watching a video on fast forward. She was escaping constantly, biting my hands and arms as I tried to contain her. Everything within reach became a weapon and if it could be thrown, it was. We ventured through that airport like a tornado leaving a similar kind of devastation in our path. She would break free and run at lightning speed into shops throwing things off shelves. She stripped naked and hurled her clothing across the aisles. Eating was impossible, firstly there was no way she was waiting but secondly I felt that the obviously newly decorated restaurant didn’t need a splattering of spaghetti up the walls.

I am used to people staring and passing comment about my lack of parenting skills when they see a perfectly normal looking child have a toddler tantrum but this was beyond anything I had experienced. One woman came up to me and said that parents like me needed locking up and their children should be taken forever, how could I allow a child to behave like this? And that day I just didn’t have an ounce of energy left to argue with her. I simply replied ‘perhaps you’re right’.

The climax came as we were waiting at the gate to board the plane and it took both Frankie and I to pin her down, physically restraining her. It was touch and go that the staff would allow her to board the flight at all and I could tell the other passengers were preying with every ounce of their beings that we were escorted right off the premises. Abby escaping once again and running behind the stewardesses counter (the one where they check your boarding pass before entry to the aircraft) and pulling the telephone right out of its socket didn’t help our cause at all. But, we did convince the steward to let us board first, a good 10 minutes before anyone else entered the aircraft. I had given Abby some travel sickness medication and fortunately this makes her sleepy so things calmed down once we were on board and she was a star the whole flight home. But, I was a mess. I sat there on the empty aircraft and the tears came like a tidal wave. I have never felt so helpless and useless in my whole life.

It was after this incident that I demanded an appointment with the hospital consultant. I did realise that the BBQ lays were the culprit for the worst of the behaviour but at the same time it made me realise what a fine line we walked daily. I just never knew how things would be, sometimes we could go out and have a lovely day, other times it was a disaster from the moment we left the front door. Eventually we got the appointment with Dr T and she prescribed respiridone. And that helped a fair bit. I’m getting a little tired of the appointments with her now though but I’ll explain the reasons for that a bit later on.

For now I’m going to spend a little time enjoying my new found confidence at the prospect of trips out. I’ve found this past few weeks that I actually expect it all to go well before we leave the house where as before I always had a feeling of trepidation at the idea of venturing out. Who knows what the day will bring but I’ll be back later to update on how it all went.

A quiet week

2009-06-11T00:14:00.000+01:00

There hasn't been a great deal to report this week. It's pretty much business as usual here. Frankie has been home this week so we've been spending a lot of time just being a family really, which is why I've not updated all week (slaps wrist).

I can report that the swing is up and is a success, I delegated that task in the end to my long suffering husband, I was too scarred, emotionally and physically, from the trampoline. I can say that I suspect the trampoline will have a long life, well, it should, Abby has bounced on it for less than 5 minutes since its arrival, despite a lot of coaxing from me. Oh well, it sits in the garden as a shrine to woman conquering flat packs. I still snarl at the stupid thing when I walk past.

As far as progress goes we seem to be pretty much where we were. I think I can now state categorically that we have seen some good improvements in Abs since we started this. I think the main point has been her mood and irritability. She is much less irritated by life now, school have reported that she goes in quietly almost every morning and gets right on with her school day. I can say that we haven't had a single problem with getting her on or off the bus at all in two weeks which before now was completely unheard of.

She has had the odd moment here and there where she has been upset by something but rather than screaming and shouting all day long, she now calms within an hour at most, most often its minutes to be honest. I am totally overjoyed by this; our lives are so much easier these days. This weekend I am going to take Abby out to eat (wish me luck). This will be a test I didn't think I would embark on unless we were having a national food crisis of epic proportions. So I will report on that on Saturday.

I’m really pleased that Amber’s teachers are all now following my blog so they are able to join in with the progress spotting. From what I can tell from their reports school life seems to be calmer. I’m not sure we are making any great strides with cognitive function, but I am hopeful that we will see slow and steady progress here. Abby’s use of language is becoming more refined by the day, she is using lots of little fill in words now to make nicer sentences rather than just saying key words, and today she came home and told me that she went to the sensory area without me even asking.

Summary of the changes to date.

2009-06-04T10:40:00.001+01:00

Ok, it’s time to do a summary of how things have been over the past two weeks

Language
I am seeing a definite but subtle change in Abby’s use of language. She is making much better sentences, notably using a lot more of the little fill in words. I’ve been asking her what she did in school and she’s been saying things like ‘we did swimming’ or ‘i did maps (maths) today’ every day (so far) she has said something which has related to her school day, all be it a very short brief sentence.

Anxiety
There has been a definite improvement here. Abby seems to be far more receptive to different situations, I’ve mentioned that she is wearing new clothing with no fuss at all. She has been skipping to the school bus in the morning without as much as a whimper. I’m really happy with this one; the mornings are a dream compared to what they were. She has also been coming home in a good mood too, A few weeks ago I could hear her screaming and shouting while she was still on the buss, and knocking on the door was drowned by her yelling. But this week so far she’s been giggling at the door and knocking beautifully. Yesterday we had the occupational health woman come for a visit and usually this would be met with a massive protest about having someone in the house who is unknown. And, yes, she did ask that the lady go away but she did it while sitting next to her with no shouting at all. In fact, I don’t think she really minded the lady being there at all, it’s just she felt that the normal thing to do was to ask for the lady to go.

Repetitive behaviours

Again, I am seeing pretty dramatic improvements with repetitive behaviours. I do still get the repetitive speech, a little bit, but not nearly as much as before. She does still ask to go on holiday etc, but this seems to be more about making conversation than a constant cycle of the same requests over and over. She’s also playing much better too, she is going from one toy to another, so it will be a few minutes on the trampoline, then to the scooter, then inside to play with her other toys.

Mood swings

This has been the best one yet. I’m absolutely delighted to say that since day 2 of minocycline we haven’t had a single meltdown. If she gets upset she comes out of it quickly and cheers up with a distraction. Before, she would have a meltdown and that would be it for the rest of the day and beyond, no matter what I tried to do to calm her. Her mood is pretty stable and the only time she’s got upset has been when something definite has triggered it. Her mood is now typical of any normal person; we all get grumpy from time to time.

Having Abby’s mood stabilised means that she is open to so much many more trips out and new learning experiences.

And

General cognition.

I can’t say that I’ve noticed a huge change here. I think this may be one which will show any changes over a longer period of time. We are still pretty much where we were at with the alphabet cards. Having said that, Abby is so busy doing lots of different things outside, with the warmer weather she hasn’t wanted to focus too much on learning things. So, although there isn’t a great deal worthy of noting I do expect that it will happen. I’m hoping to see some feedback from Abby’s teachers over a much longer period of time with this one.

Back to school

2009-06-01T19:03:00.000+01:00

This morning went without a hitch, minimal drama and it almost seemed as if Abby was quite keen to go to school, so I was more than happy with that. From the note in her home school book it looks as if she has had a good day.

I have to say I thought that Abby was a little grumpy this evening, but then I realised that it was me who was irritable. No wonder really, I'd just spent 4 hours in the garden trying to build a trampoline in the sun with no one but the wasps for company. Don't you just love it when they give you instructions with diagrams showing people smiling while assembling the thing with ease? Amazingly all of the required bits were in the box so I have to conclude that if diagram man can put it up without using what was left of his bleeding shredded hands to launch the springs into the prickly bush at the end of the garden, it must be me who is rubbish at constructing garden toys. We have a tiny little garden, only slightly bigger than a postage stamp, but I'm really trying to make it a place where Abby can go and let off some steam safely, or just plain have a nice area to play in.

Anyway, I got there in the end after verbally abusing it into submission, and come hell or high water Abby was going to get on it and bounce joyously (please). Of course she actually wandered into the garden and asked for a swimming pool looking pretty unimpressed with my creation. So, I was the one who went off to have a bath muttering ‘no trampolines today’. The swing will be here on Thursday... deep joy, I can barely contain my excitement at the thought of building that.

So, I do hold my hands up and say that quite possibly I wasn’t the most smiley or patient person to be around today. But, she did cope with it ok. Usually if I’m a bit grouchy she picks up on it and makes it clear that she has the monopoly on bad moods. She was quite demanding, she asked for pasta for dinner, which I cooked and she happily ate, but then she decided she wanted pizza, which I refused. Then she asked for fish, which I also refused. I think we went through the entire contents of the freezer until she gave up and realised she wasn’t hungry because she’d already eaten dinner.

After her bath she wanted her hair in plaits, which I did for her. Less than a minute later she took them out and asked for bunches, so I did those and she promptly took those out and asked for plaits.

And breathe...

There was a fair bit of asking to go on holiday today as well as wanting to know the time. So, in some ways the last couple of days have been a step backwards and if I’m honest there have been a few moments when I’ve wondered if all of the progress was in my imagination. But, now she’s asleep and I’m sitting here with a lovely cold glass of wine I see that even today was such an improvement because even a couple of weeks ago even the hint of exasperation in my voice would have triggered a screaming fit and an almighty tantrum. So, my faith is temporarily restored. No doubt we’ll test the theory again on Thursday when I’m sweating, swearing and bleeding my way through project swing.

2009-05-31T11:03:00.002+01:00

This weekend Abby has been a little edgy, we’ve still not had any meltdowns or tantrums at all, but there has been a feeling that things could turn and she could erupt at any moment. Having said that even when there have been a few times which would usually have caused problems she has quickly come around and cheered up.

Yesterday she was obsessing slightly about wanting to go and do things but nothing close to how she is usually, so it’s a small step backwards but considering how far we have come over the last 10 days it’s still massive progress.

I didn’t push her to do any learning stuff yesterday, she wanted to play in the sunshine and that’s what I let her do. I will try to do a bit today though even if she doesn’t feel much like it. I can usually find a way to incorporate it into a game. I have promised that we will make cakes today so I’ll get some counting games in there and maybe see if she can recognise the letters from the names on the ingredients.

The big test will be tomorrow morning when the school bus comes. The combination of having had a week off school and going to club plus the prospect of going back to school is the most tried and tested recipe for mayhem. I’m sure if my friends in the USA listened carefully they would hear Abby’s thoughts on that. It isn’t pretty.

Rude awakening

2009-05-31T11:03:00.001+01:00

The baby is teething and is doing a fair bit of night waking at the moment so I had a pretty rough night. But, it's Sunday and she fell asleep at about 7am, so i went back to bed too... lovely. Abby was still sleeping and the house was quiet.

But, at 9.30 I was woken up by an almighty commotion, someone trying to break in the front door. I ran downstairs (2 flights, we are a 3 floor town house) and opened the door before a boot came through it only to find the police and ambulance there.

They burst in yelling is everyone ok? I said, 'um, yes thanks' wondering what on earth was going on. It seems that Abby had been playing with the phone and had called 999. This isn't the first time she's done this, she does it every now and then, but usually the operator calls me and I say I'm ever so sorry and explain about her disabilities. But today, she had left the phone off the hook so it was engaged when they tried to call. So they sent the ambulance.

The ambulance came and Abby answered the door and shut it again in the woman's face and wouldn't answer it again. So, she called the police to break the door down.

I have never been so embarrassed in my life.

The thing is the police have a note on file regarding some issues I have had over the years with my ex and there have been times when I have been a little worried from time to time about our safety. So, it is lovely that they acted so quickly, but I feel dreadful about it.

I spoke to Abby again and said that she must not play with the phones, she just got a bit upset and said ‘no ambulance today’ But she quickly cheered up and is now telling me that it’s naughty to play with the white phone. I hope this is sinking in otherwise I’ll never go to bed again I think.

How many folks live up there?

2009-05-29T12:25:00.000+01:00

One more thing I should mention.

I should probably have thought to talk about Abby’s ‘alter egos’ at some point prior to this, but better late than never. I apologise in advance if this is all a bit confusing, it isn’t easy to explain, but I’ll do my best.

I can’t put my finger on when it all started, at a guess I would say sometime around 18 months ago. We noticed that when Abby was upset or angry she would argue with an imaginary person. She would shout ‘no Shannon, that’s naughty, no swear words’ or ‘Layla put your shoes on NOW’. There are 3 or 4 of these imaginary people and depending on what’s going on its quite specific which one is which. For example, Layla is the disobedient one who refuses to get dressed, brush her teeth or get on the school bus. Shannon is the one who is naughty. Shannon uses swear words and kicks, hits and bites. Abby is the one trying to keep them all under control. She is the voice of reason who tells them that they mustn’t do naughty things and they must do the things they are asked to do. This only ever comes out in times of stress.

I did wonder if she had a multiple personality disorder going on, and that is something we’ll look at in depth at some point, no doubt. But when I thought about it I realised it might be something a little simpler than a complex psychological disorder. It is possible that Abby doesn’t understand the thought process, so when she thinks she hears it as a voice talking to her, which is why she has given the thoughts names. When she is stressed or angry it’s most likely to come out because she may well be reasoning it all out in her mind. She knows she has to put her shoes on but might not want to, so she may have 2 conflicting thoughts in her mind. Abby knows that you need to wear shoes when you go outside because otherwise your feet will get cold and dirty but on the flip side she doesn’t want to because it feels nicer right there and then (before she goes out) to have bare feet. So, for her to make sense of the 2 conflicting ‘voices’ in her head she gives the opposing thought a name. It’s funny though that it’s never Abby who is the naughty one. If ever I ask who has made a mess or broken something, it’s always Layla or Shannon.

I might be well and truly wrong but I do try to think of a logical reason for a behaviour rather than to go head first into another diagnosis and treatment.

I hope I’ve explained it all well enough for it to make some sense. I certainly have noticed a distinct lack of the other people this week, but then, that’s to be expected when we haven’t had any meltdown moments.

What happened to the sick guy?

2009-05-29T09:17:00.000+01:00

Something hit me like a lightning bolt this morning as I was driving Abby to club. I was listening to Brad Paisley in my own little world, not really thinking about much, just focusing on the road and humming every now and then to ‘so much cooler online’. Suddenly I thought ‘it’s quiet in here’ I turned to look at Abby and she just gave me a little smile, not saying a word. And then it hit, where did the obsessions go? Over the past 2 days she hasn’t been obsessing about anything. I’ve not heard once about the man being sick, no mention of the time and not one word about going on holiday/swimming/picnics or to the fun park (theme park). That pretty much covers our usual conversations.

Her anxiety levels seem to be decreasing too, quite rapidly. She happily went from the house to the car today, without so much as a whimper. And when we got to club she ran out of the car and right up to the playground. As I mentioned earlier, transitions from place to place are usually a huge issue, even if she really wants to go somewhere. Ordinarily we have a bit of a scream and shout when we go to get into the car and when we reach club she usually yells that she wants to go home. Once she’s in there she calms down and gets on with her day. So to say I am delighted with this change would be an understatement. I actually believe that the minocycline is working.

It seems as if her mind is becoming free from the constant repetitive thoughts so she can think more clearly about other things. That makes a lot of sense to me. It stands to reason that if her mind is cluttered with obsessive thoughts and irritations she won’t be easily able to think about new things and to learn new things. If her mind is cleaned up, for want of a better phrase, then it is open to learning which perhaps is why the proper studies have shown that cognition increases.

I’ve been ever so cautious so far with thinking that the slight changes in behaviour I’ve noticed have been because of the pills. I’m aware that I could be having a psychological boost from being proactive and giving her a new medication. And this could be transferred to Abby; she could simply be picking up on my positive mood and her behaviour is improving because of that. But that really doesn’t explain the sudden lack of obsessive thoughts and behaviours. So, for me, the evidence is already starting to stack up in favour of the medication having an effect.

Tomorrow I am going to summarise all of the notes I have made this week and I think I’ll do the same every Saturday. The real test will come next week when she goes back to school and has to do thinking and learning as her day job again. Every day I get a written note in Abby’s home school book to tell me how her day went and what issues there were, so that’s definitely going to be an interesting read.

So far so good

2009-05-29T00:52:00.000+01:00

The last couple of days have been really good. Now, I should say that we do get times when things are pretty calm, sometimes for 3 or 4 days in a row. But, I am certainly seeing a slight change even in these early days.

Abby is on day 6 now of minocycline and there are a few things which are a little out of the ordinary. Firstly, she is in her typical bad 2 weeks of the month so we would expect that there is something close to a war zone in the house. But, as I've said things have been really calm. She has had one or two episodes where she has got upset about something, for example, my husband going to pick her up from her club yesterday. Now, as I've said she adores Frankie, but in his place at the right time. And, it isn't his place to pick her up from club, that's my job. So, she really protested about that and ordinarily we would expect that to go on for the rest of the day and beyond. But, within half an hour she was happily chatting with me and showing me her flash cards.

She is also entertaining new clothing right out of the bag. Now this is highly unusual. Abby doesn't like new clothes, she doesn't much like any clothes if truth be told, she's far happier naked. But new things need to be left hanging for a while where she can see them for us to even have a 50% chance of them ever touching her body. But, yesterday I bought her some new summer clothes and she reached right into the bag and put them on, all of them. Today she went to club wearing a pair of shorts under a pair of longer shorts, a swimming costume, 2 T shirts and a pair of socks. And even stranger, she came home wearing them all too, this is definitely new.

Project alphabet is going well too. I did notice something I hadn’t expected though. When I showed her the flash cards I expected one of three things to happen. I thought she would
1) Not have the first idea what I was showing her or why I would think for a second she would be interested.
2) Recognise the letters and be able to name them.
3) Tell me what the object was that related to the letters from the book.
However, what she is doing is telling me something entirely different from the book, for example when we looked at the letter X she said treasure (X marks the spot) and for J she said Jess (her sister) A was Abby, this went on for the majority of the letters. So it seems that she is seeing the letters in words which relate to things she has a concept of, mostly people and funnily enough Floyd the cat which is slightly odd because I don’t think I write his name too often.

So, I’m going to carry on with this but try to see if she can relate them to other objects which don’t feature highly in her physical world. I’m also going to see if we can teach her the other letters in people’s names. I’ll update on this as we go.

Obviously we are still in really early days with this so it feels a little too soon to be attributing too much to the minocycline, I can’t help but feel a tiny bit hopeful though, everything has been so positive so far.

I do wish that we were doing all of this with a little more support though, I would love to be able to ask questions rather than have to trawl the net for answers to things that come up, for example, is it ok for Abby to have yoghurt when she takes the pill, there is conflicting advice on that so I’m going with not at the moment. I’m also not really sure how long we are supposed to keep her on it for, but we’ll worry about that later.

Oh, and her spots are clearing up nicely.

2009-05-26T01:13:00.001+01:00

Today was fantastic. Abby was happy and relaxed all day. I’ve no idea what happened to the meltdown which has been brewing, maybe she thrashed it out in her sleep last night? This is something I’ve not seen in a long time. Usually when these things are brewing they build and build until lift off. But this morning I woke with a smiling little girl whispering ‘mummy wake up’ in my ear. And, rather than tugging at the sheets and wailing impatiently while I try to come to terms with the night being over, Abby just sat quietly next to me waiting for me to signal that I was ready to face the day.

It stayed like this all day, I’m fairly sure there wasn’t a single raised voice or a hint of a tantrum. She even went outside onto the small green at the back of the house to have a water fight with some of the local children. One of the smaller children had a little inflatable toddler pool and Abby just went and sat in there with her for half an hour or so. It was lovely to see her enjoying the sunshine and really being able to interact with the other kids.

I’m well aware that today might be just one of those freak occurrences; after all we are only on day 3 of the minocycline so I’m sure it’s far too early to start thinking that that’s the cause. But, there were some really unusual little things which are worth noting.

Now, usually if Abby is tired during the daytime she gets grumpy and irritable. It seems the less energy she has the louder she gets. But, this morning while I was in the office she came and sat on the floor next to my chair. She quietly sat there and began to pick a few bits of fluff from my skirt, my hand drifted towards her head and began stroking her hair, and she put her head against my leg, obviously enjoying the closeness. We stayed there like that for almost 15 minutes.

I put a game onto the computer because occasionally when she’s in a responsive mood she enjoys watching and helping me play. It was one of those games where you have to find hidden objects, she likes to look for the animals and gets excited when she finds one, she’ll shout out ‘horse’ ‘what’s his name?’ And we did play for half an hour or so. But all of a sudden I realised that she had moved away and turned around to find her laying on the office floor, close to sleep. I said ‘you can’t sleep there sweetie, would you like to go and lay on the sofa? ‘no thanks mummy, I’m ok’ she said. I can’t remember her ever being quite so articulate . I did move her and put one of her DVDs on the TV for her to watch, which she did for a while before she jumped up full of beans and went off to play.

She is on a school holiday this week and tomorrow is going to her club. I really hope the rest of the week is as good as today, I do worry that one day her club will say they can no longer cope with her. She does enjoy going and it’s lovely that she gets to play with mainstream kids. But more about that later.

What time is it?

2009-05-24T17:41:00.000+01:00

Abby is definitely brewing a major meltdown at the moment. I can’t put my finger on what’s bothering her, but I suspect I’ll be fully aware of what’s going on before long.

She’s simmering, that’s the best way to describe it. She’s obsessing about lots of little things today, most notably the time, McDonalds and picnics. We do sometimes go and get a McDonalds for dinner, not very often though, I think the last time was about 6 or so weeks ago. And, it’s perfectly reasonable that Abby just fancies that today. I did say that we couldn’t go today because I’ve already put some beef in the oven for dinner, and in fairness she’s ok with that. And, she also seems ok with the idea that we can go tomorrow. This has been a big step forward for her because only a few weeks ago she had no concept of tomorrow or the next day, it was now or never.
But, still, she’s wandering around muttering about happy meals and what time is the dark coming? This is her way of understanding that the next day comes after the dark comes and we go to bed.

She’s still asking ‘what time is it?’ and I have no doubt that I’ll be asked this continuously for the next decade or two. And now I come to think of it I can use her interest in this to monitor her ability to learn new things. At the moment she corrects me when I tell her the time by telling me what she thinks the time is, it’s been a little more random today and once or twice she’s said something which makes sense like ’10 past 4’ (even if it’s actually 11am) but usually she tries to cram every possible description of the time into her answer ‘quarter to half ten past to seven o’clock’. But I will note if she’s getting anywhere with learning how to read the time.

I think the edginess in her mood might be the start of her next dose of PMS. It’s got to be coming soon. I don’t think I’ve quite accepted the fact that she isn’t a little girl anymore, seeing the physical changes has been hard because she’s still so young in many ways. She has coped with it all a lot better than I expected, I’ve had many sleepless nights worrying about how we would all manage, and yes, there certainly are challenges still and things to overcome, but she seems to be ok with the actual monthly visit. I’m not sure how we’re going to manage it long term. The pressing issue is to get her mood on a more even keel, it’s no fun for her being very tearful and angry for a couple of weeks every month and it makes day to day life tricky for everyone around her.

The general advice seems to be for her to have the contraceptive injection, and it’s something I’m considering. But, I do have a lot of reservations about it which is why we haven’t gone down that route yet. I certainly had a horrible reaction to the injection when I had it after Abby was born, it gave me awful migraines amongst other unpleasant things, and, once it’s in your body it has to work its way out, there’s no antidote. So, if it doesn’t agree with her it would do a lot more harm than good. At the moment I’m erring on the side of caution and would prefer something a little less drastic, but this is something to discuss if we ever get that appointment with the gynaecologist.

The verdict was... yuck

2009-05-24T01:17:00.000+01:00

I’m going to have to find some new ways to make the pills easier for Abs to take. I did try to get her to just swallow it whole but it wound up with her chewing it anyway. I could tell from the way her face contorted that it didn’t taste much like blueberry pie. This theory was compounded by the way she spent the next hour telling me ‘not orange tablet, pink ones’ So this is no good at all. I might have to branch off from psychology and do a little chemistry tomorrow morning. I’ll see how well I can get it to dissolve; maybe I can add it to some juice or something to hide the taste. I can see I’m going to have to ingest my share too, hey who knows, this week it’s chemistry, next week I could be showing NASA a thing or two from the comfort of my living room.

2009-05-23T18:33:00.000+01:00

After spending what felt like eternity trying to get the printer to play, well, printing. I finally gave up and ordered some alphabet flash cards from Amazon. Feeling very pleased with myself for achieving something I wandered to the kitchen to put the kettle on and promptly realised I have a fridge door completely covered in alphabet letters. Abby has these little electronic things, fridge phonics I think they’re called, anyway, you put letters into the electronic base and it tells you what the letter is and how it sounds.

So, while I was throwing together a chilli for dinner I did today’s exercise in seeing how many letters Abby knew. She did quite well actually. We got to the letter N before she got bored and wandered off. Out of the letters A to N she could name 6 of them. This is going to be as much of a learning exercise for me as it is for her, because I realised that we need to do this with upper case letters. The ones we have are lower case and when we got to n she kept turning it upside down and saying it was a u the same with d and p. So, upper case is definitely the way to go here. I’m hoping that the flash cards I’ve bought have upper case in there, then at least those will be useful after all.

As far as everything else went today, it was all pretty good. I would put her irritability on a scale of 1 to 10 around a 6, she was calm but there was a definite feeling that things could turn any minute. As the day isn’t done yet I’ll reserve final judgement on that.

Today’s obsession is the time. If she’s asked me what the time is once today she’s asked me 100 times. I wouldn’t mind so much if she took in what I was saying, but every time I tell her she replies ‘no, it’s half past to 8’ Somewhere around 10am I gave up arguing with her about that.

ABC

2009-05-23T14:37:00.000+01:00

I’ve just had one idea about how to measure Abby’s ability to learn. She has an alphabet book which says things like A is for Apple and B is for Ball, you get the idea. This is useful I think because it does teach her the letters, but it also teaches the order they come in. I can use this to my advantage. I think it’d be good to start off by seeing how many letters she can recognise from the book. So, without me prompting I can see if she can tell me that this letter is an A or if she will just say what the object is that starts with A.

I will also be able to see if she’s simply learned the pattern of the letters rather than each individual one. Does she know that B follows A and C follows B? So, what I plan to do is make 26 flash cards with individual letters on, no visual clue, just the letter. If I scramble them up, can she tell me the letter out of order? I wonder how many she can recognise today.

Over the next few weeks if we do a bit of the alphabet book every day she’ll most likely be very clear on the pattern of the alphabet, she probably has a good grasp of it already, I’ll hold my hands up and say I don’t really know because firstly we haven’t spent much time on this book and even when we have I haven’t really thought much about how much she’s learned from it. But I can record how well she knows the sequence of the alphabet and how well she is learning the letters individually.

I think I’ll make a start on this.

The science bit.

2009-05-23T13:15:00.000+01:00

As I’ve said, I picked up the little orange pills today. And now I feel the need to get a bit scientific about it. Fortunately I did do a degree in psychology, and even better my degree was experimental psychology rather than clinical. So, I do know how to build a psychological experiment. Useful eh?

The trouble is, when I was at uni I designed ever so useful experiments like measuring the brain’s ability to function fully when it’s using the left and the right brain simultaneously. It was lots of fun getting a group of students to balance a wooden stick on their finger while trying to explain how to make an omelette. But seeing as Abby can do neither of these things it’s not much help here.

I’ve never really done anything which involved measuring a single person’s ability to do a variety of things over time. Nor did I think to measure her ability to do things 6 months ago, even if I had a clue what I was trying to measure. So, I doubt for a single second that my dining room research project will ever win a Nobel Prize for advances in science.

I should also add that I did my degree quite a few years ago and have never used an ounce of it since. But let’s not allow these minor details to get in the way. We need to do some science here, because I would like to see if these little orange pills are helping in any way at all. So let’s start by looking at what the proper scientists have found.

Here is a paragraph I have shamelessly stolen from Dr Mike’s website.

"Minocycline is ordinarily not recommended for patients under 8 years of age because of the risk of permanent tooth staining, though the autism trial mentioned above is treating patients as young as 3, and some studies suggest that the risk of enamel deposits is not as great as generally thought. The usual dose of minocycline is 50 mg PO qD or BID in younger patients, and 100 mg PO qD or BID in adults, and these are the doses used to date in fragile X subjects. Improved language utilization, decreased anxiety and repetitive/preservative behaviours, decreased mood lability, and generally improved cognition have been reported in initial, uncontrolled use of minocycline. These effects are usually readily apparent within the first 2-3 weeks of treatment, though one would expect that longer-term treatment would be required to yield true developmental enhancement. Significant improvement in connective tissue abnormalities (such as flat feet and aortic root dilation) have been reporter with extended treatment."

Ok, so we need to measure
Language
Anxiety
Repetitive behaviours
Mood swings
And
General cognition.

This is trickier than I thought. No wonder the real scientists take ages to get research done. Thinking about the first one, language. At first I thought easy, I’ll just ask Abby some set questions and record her answers on a regular basis for a few months. It isn’t that easy though because she does learn how to answer questions over time so it could well be that she has simply figured out what I want to hear to shut me up. I could use lots and lots of questions, changing them all the time to stop her from outwitting me. But then can I get a real measurement of the changes (if there are any) if she’s only been asked once before?

Maybe I’m over thinking this. I could just ask one set thing every day such as ‘what did you do in school today?’ and write down what she says. That’s a good one I think because I do already ask her that and I have a good understanding of how she answers. At the moment I’m lucky if the answer bears any relation to her school day at all. Usually she’ll just say ‘I’m cross’ ‘what time is it?’ or ‘go swimming?’ Very occasionally she will say something like ‘sensory zone’ to which I’ll then say ‘did you go to the sensory zone today?’ and she’ll shout ‘yes, no school today’.

I’ll run with this I think. Hopefully in a day or two she’ll come home and tell me in great detail how well she did in algebra today.

The next one is Anxiety. That doesn’t seem too hard, it might involve regular trips out though. Again, I can’t go to the same place all the time because i could then argue she’s just getting used to that place a bit more. So, I’ll have to come up with a few places where we can make short trips without causing her too much upset in the process. There are other things which make her anxious, such as transitions from place to place. Going from the front door to the school bus and vice versa is a big issue for her. But also things like having a spot of dirt on her clothing or a scuff on the shoes cause anxiety problems. So, I must make a note of these things too.

Repetitive behaviours. We’ve got those covered alright. I’ll be over the moon if we get nothing else from this other than a day or two without hearing about the man being sick on the plane. She has a whole host of repetitive behaviours though and just noting what she is and isn’t doing day to day should be enough.

Again, mood swings are pretty easy to record. I think I’ll just try to make a note of when she is happy or upset and what (if anything) has caused it.

And the last one, cognition. This is a tough one, for a lot of the reasons I covered in the thought process when I was considering the language thing. How do I measure her learning without causing her to learn with repetitive tasks? And cognition covers a huge area; it’s everything from motor skills to trigonometry. I might need to do a bit of reading up on how the proper educational psychologists do their clever stuff before I decide on this.

2009-05-23T12:23:00.001+01:00

So, would I want a cure and have Abby become just like everyone else? In a heartbeat.

You see, there are so many things I’d be very sad to lose. Ok, ask me on a day when we’ve had to visit a shoe shop to have Abby’s feet measured, something she hates with a passion and you might get a different answer. Not only does this measuring process involve going out to the shops, which actually if you ask her she loves to do, in theory, until we get there. But it also involves waiting, Abby’s least favourite pastime, and having her feet manhandled by a stranger into an odd plastic foot holder.

There is of course also the problem of the stranger not giving Abs the sparkly pink baby shoes she feels are perfect for her. So, the whole process is more painful than having a leg lopped off with a rusty saw. I’ve found it best to dose up on migraine medication before we leave, despite not having the slightest hint of a headache.

I love every inch of Abs, just the way she is. But, even after 11 years, I do still sometimes mourn for the life she won’t have. I suppose it boils down to the loss of choice. I can’t see a time when she could make choices we all take for granted. As an adult, I get to decide all sorts of things, thousands of times a day. From the moment I get out of bed I decide how I utilise every second of the day, ok, there are things included which I don’t feel as if I have a choice about, like doing work or even chores like emptying the bins. But really, I do choose to do everything I do. I weigh up the options, do I empty the bin? Or do I leave it overflowing and stinking the house out? Do I eat a leafy green salad full of nutrients or do I eat nothing but cake?

But even the simplest of choices are often out of Abby’s hands. And, that’s before we get to think about the big ones, the ones which decide what we do with our lives. Do we become a neuropsychologist or do we choose to play drums in a rock band for a living? Get married and have kids or spend our lives doing mission work as a nun in the developing world?

So, although losing the part of Abby’s condition which makes her so very unique and beautiful would be sad, very sad but I’d trade that along with my own life in the blink of an eye to give her the choice of whether or not she should empty the bin.

So, you think you've got me figured out?

2009-05-23T11:50:00.000+01:00

This morning I went and collected the zit pills.

Every time I’ve started giving Abby a new medication I find myself drifting off for a few minutes wondering what this might do for her. And today was no different.

I’ve heard people say, and, I’m sure I’ve said myself, that they aren’t sure they want a cure for their child because then the child wouldn’t be the person we’ve grown to love so deeply. That’s a valid point, we do love our children unconditionally and with a force that sometimes feels as if it could kill us. Abby is my buddy. She’s my right arm and my left leg. Her disabilities make her unique, puzzling, fascinating and challenging.

We all feel incredibly proud when any of our children reaches a milestone or achieves something, no matter how small. But, with Abs, every tiny thing she’s achieved through her life has been monumental. I was told when she was around 3 or 4 that it was unlikely that she would ever have language. So, we accepted that and worked hard to learn sign language, hoping that she would learn to communicate with us that way. I should have known though that if there’s one thing Abby likes to do it’s to prove people wrong. And, one day, I was sitting with her in the garden blowing bubbles with one of those little hoop things you dip in a pot of bubble solution. She was giggling and chasing the bubbles, suddenly she stopped and looked me squarely in the eyes and said ‘bubbles mummy’ And I cried. To this day just recalling that memory brings tears to my eyes and puts a lump in my throat.

I have discovered over the years that my little girl has the determination and bloody mindedness to achieve anything she sets her mind to. A great example of this is the time when she realised that her bicycle had two little wheels that her sister’s bike didn’t have. I think she was about 7 or 8 at the time. She was definitely going through a phase of wanting to do whatever her big sister did, and her big sister had a bike which didn’t have stabiliser wheels. So Abby refused point blank to get on her bike until it looked just like Jessie’s.

Now, I thought that after a few cuts and bumps she might see the value of having a little help with balancing on the bike and concede that it was a lot more fun to ride without the constant injury. But, once again she proved me wrong. This didn’t happen overnight. She was on her summer holiday from school and spent every single day for the entire 6 weeks working on riding this bike. She was going to a holiday club every day which was held in a school outbuilding. The club had the benefit of a huge fenced off playground which was perfect for bike riding and from the moment she passed through the gate at 9 am until the time I collected her at around 5pm she was on the bike. Falling off didn’t seem to bother her too much, but she did have a fine collection of brightly coloured plasters covering every limb. I loved that she was trying so hard but also wished that she would give up and play with something a little less painful.

The school holiday was drawing to a close and it seemed that she was no better at riding this darned thing than she was at the very beginning. Of course we’d all tried to help but she didn’t entertain our efforts, she saw it as intrusion, I think.

Three days before the end of the holiday I pulled into the car park and parked the car in the only space which was available. It was a tight fit and needed concentration to make sure I had enough space either side to open the doors. So I wasn’t really taking any notice of what was going on outside of the car.

I got out of the car and walked up the pathway towards the playground gate, tired and daydreaming. About half way up the path I looked up. My legs instantly turned to stone stopping me dead in my tracks. I gasped air inwards before momentarily losing the ability to breathe. Through my tear flooded eyes I could see a little girl with the biggest smile on her face I’ve ever seen in my life, she was flying in circles around the playground on two wheels as perfectly as if she’d been born doing it.

And I wished that moment would never end.

And then there were four.

2009-05-22T15:13:00.000+01:00

The little addition to our family was a good idea as far as Abby is concerned.And, by some miracle we managed to break the 100% hit rate for producing fragile x kids and have one who doesn't have the gene.

I have to say I was a little worried throughout the pregnancy when Abs refused to entertain the idea that there was a baby in mummy’s gargantuan tummy. She insisted from the word go that it wasn’t a baby, it was a dog. Lots of people talked to her about the new baby sister that she was getting but she never deviated from the notion that Dave the dog was in there, and, she made sure the string was readily available for the moment when Dave was born.

Thankfully though she instantly fell in love with little L from the moment she first saw her. Abby loves her new role as a big sister. She enjoys the nappy changing part the best, she squeals with delight if the baby produces a big poo, the smellier the better. I’ve long since stopped trying to figure out what goes on in that head of hers.

But, it is definitely her job to get the nappy and the wipes and to put the smelly nappy in the special bin. She’s always loved giving the baby cuddles, and now the baby is a bit more robust she’s really enjoying playing with her.

The one minor issue is that Abby can’t quite grasp the idea that she isn’t the same size as a 6 month old. So, she does try to include herself in the games a little too much at times. From the corner of my eye I have seen her trying to wedge herself into the baby’s door bouncer and the baby swing had a close escape once or twice when Abs plonked herself onto it in the hope it would rock her gently to sleep. She seems to think that baby sleepsuits are suitable items of clothing, even if they are 11 ¼ years too small for her and to her the cot looks like the ideal place for her to get a good night’s sleep. We’re now going through a phase of her insisting on wearing a bib at mealtimes while feeding herself mashed potato from a plastic spoon.

But, all in all the baby has been a success and has the green light to stay, which is a bit of a relief.

2009-05-22T13:26:00.000+01:00

Now, I’ve explained all about the early years and Abby’s family but that isn’t an accurate picture of how the family is today.

I split with Abby’s dad not too long after her diagnosis and spent quite a long time as a single mum. I did have a couple of relationships during those years, but nothing that was significant in Abby’s life.

In 2005 I met Frankie and very quickly it became clear that he was a keeper. We married in September 2007. Abby has a very special relationship with Frankie, he works away regularly and Abby misses him when he’s gone. His is the hand she chooses to hold when we are out and he is the one she wants to be next to if we are daft enough to visit a restaurant. Although now I come to think of it, I don’t think we’ve done that since we were in Florida when Abby was in one of her throwing phases.

We’d been to Busch Garden’s that day, which Abby thought was the best thing in the world. For someone who has sensory issues she gets a somewhat masochistic pleasure from rollercoasters. She particularly enjoys the ones which leave your stomach feeling as if it’s wedged in one of your sinuses. Perhaps she enjoys the feeling of freedom she gets from being thrust out of a dark tunnel at 3000 miles an hour only to find yourself freefalling 200 feet facing the floor at a 90 degree angle. Who knows? But I do know that the wilder and more gut churning the better as far as Abby is concerned.

So, she’d had a lovely day and fortune smiled on us by the way of a small storm. It wasn’t enough to close the rides for very long, but it was enough to keep the majority of Tampa tucked away somewhere warm and cosy. So there were very few people in the park which meant we covered the whole place three times over with multiple rides on each of Abby’s favourite internal organ scramblers.

She wasn’t overjoyed at the thought of leaving the park and despite being tired and very hungry she wasn’t keen on the idea of stopping to get food on the way home either. But, the wails of starving children in the back of the car drowned her protests so we decided to stop at Denny’s.

My husband loves Denny’s and for him this was likely to be the highlight of his day. On the drive there I could tell he was already perusing the menu in his mind by the distant look on his face and the slight chewing motion he was doing with his mouth.

Now, sometimes we have routines at home which I don’t realise exist until they smack me in the face. This was going to be one of those moments. We entered the restaurant and chose a table which was as far away from other diners as we could manage. The place was quite busy that day so this wasn’t easy but we spotted a table which had a couple of small empty tables between it and the next party of diners. We were seated by the smiling but ever so slightly flustered waitress who took our order for drinks as she gave us the dinner menu.

I seem to remember that we ordered a couple of large diet cokes and milkshakes of varying flavours for the kids. Abby was sitting in her seat calmly and quietly. Experience has taught me that this isn’t always a good thing despite how it might look, sometimes the expression calm before the storm is a perfect way to describe what’s actually going on.

The waitress came and delivered our drinks order and took our order for food, so far so good. I do recall looking at my large bucket of coke and thinking that next time I must order something which wouldn’t dwarf a water tower.

Abby very calmly stood up and with lightning speed managed to grab each of the drinks within reach and turned them upside down before launching the cups into orbit. To say that our area of the restaurant was flooded would be an understatement akin to calling a tsunami 'a bit of a choppy sea'.

The waitress came over with a collection of wholly inadequate paper towels to mop up while trying to reassure us that these things happen all the time and it’s no problem at all. You’ve got to love the ‘have a nice day’ mindset. We left quite swiftly after requesting that our food order be put into ‘to go’ containers and leaving a tip which actually dwarfed the entire food bill.

Of course now I realise that the problem was that when we eat at home the food hits the table first and then we bring drinks. This had obviously been building up in Abby’s mind for the week or so we had been away, she couldn’t cope with the idea that when you eat out the drinks come first. The result was eventually it exploded out in a multicoloured man made ocean.

I really don’t think we’ve eaten out since then.

So, back to the family. Well, we had a fabulous trip despite the little hiccups along the way, and, all in all I can say that Abby had the time of her life. Considering she had to deal with a multitude of different places packed with strange people she was a superstar. And, clearly she loved it because no matter how well I hide her pink suitcase in the garage she manages to find it and regularly shoves towels and knickers in there before placing it in the boot of my car.

I started to feel a little bit on the poorly side a couple of weeks after we returned home. And, one morning I checked the calendar only to realise that this month my body had forgotten to give me spots, migraines and put me in a very bad mood for a day or two. There are no prizes for guessing what came next but it did involve peeing on a stick, 9 months of vomiting, swelling to the point I resembled the blueberry girl from Charlie and the chocolate factory and me making oof noises every time I moved more than an inch or two.

The result was an amazingly unbelievably gorgeous little poop factory who goes by the name of Lola.

Now there's a surprise.

2009-05-21T15:39:00.000+01:00

I have to say that these days very few things surprise me. But just 5 minutes ago I have had a phone call from someone who is willing to give me a prescription for the Minocycline.

Ok, I might have ever so slightly over egged the zit factor, but Abby does have some spots, the other day she had a giant one right on her hairline. I can tell you I ducked for cover while she was brushing her hair that evening.

And, yes, I do feel a bit naughty, although to be fair the doctor in question does know Abby’s history very well, so it isn’t beyond the realms of possibility that the prescription has been written with a full understanding of why I might be so keen to solve the ever so pressing issue of Abby’s acne.

I am quite excited though and I don’t feel in the slightest bit irresponsible or guilty for wording my request in a way which made the prescribing of the medication more likely.

God bless those spots.

So, the prescription should be here in a day or two and then we’ll begin the process of trying to get her to take the pills. I have my methods, but, she also has ways to ensure that the taking of medication doesn’t run like clockwork. She won’t swallow a tablet, she chews everything and some of the pills must taste awful, so I try to disguise them as best as I can, not always with much success though. She looks suspiciously at a pot of yoghurt these days and will always have a good dig around in there to see if there are any unidentified objects before she dives in. Chocolate buttons have never had the same appeal to her since I took to pressing two together with a tiny little tablet in the middle. I even tried putting one into the middle of a Jam sandwich once, I never realised quite how aerodynamic a sandwich could be, up until that point.

Who knows what the next few months might bring. I am prepared for nothing at all to change, that’s been the story to date, so there really is no reason to assume that things will be different this time. But for now we have a little tiny bit of hope and that’s so rare it’s worth clinging to just for a while.

2009-05-21T13:21:00.000+01:00

I suppose the next job is to send an email to Abby's consultant at the ADHD clinic to see if she's prepared to work with Dr Mike over at FRAXA. I'm not really sure why this prospect is filling me with dread, she's actually a nice lady.

Abby isn't keen on the visits to her clinic. It's nothing personal I'm sure, it's just one time they decided to take some blood for a test to see if her medications were causing any liver or kidney issues. So, Abs doesn't like to go there now and lets everyone know her feelings about it, loudly and clearly.

Thankfully we only go a couple of times a year now, but, being honest it does feel like a waste of time. Usually we sit there for an hour and discuss how things are. Then Dr T says she will make referrals to all sorts of places. She has suggested that Abs goes to a place where they can assess her behaviour and make recommendations for some strategies to help her overcome some of her problems. Then there was the referral to Great Ormond St to see someone about helping to stabilise Ab's mood swings and outbursts. Most recently there was the suggestion that we see someone who can deal with the gynaecological problems Abby is having. Well, not so much gynaecological really, the physical function seems fine, but she felt that a referral to that clinic might be better than just seeing the GP to sort out the two weeks a month when the hormones are running rampage.

To date we're still waiting for all of these. Although we did get a letter after a year to say that the Gt Ormond St wasn't happening because it would cost too much.

2009-05-21T13:06:00.000+01:00

I’ve had a lovely long chat today with the fragile x society here in the UK. I’ve been a member of the organisation since the kids were diagnosed. And they are fantastic. I haven’t really been an active member for a few years though, but I do read a lot and try to keep up to date. But for anyone who has fragile x in their family the organisation is a must, they are so friendly and are happy to just sit and chat about life, the kids and will do whatever they can to help. So, I’ve got a new load of educational material winging it’s way over to me for me to pass on to Abby’s school.

Abs school is really good and they do try very hard to help her with everything they can. But, I’m sure they’ll be glad to read some new material and will take from it anything which might be of help.

They have also sent an email to the leading specialist on Fragile X in the UK asking him for a suggestion of a specialist who might be able to see Abby for a consultation. If we have to pay we will. I know it isn’t right to see people privately, in my heart I know that everyone deserves to get the help they need regardless of finances. But, we really are at the point of needing help. It’s pretty bad at the moment. Abby is finding it impossible to go out of the house other than to school, we do try but she doesn’t cope. So we are all becoming prisoners in the house at weekends and holidays. She is also really having a hard time with her hormones. PMS doesn’t even begin to cover her symptoms for 2 weeks of a month. So, frankly I’m going to have to put my morals to one side and find the money to pay for consultations, if needs be.

Could you just get spots already?

2009-05-21T12:19:00.000+01:00

http://www.medicalnewstoday.com/articles/124215.php

I read this article with interest. I read loads of articles with interest and there is hope that one day we will have new therapies which will help or even cure.

This one struck me though. Here is a drug which had been used for over 50 years and it's as safe as any other drug as far as I can tell. Of course there are people who have had problems but that's surely the same for all medications. I might be wrong but I don't think anything on the market is 100% safe for everyone.

And of course, it might not work. No one is saying with 100% certainty that this will be effective, no one knows and won't know until extensive human trials have taken place. And to date I've been very willing to sit patiently waiting for the clever people who develop these things to do their work, however long it takes.

I have to say though that this is testing my 'patience gene'. The toxicology tests were done a very long time ago and this antibiotic has been prescribed to millions of teenagers worldwide for decades. So, can we cut out a little bit of the red tape and give it a go? After all, Abby is already taking medication which is far more toxic and has the potential for some pretty nasty side effects. It's all about benefit vs. risk, isn't it? Well, as far as my untrained eye can see, there isn't a huge risk here and there might, just might be some big benefits, but we'll not know that unless we take a punt.

So, armed with the research I took a trip to the doctor and asked if he would be prepared to prescribe her some minocycline. But, we came away empty handed and I was left feeling a little irresponsible for asking that my daughter be prescribed something which wasn't indicated for her disability. Didn’t see that coming (rolls eyes).

So, I sent an email over to Dr Mike. Now, he is a very ethical fellow which is absolutely correct. Of course he isn’t going to write random prescriptions to people from the internet. If he did I would run a mile. But, he is willing to work with any doctor over here and make recommendations based on his vast experience in psychopharmacology and fragile x. And of course I am more than happy to pay privately for the benefit of his expertise. So, the next job is to find a doctor over here in the UK who might be willing to listen to what his thoughts are and what he feels might be of benefit to Abby. Hopefully then we might move a little closer to helping her with some of the more pressing and severe problems she is facing at the moment.

2009-05-21T10:34:00.000+01:00

Medication.
I’m going to start this post with a quote from Dr Michael Tranfaglia MD
Medical Director, Chief Scientific Officer, FRAXA Research Foundation

FRAXA Research Foundation is a non-profit, 501(c)3 organization which is
dedicated to funding biomedical research for improved treatment and,
ultimately, a cure for fragile X. Fragile X is not only the leading
inherited cause of mental retardation and autism, it is also one of the most common
single-gene diseases in humans.

For anyone who might be interested Dr Mike’s blog can be found here http://drmikespsychiatryblog.blogspot.com/
and the FRAXA website is here http://www.fraxa.org/

Fragile X syndrome isn’t rare, it’s actually really common. So, why is it that the people giving medical care to our fraggles know very little about it and seemingly less about how to help treat the symptoms? I know I’m by no means unique in feeling this way; it’s the cry of many parents out there with children who have the condition. Despite having three diagnosed children I have yet to meet a single person who specialises in the area and on more than one occasion have had to explain what the syndrome is and how it affects the kids. Ok, in fairness it is a spectrum disorder and one child’s symptoms might be very different from the next. But there are similarities and issues that run through from one end of the spectrum to the other.

Our Abby has pretty much the majority of the problems associated with fragile x and autism. She has hyperactivity, severe developmental delay, impulsivity, violent outbursts and mood swings verging on bi-polar (we are yet to add this diagnosis to the collection although we have come close). She has fixed and rigid routines and sensory issues. This list isn’t exhaustive, but it’s a pretty good overview of what she is dealing with.

So, medications. Well, currently Abby takes 1.5mg of rispiridone a day. I think it’s helped a bit; it certainly seemed to in the early days. I’m not sure if she’s now so used to the medication it isn’t having quite the same effect or whether it really is helping but other behavioural problems are taking over. We did have her on Equasym 20mg a day but took her off that within a couple of months because the benefits in her attention were outweighed by the increase in her autistic symptoms.

The last appointment we had with the consultant was in April who suggested ending all medication to see how we got on. So, reluctantly we reduced her dose of the rispiridone down to 1mg a day for a week and then to ½ a mg. It soon became clear though that the medication was helping, Abs became really violent again and the day she threw a table across the classroom before climbing out of a window was the day we put her back on the 1.5mg dose. We haven’t discussed this with the consultant yet, but seeing as the next appointment is in July we weren’t about to wait.

Where are we now?

2009-05-21T10:33:00.001+01:00

Abby is now 11 ¾ and is starting on her journey to womanhood. We certainly have our fair share of hormones running rampant through the house. She started her periods a month or two ago, that’s a trip I can tell you. No one in this house is at all shy about the monthly process, and you visit the bathroom at your own peril during those few days a month. This is something else we’re working on, but more about that later.

In many ways Abby is still a very little girl, she likes all things girly, pink and sparkly rank as her number one criteria for choosing anything, from clothing to household objects. Therein lays some problems. Getting pretty little girl’s clothes and shoes in little kid sizes are no problem at all. Finding pretty pink glittery shoes in an adult size 4 -5 (37 to 38) poses a bigger problem. Abby is currently obsessed with Lelli Kelly shoes, these things were neither designed to fit young women nor were they made to be particularly hard wearing. We go through shoes at an alarming rate, a slight scuff mark or wearing of the print on the insole renders the shoes broken in Abby’s mind and fit only for the bin. She refuses to wear anything on her feet which isn’t in factory perfect condition. Not so good when you have a child who likes to climb trees or use her toes as a braking system when on a scooter. We sometimes manage to get a couple of weeks wear out of a pair of shoes, other times a day or two is the limit. Oh how I wish someone would invent some women’s sized sparkly pink shoes designed to withstand a good 100,000 motorway miles.

Abs does have language now, but it’s very much language on her terms. She can answer some questions, but the answers tend to reflect when she learned the answer, for example, she learned a year ago that the answer to ‘How old are you?’ is 10. So, 10 will remain to be the answer for the duration. She has an incredible memory. 18 months ago we took the kids on a trip to Disney in Florida, on the flight home a man sitting a few rows back had an epileptic fit, something Abby was quite concerned about at the time. She quite likes it when people are sick, sneezes or coughs invoke a fit of the giggles. But I think she was genuinely concerned for the welfare of the man a few rows back. She must have been because to this day we have a daily rehash of the events. ‘The man was sick’.... ‘He was’

Abby certainly has a clear understanding of what she does and doesn’t want. Sadly this doesn’t always fit with our plans for the day. ‘No school today, No that bus today’ She seems to think that the louder she shares her feelings about these things, the better her chances of getting her way, oh how she tests this theory.

Abs wants a dog, she’s quite specific about this. She wants a dog called Dave which she can put on a string. I think she means she wants to take Dave the dog for a walk on a lead. She has the ‘string’ already. This happened during a rare trip to a supermarket, I was feeling quite brave one day and felt the need to try and negotiate with a star shaped child who was sprawled on the shop floor. After 20 minutes of crisis talks we agreed that she could indeed have the ‘string’ but had to leave the entire aisle of dog food and flea treatment for another dog.

We would buy Dave the dog, but we are all allergic to dogs and I know the poop would be an issue beyond imagination. So, poor Floyd the cat has to suffer the indignity of being led around on the string, for the time being at least.

Early years part 2

2009-05-21T08:13:00.000+01:00

The years which followed were chaotic to say the least.

I discovered that despite being a very common condition no one really knew much about Fragile x syndrome. I decided to have the other children tested too, fully expecting that my son Bobby would also test positive, but I was equally sure that Jessie, my older daughter, would not have the condition. I knew both children had a 50/50 chance, so that seemed a good educated guess as to the outcome.

This time, however, there was a little more ceremony to the revealing of the results. The doctor called me at home and asked me to come into his office later that day. ‘Don’t come alone’ he said in a quiet voice. So, I didn’t. We all arrived at the hospital, me, the children’s father and my collection of medical mysteries.

There was quite a lot of ‘beating around the bush’ which I found a little frustrating. ‘Just tell me the results please Dr B’ I asked. ‘Ok’ he said. I’m sorry to tell you that you have the full mutation of the fragile x gene and so do all three of the children’. Yep, ok you got me doc, I wasn’t expecting that.

I think I went through every emotion known to man in the few days following that meeting. From guilt, sadness, worry, mourning and panic to relief, optimism and joy that now we knew, things could be done and the kids would get all the help they needed.

I made what felt like a zillion phone calls to the various official departments who dealt with kids who had special needs. I managed to get a visit from a social worker from the ‘children with disabilities team’ Sharon was a dying breed; I can vouch for that now. A rare throwback to the days when people did things they promised to do and who didn’t over use the words budget or funding. She managed to get Abby’s assessment done quickly and painlessly for her statement of educational needs, she even organised some special ‘at home’ therapy from an early years tutor. She sat with me one day and said, ‘you aren’t alone, there is help out there, and I’ll do whatever I can to see that you are all ok’ and she meant it, she worked hard to get things up and running. Sadly though, Sharon left social services soon after to dedicate her time to the local children’s hospice. And things were never quite the same again.

Abby was diagnosed with Autism when she was around three years old. That diagnosis was of no surprise at all, and actually did her a few favours. Once she had the autism label it opened up a whole new world of therapies, ok I exaggerate but there was a lot more funding for children who had autism than just plain old fragile x. It also had the added benefit of being a condition that people had actually heard of. So we got the use of the Autistic support workers who did a lot of trying to coax Abby out of the corner of the room and prising the object she had been rotating for an hour or two out of her hands.

At around this time she started in the local school for children with severe learning difficulties. And she’s still there.

So, there we have a little bit of an introduction to Abby and her family. This blog isn’t really about the early stuff though. It’s a lot more about now and what happens next. I’ll explain more in my next post.

2009-05-21T08:09:00.001+01:00

Abby was a creature of habit from the moment of her birth. She was born on August 1st, the day she was due. She was a beautiful blonde haired blue eyed baby who found a routine almost instantaneously and stuck with it.

Abby has Fragile X Syndrome and Autism.

At first we thought she might be deaf. That's how we explained away her lack of reaction to our voices. We tested this theory well, with saucepan lids being the object of choice to crash together behind her head, desperate for a blink or a reaction of some sort. All I seem to remember though was a slightly puzzled look on her face, which, in hindsight, was a perfectly sensible response.

When Abby was 9 months old we requested a hearing test, half of me was expecting to hear that she had a hearing problem, the other half worried that the problem ran deeper. I don’t think I was surprised when she passed the part of the test where they sent bleeps into her ears, or when she failed the voice recognition part either. It just confirmed what I already knew, something wasn’t right.

Abby wasn’t my first child, I already had a son and a daughter. My son had an undiagnosed developmental delay, he was 6 when Abby was born and was only just learning to talk. My older daughter was as bright as a button, if something couldn’t be done at 100 miles an hour it didn’t need doing at all. Three children, all so different, it’s no wonder I didn’t really know what was considered normal.

But, I did know that things weren’t going to be plain sailing with my curious little bundle. She wasn’t a very sociable baby; she was far happier just left to her own devices. She wasn’t keen on us intruding on her personal space; it would have been easier and less painful to change the nappy on a feral cat. Feeding had to be done at arm’s length and cuddles were entirely out of the question.

Somehow though the description of these symptoms sounded like a perfectly normal baby to the various health care providers who came into contact with us. It was eventually me who was diagnosed with post-natal depression and given medication; I was simply a bit neurotic.

Eventually when Abby was around 18 months we got someone to listen, all be it as an afterthought while I was in the car park grappling with a furious baby as I tried to get her into her car seat. We had been for a visit with the consultant paediatrician; I’m sure as the health visitors last ditch effort to shut me up. Abs had failed every single one of the developmental checks but still the doctor felt she was just ‘one of those slower babies’ Of course until we left and she had time to mull it all over. She ran out of the consulting room and shouted at me across the car park ‘perhaps we should bring her in for some tests’.

And so it began.

For a while it felt as if our whole world revolved around the children’s ward at the local hospital. It seemed endless; blood was drawn, clipboards holding mysterious bits of paper were written on by people who didn’t say much other than the odd hmm and ok. The brain scan was a funny day. There were half a dozen little ones in that day for their tests, all of them carrying their favourite teddy bear, toy truck or doll. Not my Abby though, oh no, nothing would do to comfort her other than her favourite bottle of tomato ketchup, she had a bit of a ‘thing’ for plastic bottles at the time.

Eventually though the testing was all done. I half expected to have a grand reveal of the final results, so much work had gone into this it felt fitting to have some ceremonial ending to it. But, the results came sometime around tea time on the Thursday just before Halloween. The consultant called and very matter of factly said ‘Abby has Fragile X’

Um, Fragile what?