jb1964

My daughter has only just been diagnosed with AS (she's 12). She has always had health problems on and off and we put a lot of her behaviour when she was little down to not feeling well and being very naive for her age. Although we always worried there was more to it - it was really only when she got to around 7 or 8 that we thought she seemed 'different' and should be starting to understand more. She's been seeing the same Paed. consultant since she was 6mths old and visited him between 2-6 times per year ever since - for her growth (weight & height) he never suggested to us there was a problem other than he thought she was stubborn, and very strong willed and wanted control (especially over her eating). She's probably visited the GP around 10 times per year on top for constant infections and other things. Last year he referred her to a pysch. team because he thought she was suffering from anorexia (although he didn't tell us that - they psych. did). After six months of visiting their unit on a weekly basis and having a CPN visit the house weekly they diagnosed AS much to the annoyance of the Paed. When the Pysch. contacted her primary/nursery school for info - she couldn't understand how it hadn't been picked up in school as their summary gave all the pointers. She also saw a pysch. when she was in primary school because of her obsessions with noises and subsequent 'tantrums' - their report also gave all the pointers but nothing was suggested or done and at the time we didn't know about AS. At school she was in a class of 30 with a 20/10 ratio of boys/girls - and the teachers were always saying how lovely it was to have someone just sit and be quiet compared to all the hullaballoo from the more boisterous boys. The pysch. said that very often kids get overlooked in school because of this, especially if they have a difficult class - and they come home and explode because they've had to be so 'controlled' in school. Can you go through the school pysch. for help rather than your GP? I'm new to all this and still learning myself - I think perhaps we were lucky we went through a different route than usual so perhaps got more help - although the awful thing is that in our area once they diagnose they have to pull out from their support and you are completely on your own. I know they've said there are support groups and I've just found this one today. They also said to contact the NAS but I don't really know what I'm going to say to them - or if there is anything else we can do. So although a diagnosis has been helpful in knowing why certain things are very difficult for my daughter - but unfortunately they don't get much help after that.

My daughter is similar - I can't say she's not good at maths - it's just sometimes she struggles with a few things put together. I know when you say x - y = answer - it's straightforward - but when you introduce money and shopping with it she seems to struggle with the other things being in the same sentence and can't seem to get past the first few words.

I read the article yesterday and it does make you worry especially when you have a child that doesn't eat very well and what they do eat is limited. We've always had problems with my daughters small appetite and unvaried diet - she always took minadex when she was little and now I give her build up when she's off her food.

Hi, I'm new to all this - but when my daughter gets all wound up and in a panic when she's ill I allow her to use something in her comfort zone - i.e computer or her ds in bed. I know it's not the ideal situation (and its hard work getting them off it for a break), but more often than not she reads which I don't mind.

Hi, I've only just found this forum - and am new to all this. My daughter has recently been diagnosed with AS (12yrs) and just as we have seemed to try to get our heads round understanding why she has behaved like she has for so long - we've gone through the dreaded periods. She's had 3 in just over a month all lasting a week long and very heavy and distressing. She's paranoid about doctors, dying and blood so all things considered I suppose she's been fantastic ! in dealing with it. I've took her to the doctors who are speaking with the consultant at our local hospital about putting her on the mini pill (the doctor needed advice on this because of her weight - she's 5 stone) - which she is also petrified of because she doesn't know what it tastes like and its not natural etc, although she appreciates that she doesn't want to go through this as she is. Obviously the school are on our backs all the time anyway about home tuition and I'm sure they don't believe me or think its as bad as it is (as they probably think all girls go through this) but she's not been to school now since the middle of December although I'm hoping she'll be over this one to go on Monday. I've looked over the forums and can't see anything on this and wondered if anyone has faced similar problems and could offer some advice. Many thanks,