Back story for those who don't know it.
DD is now 14 and in yr 9. Up until October 2012 she was basically fine. She had mild asthma, mild dyslexia, mild tinnitus, wore glasses for short-sight but was otherwise ok. She did however have pretty bad acne and when the GP ran out of options, he referred her to a dermatologist who started her on isotretenoin (Roaccutane) treatment. Almost immediately she developed joint and muscle pain. This is a known side-effect though it is unusual for it to happen so quickly on a low starting dose. Dermatologist suggested stopping and then starting again more slowly. Pain disappeared when we stopped and came back when we restarted. Dermatologist then stopped medication altogether
However the pain didn't stop. Her legs became stiff, then shaky. By January 2013 she could only walk with crutches, By April she was unable to weight-bear and started using a wheelchair. This Feb she developed problems with her arms, mainly right but sometimes both. A couple of weeks ago she started having involuntary jerking of her legs.
She was investigated pretty thoroughly by a paediatric rheumatologist and then a paediatric neurologist last year. They both concluded that they could find no physical reasons for the symptoms and thought that it was likely to be psychological. She was referred to a child psychologist who works in the paediatric dept. and had about 8-10 weeks of assessment with her. She thought it likely that dd had a conversion disorder (when psychological stress manifests itself in physical symptoms). She asked a psychiatrist attached to paediatrics to assess. Again her conclusion was similar.
Neither have been able to pinpoint any definite causes or difficulties that dd has. She doesn't have close friends but has no difficulties in getting along with peers or being friendly. They thought she had some anxieties but she denies that she is a worrier. Her brother has had very severe OCD and that has obviously had an impact on her life, but she says she can scarcely remember anything else. She was 5 when his OCD started.
She was referred to CAMHS with a recommendation for psychotherapy. She has just finished a 6 weeks assessment and the conclusion is that she is not suitable for psychotherapy as she is uncomfortable discussing her feelings and it may therefore be more damaging than helpful. I will get more detailed feedback next week.
CAMHS are holding a profs meeting in 2 weeks to discuss where to go next. As far as I can see their only other option is CBT. DD says she accepts that there is nothing physically wrong with her limbs but she still can't use them properly. The original psychologist felt that CBT was unlikely to help and I agree.
I don't have much faith in the CAMHS team. The psychiatrist says he has lots of experience with conversion disorder but seemed to think that telling dd there was nothing wrong and asking her to think about trying to move would sort it.
We have family therapy around ds's issues but they have taken dd on board too and seem to be telling us(me) that she is having problems because I am pandering to her and I have to be cruel to be kind. Neither psychiatrist nor family therapist can give me specific strategies when challenged.
Meanwhile SENCO wants to refer dd for ASD assessment. I'm not sure if this is her own idea or if it is prompted by feedback from CAMHS.
DD is a little quirky but just as AS is not just being quirky so being quirky doesn't mean having AS. Her lack of close friends is I think partly because of circumstances - distance from school, her lack of mobility, my lack of mobility, the difficulty of having people in the house because of ds's issues until recently. Also she is quite picky about friends and very academically able in a very mixed school.
I can't really see anything else indicative of ASD although maybe I'm burying my head in the sand.
I hadn't intended to mention it to dd until I had done more thinking about it myself but she read my Goose and Carrot post in which I had forgotten I had mentioned the conversation with the SENCO. Fortunately she thought it was hilarious and having talked about it a bit more her inclination is to go for assessment just to get people to shut up about it.
She has regular hydrotherapy which helps with the pain and helps retain the mobility she has. As she has a burn on her arm from an accident in the science lab she hasn't been able to go for a few weeks. There is no other useful input.
I can see why the medics think there is no physical cause as the movements she can and can't do are odd. I don't want to put her through unnecessary investigations. However things are getting worse and worse with no end in sight.
So HELP!!!!
(And well done if you got to the end of that lot.)