Help for my 9 year old daughters knees giving way

[jennieg79]

HI i wonder if anyone can help ill try and keep as short as poss

my 9 year old daughter was diagnosed with arthritis in 8 joints at the age of 17months. We battled for 6 months to get the diagnosis and were told on numerous occasions that we were  pushy parents anyway got the diagnosis and started methetrexate, got the got the arthritis under control until at age 4 they tried her off the medication and it came back after 6 months and was worse than ever.. got it mostly under control then she developed Reflex sympathetic dystrophy (RSD) was on crutches and got intenses physio, sorted. the next year she got RSD again this time the pain didnt got after physio so they put it down to some bullying (which i got sorted with the school and hasnt happened in a year

when we go for her 3 monthly check up they ask her hows they bullying going and does she like the people in her school, totally fixated on this, they obv think her pain is psychological. shes been to a psychologist for pain management and is being discharged in 2 weeks so on the mental health side of things is ok.

we were told that she is hypermobile a year or so ago and to give her paracetamol before say going to the park, it was made out to be not a serious thing. heres were im getting to the problem.....my daughters knees keep giving way, sometimes one leg sometimes both. she says it feels like her foot goes numb when it happens. the other day it happened on the stairs and she screamed in pain she said it felt like she had strings in her knee and they were 'pinging'  im making an appointment with her rheumatologist who i do have much respect for as he was the one to diagnose her arthritis all those years ago and end her suffering, but theres such a fixation on this bullying that isnt going on that im afraid they are missing a chance to diagnose my daughter and treat the problems that she has now.

if anyone has had anything similar of a member of the medical profession can help i would be grateful thanks.

[jennieg79]

Thanks very much I'll have a look at that website.

[achilles2]

I am glad you have an answer, you might be interested in this website:
http://www.hypermobility.org/

achilles2

[jennieg79]

Thanks for your comments. we finally have a diagnosis of hypermobility syndrome. shes going to be getting physio so will see how it goes x

[achilles2]

Has anyone checked to see if she has celiacs as that can affect nerves. Also has anyone looked at Eherls-Danlos Syndrome http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

I hope this helps,
achilles2