Hopefully getting somewhere with dd1, possible low muscle tone.

[Marne]

6 months ago i spoke to the HV about dd1's legs and herd nothing. Dd2 had a check up last week so thought i would ask again as dd1 is getting upset as she finds it hard to run and keep up with her friends and has also been having pains in her ankles.

Anyway i have just had a phone call from the community school nurse to say she is looking into it and will phone the school today , she said dd1 may need to see OT if there is a problem (which there deffently is), she said it could be growing pains , i tried to tell her that dd1 has always had problems with her legs and movement and struggles to walk far.

I'm still baffled by what the problem could be, at first i thought Dyspraxia but she doesn't tick all the boxes (she's not clumsy and has great pencil control). Its almost as if she has no muscle, she can't pedal a bike, struggles to push doors open and when she runs she looks really stiff. Could it all be sensory from her Aspergers?

The nurse suggested i take her to the GP, i know i should have taken her a long time ago but its a night-mare trying to get her there as she hates going to the doctor.

Loudlass seemsyour wondering samething ,If want totalk yell on Fb , caninbox me

Loudlass, Pheonix -
The test will atke some weeks to come back but please let me know the results !!
Hope I have been of some help, I have been in the situation were you know some thing is wrong but no one can tell you what it is such a relief when you finally get a Dx and know you are not going mad.

Thank you oddjob#

And yes thatsdefintley the case here , thephysio we been seing private not nhs sincethey were crap ,reckons lot moregoing on

will do sadly will take sometime here since just moved and we got to be refered to new paed .

Though ds sees neuro next month will ask

Pheonix - Neuro should be able to arrange test.

I'm going to the GP on monday. Even my mum is totally convinced. I want to get this test done. My mum's just told me on the phone that her mum's brother has muscle problems as well.

sorry for the hijack marne

going be demanding asking him to do

it could be worth asking to be seen by Professor Muntoni who is charge of the Neuromuscular unit at Great Ormond St hospital (the Dubowitz Muscle Centre) he is absolutely brilliant and I think has seen it all - my DD was looked at for myotonic dystrophy but in fact has something else, Prof Muntoni is fab and very kind, ask if you can be referred there.

We see Prof Muntoni too, he is great, a bit puzzled by my GS as he kept going up to him and tapping him on the knee to say hello, he didnt seem to know how to react.

the top expert on myotonic dystophy is at The John Radcliffe Hospital, they have an amazing unit dedicated to the condition x