hi,

I have a 2 year old little girl with global developmental delay and generalised hypotonia, shes had her assessments and blood/urine tests and they put her at 12 months, and her results came back normal, except her iron, she was actually low on iron and started on medicine for that in August. So they dont really know shes why she is, just said its one of those things and will moniter her with another full on assessment next year.

Anyway, yesterday and today I have noticed that her legs seem extra weak, and she seems quite off balance, shes been falling over alot more than normal, and im scared its the manifestation of a degenerative disorsder, when iv been watching ehr its almost like her legs are giving way, i just wondered if anyone else has had this exerience and whether the tests she had done before would have picked up a degenerative dirorder too?

Sorry for the long post, just really worried, and also glad to have discovered this board.

Thanks
Char xxx

Make a pregnancy ticker

hi, just wanted to say a quick hello and hope you don't worry too much.

My little boy Daniel had both global developmental delay and hypotonia, which are used soooo much in medical situations.

He was born with lots problems and as time went on I realise that the medical profession either adds to the list or changes what they think is going on.

It is great that they know she is short of iron, so that can be helped. She is still your little Evie and you are doing the best for her by keeping an eye on things.

HOpefully someone else on the board will be able to answer your post, just wanted to say hello!

lisa and daniel xx

Hiya,

I'm sorry i dont have experience of your daughters condition but wanted to welcome you to the board. There are lots of us on here and hopefully someone will be able to answer your question.

Do you have a consultant you could call for advice? I wouldnt want to leave it a year as its causing concern, maybe your dr can offer further advice? Dont be afraid to shout, lots of us have learnt its the only way to get help. 

Sorry cant be more help, please stay around, even if its just to let of steam!

Love Sara x