been to GOSH

[mieow]

Been to gos toay and they think that DD might not have CP after all!!! They
want to see the MRI when its done and nerve testing done.The doctor felt
that something else is causing her problems. She said that you can
see that DD has an abnormal gait but she isn't stiff and because
DD's balance has got worse they need to do more testing........
they even tested my reflexs. LOL.Hope its nothing bad, can just about handle CP

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Please keep us updated Mieow, will keep everything crossed for you and dd.

thinking of you all, it's a horrible time and the anxiety is awful(remember it well-no one wants to know the worst about their dd but it has to be done to step forward)keeping my fingers crossed for you that it is "just cp"
lol xxxxxx

Its been Cp for nearly 2 yrs and now they change their mind lou33 didn't you go through this?

I had friends who this happened to. They were given one diagnosis, went to all the support groups, slowly realised their ds wasn't like the other children, returned to GOSH and were given a different diagnosis.

Hopefully they'll do the tests and settle on CP. Thinking of you........

Mieow,you were one of the kind mums that replied to my very first post(mild cp or dev delay)Thanks for that!.Anyway i read this post with interest as you know ds2 was diagnosed with cp then after we came to terms with that were told its not cp.Know exactly how you feel-if its not cp then what is it-that question is on my mind nearly all of the time.
I have 2 sons,DS2 who i spoke about on my first thread and DS1 (4.9yrs).DS1 was low birth weight 3lb at 36.5weeks,and has suffered with glue ear since birth(hearing aids til 18mth old).
He has also had great trouble with gross motor skills,has awful balance and is still very behind his peers,its not until recently i,ve got concerned especially considering all of DS1's problems.He is having real trouble at school with P.E and cannot hold a pencil properly,making it so hard for him to learn to write.He also walks high on his toes.
At his recent visit to pead check up,she was not happy with with these gross motor/balance problems,considering DS1 problems-too much of a coincidence!.
Upon checking DS1's instep she noticed the muscle was intermitantly going into some sort of spasm,which she said was being caused by jumbling of messages from brain!
She has referred him for blood tests,investigation,occ therapy, and to a neurologist.
So hopefully I will be getting some answers with regards to both of them.
Good luck with getting a diagnosis for your DD, I know how a frustrating and worrying time this can be.Thinking of you.
I will post again when i have more info on my 2.
Chin up xx

Thinking of you Mieow and keeping my fingers crossed that it's all OK, I'm sure it will be. Please keep us posted won't you, XX

Yes I did mieow, I know how concerned you must be. The neurologist thought ds had genetic spastic diplegia, which mimics spastic diplegia cp but is progressive, so ds would have deteriorated and ended up in a wheelchair permanently. The second opinion of his mri concluded that he had periventricular leukomalacia though, which is consistent with cp. There is a blood test for genetic sd, very complicated and only done at St Georges in Tooting, London. It might be useful to know in case the docs start talking about that. If you want to email me privately use the addy in the skinuk website.