So the neurophysiologist thinks whatever DS2 has, it's not CP...

[mm22bys]

We took DS2 to GOSH today for "nerve conduction studies" for more information. He had electrodes placed on his left foot, left arm (wrist and upper arm), and he stuck a needle into his upper arm and back, to see what response he got to a minor charge.

He said not to push him for results, and that he would think about things, and fax DS2's neurologist either today or Monday.

I think I saw on the monitor that he got a very strong response from his foot, but I may have been imagining things but I thought I saw practically a flat line from his arm.

He HATED what the dr did to his arm - they are so stiff, but the neurophysiologist practically ruled CP out.

We asked about the Wolfson Centre, but he said it's for children with a lot worse problems than DS2's.

I got really emotional walking into GOSH - I have heard so much about it over the years - have been lucky in that this was our first time there.

Hope we get some answers soon, he did tell us on the way out that he can't put our minds at rest, now whether he meant that in a general sense, or whether he found something, who knows....guess we should konw by this time next week (aren't meant to see neuro till Feb / March next year so hopefully he will either email us once he gets this dr's results or we will have to pester him, if he's not already sick of us!)

[needmorecoffee]

thing is, there's nothing wrong with the nerves in arms and legs with CP. The problem lies in the brain. Weird test to do.
You know what popped into my head, there was a little girl on TV, either in extraordinary people or some special children documentary, and she had stiff arms. She didn't have CP but I don't recall what she did have.

[mm22bys]

Hi NMC, I don't think he was testing the nerves as a test for CP, I think the neuro called the test to rule out other things - to get more info. Maybe they wouldn't normally have done the test anyway, the neuro did tell us that they had done a much more comprehensive testing program than they perhaps would have done for other children - he did say that it had been a great exercise for his team!

Maybe the neurophysiologist thought that DS2's general movements / appearance didn't present as CP. He said lots of different things can present with the same signs / symptoms anyway.

Who knows, I think I've said before I do know that he's too young to have CP definitely ruled out anyway. Several of the experts / professionals have said that he is a mystery...which builds heaps of confidence for them in us!

[TotalChaos]

I know very little about this area, but I do hope that you get a chance to talk the findings through with the neurologist early this week, it must be very stressful being left in suspense after the appointment.

[ShinyHappyPeopleHoldingHands]

a neurophysiologist??! What's one of those??!

[wrinklytum]

Big hugs xx.I hate hospitals (and I work in one!)Everytime you take the dc there your heart sinks...Hope you get a diagnosis soon xx

[mm22bys]

I still don't actually know what a neurophysiologist does TBH. At the clinic we went to I think they also do EEGs, etc.

It is frustrating.

He had an eye appt today. The orthoptist was able to do "age-appropriate" tests, and he didn't fail them (first time in DS2's life he hasn't "failed" a test...), and he was responding to things, but they are still saying he has Delayed Visual Maturation, so we have to take a "wait and see" approach.

I know it could be so much worse, but this "wait and see" approach is getting me down....if only the drs had a crystal ball...or maybe not....I guess all we really can do is continue to try to stimulate him as much as possible...

[TotalChaos]

glad that the orthoptist test sounds to have gone reasonably well. of course it's going to be immensely frustrating and worrying for you just being sent off and told to wait and see.

[tashm]

just wanted to email you to wish you well- can totally relate to this waiting game! x

[mm22bys]

Thanks all.

Tashm, I have been thinking about. My email is ingym23 @ h o t mail.com

[mm22bys]

Oops! Tashm, I've been wondering how you have been getting along!