where can i go to get a diagnosis for dd posturing?

[trace2]

our neuro as no idea, she postures for hours at a time, she stuck like it all she wants to do is sleep through it, so am trying to find out myself, whos the best neuros around?
how do i go about asking them, ive even thought of writing to to them all to see if they know

I would recommend dd's neuro and paediatrician as being experienced and open minded.
Have your docs no idea at all?
Have you got any video of her doing it to put on Youtube

Are there any epilepsy/seizure online support groups trace? Could you get any personal recommendations from them.

Otherwise a big children's/teaching hospital. Who would your GP recommend other than the one you've seen?

hi they say maybe a movement disorder? but not know which also they can not understand how some times she goes unconous, ive spoken to the elepesy nurse today she says she no idea how shes posturing for hours at a time and can not move, its really getting me down ive looked at forums of moverment disoders and other i just dont know what to do next

as for youtube i have on phone videos and no conector

sorry to be thick but what do you mean by posturing?

RIGHT, her head goes to right and her body shaped like a babana and she can not move out of it

banana i mean

I get it .
sorry to have to ask.
is she on any medication for the seizures?

its ok no shes only 18 weeks old

i have blue toothed to her neuro though

We had worries about DS not responding to visual stimuli, so I took my DS2 to the hv, then she thought he should see the GP, and he got on the neurologist at a big London hospital straight away.

Also I was lucky enough to take DS2 to another specialist for another unrelated problem (well we think it's unrelated - undescended testicle) and while I was waiting I saw the name of the neurologist the hv had mentioned to me in passing.

I emailed him, asked him for a private appt. He rang me the next day to arrange an appt for the next day - when he found out we have no private health insurance he said he would push for DS to be seen quickly in the NHS hospital, and two days later he was in.

Sometimes you have to be pushy, and with DS it worked...(we still don't know exactly what is wrong with him though - he was a similar age to your DD when all this started - he will be one next month and while he have some idea, they haven't actually officially dxed him with anything yet.

Good luck, I hope you get some answers quicker than we are!

Trace, whereabouts are you? I am in London, if you're near here I can give you the name of DS2's neuro?

mm22bys i live in yorkshire but am willing to travel, could you give me the name of him please, and which hospital? whats is wrong wi your son? if you dont mind me asking

our neuro is surposed to be good hes at the sheffield childrens hospital, am not putting him down, just want to know whats up wi my baby

It's hard not knowing, I feel like if we knew what was wrong, rather than just treating the symptoms, we could help him more.

I have CAT'ed you the names of DS2's neuros.

Good luck,

I have no experience of this sort of issue, but would have thought Great Ormond Street in London or possibly Alder Hey in Liverpool might be a good place to look for a 2nd opinion.

mm22bys not recived it yet

Just CAT'ed again. I'll try again late tomorrow, early Thursday if it still doesn't get through.

Good luck

still not got it

my email is tracypearson6 at hotmail dot com

Hi Tracy, have emailed you, let me know if it doesn't come through.

All the best,

hi thank you i got it, ill e mail you later just going out again thank you