going for our second opinion tomorrow for dd scared

[trace2]

for two years now being seeing a neuro for her seizure type things she as hes got now where so having a second opinion at a different hospital and so scared we will never find out.

just hoping we not made a mistake !

wishing you all the best. Hope it all goes ok and that even if you don't get any answers tomorrow, you get a better plan towards finding some

Is she on any medication at the moment?

no she as abnormal movements only been given rescue meds

Finally !
Good luck, hope this one is more useful and you get some answers!

thanks me to am scared am hoping for to much, she as come on so much am scared they will only see the good side, because itsbeen going on for to long

Good luck Trace! Are you going to LGI? We have a lot of confidence in Dr F if that's who you see - mind you, most times we see a Registrar now rather than him which has caused all sorts of lack of communication!

Missed this one last night! Good luck for today Trace.

thanks everyone he says he thinks she as Channelopathy caused by sodium imbalance and BENIGN PAROXYSMAL TORTICOLLIS was very pleased to see her as the BENIGN PAROXYSMAL TORTICOLLIS is very unusual and was fascinated to watch the videos we gave him. but i got upset watching them again not nice seeing her like that no matter how many times we see it!! at least we have an idea now whats up but its where to go from here?

fatzak yes it was and yes he was very nice and good hes going to do some research and get back to us. how did you go on at london?

I'm glad he has some ideas Trace. I think he really is a top dog in the world of seizure disorders.

PET scan went fine - DS just got on with it as usual! Managed to fit in a whistle stop tour of London as the hospital is right opposite Big Ben! We are now just waiting to hear which is always the worst part.

glad it all went ok and at least you made the best of it while you was there! and yes the worst part is waiting do you know how long you have to wait? please keep us informed ?

No idea how long it'll be. Will let you know as soon as we know anything.

good luck !!