Thanks so much everyone for all of the input, it is much appreciated !

Alison's syncope is still really bad. She is having between 25 and 30 attacks a day. I have posted on several message boards about Syncope and they all say that this ammount of attacks isn't normal but none of them have a pain condition so I am not sure what to think.

She seems to have Syncope attacks when there are flashing lights a lot which to me, sounds a lot like Epilepsy although her Neurologist says it isn't that as they can also occur without a known trigger.

Mike - Thanks for the info. Ali used to collapse quite a lot when standing up and still does however it has got a lot worse now and she can just be sat watching the tv and will collapse and have a fit. Her PM Doctor is at Sheffield Children's Hospital and he is good but has never seen this happen to anyone else so doesn't know what to do. I'm wanting Ali to get transfered over to the adult PM Drs and Neurologists but unfortunately, will have to wait another 6 months until she is 16. I have emailed Great Ormond Street (leading childrens hospital in the UK which she also attended) as I can remember her PT talking about collapsing and RSD but they have yet to reply.

Sandy - I am so sorry to hear that your daughter has RSD and the same problems as Ali also - as a parent I understand how hard it is to watch your child deal with all of this so if you ever want to talk, feel free to PM me.

A lot of what you described with Lindsay sounds like what Ali has also. Her blood pressure seems to be worse first thing in the morning when she wakes up, early and mid afternoon then last thing on a night though she does have a lot of problems during the day also, they just aren't quite as bad.

Ali is on oral Ketamine and it was thought that maybe that could be causing some problems but she has been on it for about a year (though she only takes it when she's in a really bad flare) so her dr said it can't be that. Her PM Nurse wanted to see if it would be possible for her to take it all the time to see if it would even out her Blood Pressre so its interesting that you said Lindsay's Blood Pressure seemed better after taking it.

The Neurologist hasn't put Ali on any meds. He said it's just a case of 'learning to deal with it'. Easy for him to say but it's really affecting her life now - she can't go out as she collapses. Thankfully she has a supportive boyfriend who helps take care of her whilst I have to go to work.

What you said about the ear was interesting - they haven't mentioned that at all. Ali did have an EMG to rule out any heart problems but it came back normal so the Neuro said it was typical Syncope.

I am going to try and get a referal to another hospital or possibly take her to ER as we can't go on like this much longer.

As some of you know, Ali was supposed to have been having a baclofen pump to help control pain however her PM Dr wont do that now she has problems with her back. I can understand where he is coming from but on the other hand, we have been told that we will probably need to get the pain under control for her to stop collapsing.

Thanks again for the support - it's much appreciated!

Andrea