My son, 28months, has an appointment with another Paed Nureo on Wed. He specialises in metabolics and is a researcher as well. His current Nureologist, Paed and metabolic specailist are hoping this Dr might be able to shed light onto what is happening.
I am just putting together a "compilation" DVD of his event's etc from 7months old, when he was first admitted to the ED. It is so hard cutting it down but I know he won't have time to watch it all. I am also adding a set of notes with it which says what the clips are in a couple of words so he can go to the ones he might be interested in. At the moment the DVD is around 45min long but I will only show him the more recent ones but we leave him with the DVD in case he finds time to watch it later.
My sons Paed has been so fantastic in getting us an appointment with this specialist as she said he is the one who she thinks might be able to get one step closer to working out what is happening. She even went down and handed him a DVD of my son, but the specialist has lost it.
I know she has sent him a lot of info and am writing myself a list of questions to ask.
I would appreciate any advice on what to ask. I think his appointment is scheduled to be around 30minutes so I find it almost overwhelming to think of how I can get across my sons issues in such a short time, as he has so many "quirks"/behaviours/types of seizures etc.
Might sound bad but I am almost hoping the bad patch he is having lately continues through to Wed so that the new specialist can see it first hand.
I know I am probably building up to much hope for this appointment but my theory is that one day someone has to be able to work out what is happening or even better our little man will outgrow what is going on.
Donna
I am just putting together a "compilation" DVD of his event's etc from 7months old, when he was first admitted to the ED. It is so hard cutting it down but I know he won't have time to watch it all. I am also adding a set of notes with it which says what the clips are in a couple of words so he can go to the ones he might be interested in. At the moment the DVD is around 45min long but I will only show him the more recent ones but we leave him with the DVD in case he finds time to watch it later.
My sons Paed has been so fantastic in getting us an appointment with this specialist as she said he is the one who she thinks might be able to get one step closer to working out what is happening. She even went down and handed him a DVD of my son, but the specialist has lost it.
I know she has sent him a lot of info and am writing myself a list of questions to ask.
I would appreciate any advice on what to ask. I think his appointment is scheduled to be around 30minutes so I find it almost overwhelming to think of how I can get across my sons issues in such a short time, as he has so many "quirks"/behaviours/types of seizures etc.
Might sound bad but I am almost hoping the bad patch he is having lately continues through to Wed so that the new specialist can see it first hand.
I know I am probably building up to much hope for this appointment but my theory is that one day someone has to be able to work out what is happening or even better our little man will outgrow what is going on.
Donna