Apt Wed any advice re questions to ask.

donnajane

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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
 

Chelsea

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donnajane, are there any trends that you have noticed? do they happen more in the morning or more toward evening? is he allergic to any foods? are there any correlates to his seizures, or outlying activities that may mask what is going on? does it happen when he is watching tv?
It sounds like you are loaded for bear with the information that you already have compiled; I'm impressed. I've gone to a specialist, unfortunately, and put my eggs in one basket for the definitive answer. It sounds like you are cool, calm, collected, prepared, and positive. Moreover, you sound like a terrific Mom. I don't have any children, so I can't even imagine what you are going through. I will be praying, okay? Let us know. Much love, Chelsea
 

Nakamova

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First off, ask if the appointment could be an hour long instead 30 minutes!

Possible questions:
Are there are any tests that the specialist would suggest? If so, what would they help rule in or out? Does the specialist have experience with different meds or treatments that would be worth pursuing? Does you guys prior MRI result have any relevance to his symptoms?
 

donnajane

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Thank you both so much the suggestions.
Our little boy is still having a bad run today, having periods of being very unsteady and NQR just hoping he can be like this on Wednesday to show the specialist firts hand what happens. I would rather him be in a good patch but even his paed has said that although she has seen footage of what happens and in it you can clearly see he is having trouble seeing it first hand happen in front of you is a whole new experience.
Fingers crossed this appointment gets us one step closer to what is causing our precious little boy's issues.
Donna
 

alivenwell

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I'd ask if a Ketogenic diet is recommended for your son. It may be hard to follow, but little kids respond to that diet well.
 

Chelsea

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Thinking of you today, donnajane! Best regards for a wonderful appointment. Please let us know how it went. :) :) :) :) :) -- My good friend and I have texting 'smile wars'. It always brightens my day.
 

donnajane

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Thanks for this I put a separate post re his appointment. Am a little bit deflated after it but just hoping the Nureo does what he said and spends times going over my little mans case.
Thanks again for asking I really appreciate your support.
 
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