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Old 02-08-2012, 03:39 AM
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WHat questions should I be asking Nureo on Friday?


Hi, Any advice on what questions I should be asking my 1yr olds Nureo at his fridays appointment?
So far my questions list is.
Does he have a theory behind how his events/seizures now are happening when he eats which originally he said he douted that would ever happen?
Re safety when eating now? His staff at childcare and us are worried that he may choke?
Could stress be a trigger for his "bigger" events?
In last email Nureo commented that he thinks the best we can hope for is that my son will be "vague" what does he mean?
Is it worth now that he is 1 considering an MRI?
We are worried now he is starting to pull himself up that he may hurt himself more if he has an Absent seizure, what is is opinion on this? He currently goes right foward or to the side, but not sure if it would actually cause him to fall over.
Also questions re his lattest "quirk" of head to shoulder spasms, nearly always in clusters?
Also we are going to ask him how on somedays he seems to not be able to stand, mainly in the evening?

Do you think we should ask our Nureo if Meds might help him? We are unable to do much re diet at the moment as we are still working through multiple food intolerances with him but these are improving greatly.

Any advice would be greatly appreciated.
Donnajane
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Old 02-08-2012, 02:33 PM
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I think you've got a great list to start with. Defnitely ask what treatment programs may be appropriate for a one-year-old, including medication. You might want to ask if there is a specialist in the dietary approach that could give you guidance and advice.

Hopefully the neurologist will be able to give you some answers. If he really isn't helpful, or doesn't know what steps to take, then you may want to go for a second opinion. If that's the case, you should ask about getting medical transcripts of what's been done so far.
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Old 02-08-2012, 04:22 PM
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GREAT list! I soooooo hope you get answers. I don't have anything to add, just to tell you you are doing great, and good luck!
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Old 02-08-2012, 06:32 PM
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Thank you for the responses. Like a lot of you I would even just like a form of diagnosis as to what is going on with my son. Will let you know how we get on.
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