Update Wed apt

donnajane

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Well sadly as expected I came away disappointed from the apt with the Nureo today. We have been refered onto him to have a "fresh" pair of eye's look over my sons history etc and this nureo has a special interest in metabolics. Of course our son was having one of the best days I have seen in a long time. His speech which has been almost going backwards, suddenly had a few recogniseable words and the only NQR thing he did was his eye's rolling up and to the side briefly but of course the Nureo was writing notes and didn't see it.
Basically the appointment ended up going only for 15minutes, he had obviously "squeezed" us in on his lunch break and when we got in there he had misplaced the DVD our Paed had handed to him months ago, before he could watch it, and also the letter from his paed with all of my sons notes/test results on it had not been entered into the computer so to him he was seeing a little boy who appeared pretty much normal. I gave him a few print outs I had done, re family history, tests he had had, our questions re him and also the compilation DVD. The DVD was a collection of 8 short DVD's covering the progression of his condition and i had also typed up a brief summary ( 3 or 4 lines) re what was on each of the DVD's. He said for us to make an appointment for 3months time and he would try to find time to watch the DVD and read over notes and then if he felt it needed get back in contact with us earlier for an early appointment. I know the hospital does a great job but to me everyone there is so over worked and this is now the 4th time some of his paper work/results etc has gone "missing".
So now the wait and see. Even Child care could not believe how good a day he had today compared to recently. Of course tonight he is so exhausted.
Oh well maybe he will actually sit down and watch the footage and see what his other specialists see a little boy who has everyone confused and hopefully be able to offer us some advice.
Donna
 

Nakamova

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I can't believe that the specialist couldn't even see you for a full half-hour! Except I can believe it. Similar things happen here. :(

I hope the neurologist takes the time to go through all the information you prepared -- don't be afraid to be a "pest". Don't wait for him to contact you -- go ahead and check in within the month to see if he's actually looked at the DVDs. And go ahead and let the referring pediatrician know what happened during the appointment. It doesn't hurt to push a bit.

I'm glad your son was doing so well, even if his timing wasn't perfect. I hope he continues to have more good days than bad.
 
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