Not sure what to do anymore?

donnajane

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My little man had yet another NQR Friday. I had several calls from child care to update and let me know he was NQR. He had diaphragmatic seziures while having his nap and his legs started jerking at the same time. His mood was up and down all day from suddenly being in tears to laughing, then to dripping in sweat. Child care were great and filmed it for me. I went and got him early and was just so thankful that he has an aide and that his child care is at my work.
I took him to the GP but of course he was in a "good" period there although on the way he had way looked like a "vague out" , his eye's briefly rolled in the GP's office but of course he was not facing GP so he didn't see it. I showed the GP the journal entries from child care for the day 6 pages in total plus told him I had footage. He said he was at a loss as to what to do now, I think he could tell I am getting more worried as these NQR periods seem to be happening so much more. The fact that we know he has a brain lesion I am sure is what adds to my worry more as with the increase in NQR periods I do wonder what is happening with it has it grown etc. He said to make sure I emailed his nureologist, his usual one, tonight and maybe suggest to him and his paed re admitting him to hospital to monitor him. That I would love as then we would have more of an idea if it is behaviour or seizures etc.
Sorry just had to write my concerns down as I feel like i am banging my head against a wall so much these days. We kept getting told our little man is NQR but no idea on how to help him.
Donna
 

Nakamova

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Hi Donna, so sorry this is happening and that the neuro specialist wasn't inclined to help right away. Definitely see if your regular neuro can help and has any other ideas. I agree the hospital monitoring is a good idea. Keep pushing for this.
 
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