Update on Isaac

[IsaacsDad]

His condition waxes and wanes, and currently is waxing alas.

He does a repetitive walk at home, and he's started doing it away from home. He's started having obvious absences again. Both are changes since Xmas.

The paediatrician still isn't convinced it is neurological but is ordering a longer EEG to see if it shows up anything the earlier one didn't, but I'm pretty convinced it is consistent with absences, and complex partial seizure. I've learnt enough however to realize neurology is really hard and all the symptoms are pretty similar and overlap.

Have started uploading videos for the paediatrician's colleagues, this one is atypical, and far worse than most of his episodes. He hasn't done anything like this since the summer.

youtube.com/watch?v=BYFPRmIeteg&feature=youtu.be

However the extensive movement during his episodes is the thing which seems most different from childhood epilepsy, I understand it can occur with one of the forms that usually occurs in older children.

Pondering finding some other opinions on the videos but not sure how useful they are without other measures like EEG. Any good places to ask?

Otherwise his progress is good (school, other health), which of course drops the urgency of investigation, which I understand but hey he is my boy, and I naturally want to know what the diagnosis is, and what his chances of growing out of it are.

 

[Nakamova]

Thanks for the update, I hope you get some more answers soon. How easy is it to get some additional opinions from other pediatric neurologists? Might be worth a shot, just to get a fresh perspective and maybe some peace of mind.

 

[donnajane]

Thanks for the update. My almost 2yr old still has the specialists looking for answetrs, they have been looking sinve he was arond 7 months old. They know he has events but so far 5 pretty clear EEG's, last showed a slight slowing on the back right side of his brain and his eye's also rolled back a little with the flashing lights but no alteration on the EEG. Thankfully his Nureo ordered an MRI when he was 18months expecting to find nothing really but they found a lesion on his Putamen, deep in his brain that is why it wasn't picked up on the EEG's. He is having a follow up EEG is juts over a week to see if the Lesion has altered and if they can get a better idea as to what it is. His Nureologist said he does not know if the lesion is causing what is happening to him. He if currently on Tegretol but still has his strange things, some are like sparks ie strange eye's going up uncontrolled/vacant quickly, others longer like his absence events. We are just so lucky that he had a lonnger event last time we saw his paed as even she said no words or even video could explain what she witnessed and how he was.
It is so frustrating to see our son be so good and "normal" during some periods then other times act in a way which is quite worrying.
I hope you get some answers soon.
Take Care.
Donna