Tag Archives: seizures

Armand’s Big Day

I’ll keep updating this post as the day goes on and we talk to more doctors before or after each procedure he’s having today. First he’ll have an MRI, then up to the OR for his lumbar puncture, and eye … Continue reading

Posted in Medical | Tagged , , , , , , , , | Leave a comment

Day Three

Today was a pretty easy day. We met with Dr. Karachunski about Armand’s MRI, which came back unchanged from his previous tests as far as progression and white matter.  He said basically to keep doing what we’re doing, that we … Continue reading

Posted in Medical | Tagged , , , , , , , , | Leave a comment

Not Enough Sheep In The World

We’ve been going through a weird spell with Armand’s sleeping patterns. Part of this seems to be caused by the Lamictal medication he takes for his seizures, which has a side effect that it can make people hyperactive and restless. … Continue reading

Posted in Whimsical | Tagged , , , , , | Leave a comment

*wink wink* *nudge nudge*

We’re finding out all sorts of ways Armand can be susceptible to seizures. We did know that if he was overly tired, that was a trigger. If he wasn’t properly hydrated, that was a trigger. Now we know that constipation … Continue reading

Posted in Medical | Tagged , , , , | Leave a comment

Riding Solo

Longtime readers may note that Armand and I used to engage in “cookie nights”, where I would open a box of Soft Batch Chocolate Chip cookies, and he would systematically claim most of the cookies for himself by simply taking … Continue reading

Posted in Whimsical | Tagged , , , , , | Leave a comment

That’s Not What We Mean By “Seize The Day”, Armand

With all the good news, Armand’s bound to have some rough days to balance it out. Yesterday was one of them, having 6 seizures including one at school that lasted 2 minutes. He also makes new sounds that are, well, … Continue reading

Posted in Medical | Tagged , , | Leave a comment

Rx for ASH

Just in case we get some parents or family members of GM1 children looking for help, I thought I’d post an updated summary of what El Jefe is currently taking daily: Treatment 3 x 100mg Miglustat (Zavesca) 1 x 600mg … Continue reading

Posted in Medical | Tagged , , , , | Leave a comment