On infantile spasms

By 23rd December 2016 No Comments

Another day. Breathe in, breathe out. So, we spoke to our neurologist yesterday. Kai’s eeg showed signs of Hypsarrhythmia, which indicates infantile spasms, a kind of seizure. They’re going to up his dose of keppra, and start him up on a super high dose of steroids. 

Because the steroids compromise his immune system, and his blood pressure and urine need to be checked every few days. Womp womp. On top of that, we’re pretty sure he’s got some kind of cold/infection, which means he’s having more seizures. Womp womp. Upside is that we’ve just been moved out of the infectious diseases ward (not that he was ever infectious, it was just where the empty bed spot was). Good job us. Still, it’s so heartbreaking to hear his whimper of a cry when we’re so used to extreme hulk like rage.

So, the plan is to stay till Christmas Eve, and be back to the hospital post Christmas for an eeg. Fingers crossed we can stick to the plan. Cmon little guy, tell your brain to sort itself out.


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