Just a break in my recounting our steroid endeavor while I get picture put on disc to post.
Currently I am weaning Soren off a drug called Zonegran. He's been on it for over a year. We knew it wasn't really working before we started the Lamictal (the drug that IS working). But once he stopped seizing, we weren't sure if the two drugs were working together, so we kept him on it. Finally, after being seizure-free for so long, we decided it was time to test if we could remove this drug.
Why? Well, Zonegran has cognitive side effects. And since Soren's development has been so slow-going, we felt that if we can improve this by removing an unneeded drug, it was worth the risk of bringing on the seizures.
The weaning has been going well. But one of the issues with weaning an AED is withdrawal seizures. Now these aren't seizures that are being controlled by the drug. They are seizures that appear due to the body adjusting to the removal of the drug that it's gotten used to.
The interesting thing is, there are drugs that are known for withdrawal seizures, like Phenobarbital (which is a bitch to get off) and ones that are NOT known for withdrawal seizures, like Zonegran. It has to do with the kind of AEDs they are and chemistry and the brain and stuff I'm not smart enough to understand.
I actually tried to withdraw Zonegran about a year ago. But Soren started seizing more when I did it, so I spoke to his doctor and was told the Zonegran doesn't caused withdrawal seizures. So we thought it was doing a tiny bit of good and went back on it.
But here's the thing, and I mean no offense to all the amazing doctors who I've been in contact with, but they are wrong. Weaning the Zonegran is (at least in Soren's case) causing withdrawal seizures. And I have confirmed with other parents that they have had similar experiences, despite what the doctors say.
And I can say this is true because every time I drop Soren down, he'll have about 2 days where he has 1-3 Absence seizures, and then it's over. His body adjusts to the lack of Zonegran and he stops seizing. And coming off the Zonegran has been SO great--Soren is much more alert, talkative, and engaged. It's amazing.
I'm writing this right after he just had a 10 second Absence seizure where he held his breath and his lips turned a bit blue. It's very disturbing. But I dropped the Zonegran down another pill this past Saturday, so it's to be expected. Still it's not fun.
Two more weeks and I remove the last pill. Once it's all out of his system, I'm really interested to see what my boy is like.