Baby Z started getting sick with a fever late last night. It seemed to come on pretty fast, and none of us are sick, so I guess it’s just a little virus. Nevertheless, fevers freak me out after IS, since his worst cluster of spasms ever occurred in conjunction with fever.
Now, he is off all IS meds and is spasm free, though he remains on topiramate as a preventative medication. But I have read too many stories about the seizures returning, sometimes with a vengeance. Actually, as much as I want to help other moms and dads out there with newly diagnosed babies, I’ve had to step back from the forums and message boards. I just can’t keep re-living it. Yet I feel incredibly guilty for being lucky enough to have that option, if that makes any sence. It’s weird, because I never felt guilty that my oldest was healthy. But when you’ve been to your own personal hell and back, it changes you. Then I feel guilty that I consider what we’ve been through my own personal hell, because I know others have been through worse. All in all, we had it pretty easy for an IS case. There are other moms on the message boards whose kids have never gotten the seizures under control, and they have run out of medical options. They don’t get to see their child develop, at any pace. They don’t get to enjoy smiles or mischievous grins or rolling or sitting. They just endure endless doctor and hospital visits and meds. Lots and lots of meds.
So, when I’ve been up on and off all night worried about a sick baby, and he wakes up and gives me a huge smile, even though it’s obvious he doesn’t feel well, and then puts his arms out to be picked up (a new development), I just can’t help but feel incredibly thankful. Thankful, yet guilty that I have the opportunity to worry about something as trivial as a fever.
Our Journey with Infantile Spasms 