Add another med to the mix

Today I thought I was ready to do something I hadn't done yet -- I did a literature search on infantile spasms and stroke. I knew I wouldn't like what I found, although of course I was hoping to find something reassuring. I've been telling myself that Lively is disqualified from the Symptomatic IS category because his stroke occurred so long ago, likely at the time of his birth, or shortly after, and he has developed normally until this point. I told myself that any major motor deficits would be obvious already. The fact that he interacts normally with us must be a great sign, right? Well, it turns out, this isn't the case. He's still very much at risk for epilepsy, for motor delays, even for hemiplegia. Here's one way to summarize (West syndrome is a triad of spasms, the EEG finding that Lively has, and mental retardation):

Infants with idiopathic West syndrome have a better prognosis than do infants with symptomatic West syndrome. Only 14% of infants with symptomatic West syndrome have normal or borderline normal cognitive development compared with 28-50% of infants with idiopathic West syndrome. Mental retardation is severe in 70% of patients, often with psychiatric problems such as autistic features or hyperactivity. Infrequently spasms may persist in adulthood. 50-70% of patients develop other seizure types and 18-50% of patients will develop Lennox Gastaut syndrome.

Today I read some of the studies that generated these numbers. I probably won't do that again for awhile.

Meanwhile, Lively is still having seizures. They're subtler than they were when we were in the hospital, but they're still there. We hope that what looks like an improvement to us is truly an improvement. Meanwhile, we continue the ACTH, which is making Lively fat, cranky, and at risk of serious infection. I plan to write in more detail about ACTH soon, but I haven't felt ready to tackle it yet.

Speaking of infection, we were told when Lively was discharged from the hospital to call Lively's pediatrician if he had any signs of a cold. The last few days, Lively has developed a new cough and a runny nose, not something for which I would normally call his doctor, but I called today. The doctor had us come in, and Lively has an ear infection. Again. This is his third in two or three months. So now Lively is taking:

1. Omnicef for his ear infection (has side effects like diarrhea)
2. ACTH for the seizures (billions of side effects, don't want to think about them right now)
3. Zantac because he's at risk of GI bleed due to the ACTH
4. Bactrim for pneumocystis pneumonia (PCP) prophylaxis. PCP is an opportunistic infection commonly found in AIDS patients. That's how suppressed his immune system is right now.

So that's 3 oral meds, and 1 shot. My poor little guy.

Here's a picture of Lively today. I like this one because he's doing his happy dance in it. We don't see that so much these days.

You can really see how chunky he's getting in this one. I still believe that there's no such thing as a too-fat baby!