Delicate Balance

Lily has had an ear infection every month starting in January. At her ENT visit, he recommended to not only replace her ear tubes for the 4th time, but to remove her adenoid. Since she seems to really have trouble with her ears, we agree that it's the best option at this time. Ear issues tend to increase seizures quite a bit, so as we started to see more and at first it was easily attributable to ears; however, the seizures really started exceed what we would expect with just ear problems so we got labs and neuro took a look this week. Well, Lily's drug levels dropped by at least 1/2!! She's had a big growth spurt which could be to blame, so we went up a few days ago on the Clobazam and starting yesterday we're going up on the Zonegran. With the titrates, we've gone from a few small and often one long 3-4 minute seizure down to about 4 (45 second seizures a day). More and shorter seems to be better on her developmentally as well. But once we start moving meds, it makes her groggy and understandably fussy. We'll also be increasing her Afinitor from 5mgs to 7.5mgs. After 2 weeks of going up on meds, we'll then spend 2 weeks going down on Keppra (a seizure drug) to see if it helps with her mood---Keppra is notorious for causing behavioral problems. We've lowered it before and seen good results but didn't want to lose our sweet spot of near-seizure-freedom. But this time we'll be getting rid of it for good. At the end of all these drug changes over the next month, she'll have surgery May 29th. We're definitely concerned with how we'll get meds down after the surgery. It's so many pills and if her mouth is sore, it could be an issue. We can always crush all the pills and push them in liquid via syringe, but that's a miserable route for all involved---especially Lily.

All that said, her development is still doing pretty good considering. She has her new orthopedic shoes and is doing a great job with practicing standing. She's doing great with her teacher, Ms. Sharon, and swim has been a blast with Ms. Joy. Unfortunately, swim has to hold off until the surgery, but then it will resume. She is still doing horseback riding, but her instructor has been ill and with Lily's lowered immune system could not go, but she'll be riding this week.

Hopefully we can find our sweet spot again with low seizures and forward-moving development. It's always a delicate balance between seizures and cognition, and we have often found that the more control we have over one, the more we lose of the other, but as the Afinitor continues to work on those brain tumors, the more hope we have that we'll one day find Lily is seizure-free and cognitively clear.