James' Journey with TSC

Unfortunately this isn’t the update we were hoping to make. James has had four more episodes of eye deviation that we had mentioned in the last post. This indicates that for whatever reason, his infantile spasms are trying to come back.

Now the hunch is that James’ body is fighting against his current medication, which is both a good and a bad thing. It means that he is very resilient, but it also means that his body is not wanting to just roll with the medication he’s taking to suppress his spasms. After discussing this with his epileptologist today, we decided the best course of action will be to start an oral corticosteroid.

A corticosteroid is a little different than what you’d imagine for a typical steroid; it works to suppress the body’s immune cells, which is presumably what is working against James’ current medication. The hope is that if we lower this inflammation caused by his own immune cells, then his body will more readily work with his anti-seizure medications and suppress these spasms again. It unfortunately does come with some not so pleasant side effects, ranging from mood swings and broken sleep to a higher risk of getting sick short term, amongst others.

This also means that James will still need another EEG in about two weeks to see how his brain is looking. The hope is that he will have a normal EEG and that we won’t need to look into alternative options, but we won’t know until after the 13th what that really could be. These aren’t his favorites (or ours) but he did really well last time and we are hoping he will do excellent again.

All this being said, we could really use some prayer over the next few weeks. Right now, James takes about 9.5ml of medication twice a day, and he struggles quite a bit with that as it is. His new medication is 15ml once a day, while still continuing his current medication. Prayers that he would be able to tolerate all his medication are so needed, as well as prayers for no or minimal side effects, and of course the prayer that this works and brings his spasm-like activity back down so he can continue to progress.

While this feels like another blow we didn’t need, God is still good and He is still watching over our family. Thank you all for praying.