Today Daniel was a sunnier version of himself. We might have dialed in a plan on medications for the itching and I think we stayed ahead of that better than yesterday. For those of you who didn’t see the FB post, Daniel got to the point yesterday where he just couldn’t take it any more and while I was downstairs getting a shower and tending to some laundry he started ripping the electrodes off his head. Thankfully the techs have been really nice about that kind of thing and they got him back up and running in not too much time.
This morning he was singing and being really pleasant. Then a beautiful young woman with long blonde hair showed up in the doorway and said she was the music therapist! Gold mine!! She had a large keyboard, half-size guitar, drums and a buncha other stuff. The boy was in his glory. She also loves Chris Tomlin and knows worship music! Jackpot! So I slipped out to do a little work and they had a blast. Apparently just before I got back they had held a concert for all the staff and they gathered around his door and he sang for them. Precious.
On a less cheerful note, things here are not going the way we had hoped and we will not be leaving here with a surgical solution for Daniel’s epilepsy. As much as I was afraid of brain surgery, and what recovery from that might be like, the prospect of deliverance from epilepsy for Daniel made it an attractive possibility. But for some reason, Daniel has not had any seizures in spite of several days completely off seizure medications. I have been very surprised by this and now have questions about whether we should be medicating him at all. His EEG has not been any different on meds or off meds, so aside from messing him up with side effects, I don’t know if they are doing anything for him. They might be, and the doctors won’t let us leave without them.
Anyway – we have been here for a week and there have been no outward seizures. We have that one subclinical seizure that went for two minutes without showing up outwardly, so all that does is let us know he has seizures we can’t see. This is not comforting. We do know that seizure originated in the part of his brain where he has damage from his brain bleed. Without any other seizures, we cannot say where they come from and we cannot identify an area where surgery might help.
We have the ESES diagnosis, which has multiple potential causes and just as many potential treatments based on the particular cause, but we don’t know which one that is for him. One one side there are 10% of normal healthy kids who have ESES and it never manifests in seizures and it never affects their lives in any way. One the other side you have a certain percentage of kids who are greatly impacted by ESES and it impacts learning and functioning and can result in significantly diminished quality of life. Some kids essentially outgrow it. Others are ruined by it. In a few months we will learn if Daniel has a genetic form of this. That is quite unlikely but must be determined because treatment is different for those who do. For now, Daniel will begin a steroid treatment which will probably last for 4-6 months. In 4-6 weeks he will need to have a 24-48 hour EEG again to see if it is working to calm down the very high number of epileptic spikes Daniel is having all night while he sleeps.
There is a condition called Benign Focal Epilepsy of Childhood and about 10 in 100 kids have it. Some of the patterns seen on Daniel’s EEG fit this profile, so the doctor is also floating the idea that maybe Daniel has this. Maybe even without the brain hemorrhage he would have had this. Most if not all kids outgrow Benign Focal Epilepsy of Childhood.
I struggle with these discussions. Do they even make statistical sense? It seems obvious to me that his brain injury plays a significant role in his seizures. If all these other possibilities could be in play, then Daniel is one of the unluckiest boys in the world, which I don’t believe anyway.
I am struggling with how things have been unfolding here. My hopes for a surgical solution for Daniel which could free him to learn and make progress at school are pretty much crushed. I’ve cried a bucket of tears here, and I doubt I’m done. I’m so disappointed and so confused and so unsure about how to put together the information we have gotten here.
Tomorrow a different doctor starts his two weeks on the EMU, and that doctor is Dr. Ajay Gupta, a well-known epileptologist. I am hopeful that he will take a fresh look at Daniel’s situation and either form a different plan or help me better understand the one being set forth by Dr. Moosa. Dr. Lachhwani will be back in town on Wednesday and I am hoping we will be able to talk with him again before we leave. We continue to need and value your prayers for our family.