Byron is so happy to be home. He had a very restful and long night sleep. He’s had great snuggles with Max. His friend is coming over this afternoon for a relaxing visit with barbecue from the local smoke house.
He also saw an Osteopath this morning who lives here locally. She is truly gifted and I believe she helps him tremendously.
And it’s a gorgeous, sunny, mild day A nice pause between now and all that comes next.
We have a way forward! Just had an excellent meeting with Dr. Feldstein (I LOVE FaceTime) the wonderful neurosurgeon who did Byron's initial surgery. There is so much hope now! He doesn't know yet why or from where the seizures are happening but he is determined to make them stop. And soon! There are several pathways forward:
1) The DTI specific MRI that we had yesterday might show a missed connection. This missed connection can be fixed by a laser ablation procedure. Not even an overnight in the hospital!
2) The DTI doesn't show anything so they proceed to an SEEG. This is tiny implants through holes in the cranium, minimally invasive, and these readings will tell the surgeon exactly where the seizures are coming from. Once they know (usually takes 1 - 4 days in the hospital) on the same hospital stay, they can go in and remove this seizing tissue. Should be minor pain and not a long hospital stay.
The best news is that the surgeon said "I'm not going anywhere this summer so I want to get this done!"
Hallelujah! All the prayers and blessings from all over the world and from so many dear friends and family have supported us while we get the answers that we needed. Grace abounds.
We do not have complete seizure control and a definitive plan to move forward but there is not much more we can do here. So we follow up in two weeks with his neurologist, hope the neurosurgery team has ideas, and we wait. But Byron seems alert and not too overly compromised by the very strong medications so that’s great. We thought he might be pretty out if it. But other than being a bit sleepy he’s alert and steady on his feet.
He’s very very happy to be getting home to his video games, his dog Max and the rest of his summer. So are we. But we leave with a nervous undercurrent. I want those five years seizure free to continue for the rest of his life. I want another permanent solution. May it come and come quickly. A lifetime of seizure meds is not our best option. Onwards!
Today Byron was disconnected from the EEG leads to see an opthomologist in another building. In order to get there he had to travel in underground corridors more scary than any movie he said he's seen! He’s had three seizure episodes this morning already so we really hope they rehook him up to the leads. In a few minutes he goes up for another MRI. In the meantime they have a new room. With a window. Much nicer!
Even with all the new medications the seizures are not under control. But the hospital is very quiet tonight so even though the EEG machine is making crazy lines showing that his brain is having a non stop electrical party, Byron remains asleep and at rest. You can really see a lot on FaceTime. Kudos to whoever invented this!
The brain/ body is strange and wonderful. Hopefully we will have more news tomorrow. We were told today that we may be here a few more days. I agree. I don’t want them to release him until we have a real plan.
The first medication they put him on was Keppra and at least this seemed to stop or slow the clinical manifestation of the seizure, meaning the eyes locked to the left. So that eye movement is not happening now which is good. But the subclinical, the electrical discharges in the brain, have not abated. This is very worrying. The doctor called them "cyclical seizures", originating from the frontal lobe on the disconnected side.
So they are going to add another medication Vimpat. He will be on Kepra 1000mg twice per day and Vimpat 100 mg. The surgical team is going to meet and consult, but not until tomorrow. We will have some idea of what the surgeons say about next steps then.
Bob is tired but he's resigned to the fact that they will spend at least one more night in the hospital. The medicines are affecting Byron now, he's very sleepy and kind of out of it. This is why I REALLY dislike seizure medicines. There is no way around the side effects. More soon...
Sorry in advance, this entry is LONG.
It’s been a banner year for Byron. He graduated 9th grade from CCHS, a collegiate private prep school with top marks as well as college credits in Writing and Spanish. YAY!!!
The next day after school ended, he started to complain of headaches upon waking. They were severe enough that he needed to take Advil and stay in his room until they dissipated. Then he started to complain of something he called “fatigue”. He said he was having fatigue and that it was severe. But when pressed he said the fatigue was short and came and went. This was suspicious but we weren’t sure really what he was talking about. The headaches became so severe that Bob and Byron went to the ER at Morgan Stanley Children’s in NYC on Saturday June 18, to have them checked out. The on-call doctor was worried about hydrocephalus. This is an increased pressure in the side of the brain with the hemispherectomy surgery (right) caused by buildup of fluids. This can actually be fatal if left untreated. After 7 hours in the ER and an MRI with DTI contrast - using this technical terms for my records - they found no evidence of Hydro so they let them go.
Headaches continued. “Fatigue” continued. On Monday June 20, Bob was teaching Byron to drive at the college. I was in the backseat. Bob said, “Make the turn here into the parking lot”. Byron said, “I can’t I’m having fatigue”. I explained that you don’t usually just have sudden fatigue and asked him what else is happening? And that’s when he turned to the back seat and I saw it. Both of his eyes were locked to the left. He was conscious but he was having the classic focal (partial) seizures that he has been having on and off since he was a baby. These are not the seizures that precipitated the hemispherectomy. That was ESES (electrical status epilepticus in sleep), an extremely rare form that exhibits as constant subclinical seizures. ESES was causing him to regress developmentally.
After getting a few more of these episodes on video (they were happening every fifteen minutes), Monday evening I called the Columbia doctors answering service. I spoke to a lovely neurologist who told us that we need to come back to the ER. There was no rush but to arrive to the ER Tuesday morning, June 21.
So off Bob and Byron went again (so glad Bob is retired) and I stayed home to hold down the home and work fronts.
My position is permanently remote so it is perfect! There is so much good fortune and Grace in everything that happens in our lives, in all these situations. Even through the outer circumstances seem difficult, everything aligns to make dealing with them very easy. For example we don’t have to worry about insurance. Everything is fully covered because of Byron’s Medicaid (we never see a bill). This is not so for many children. Our son and daughter-in-law Ryan and Regina, now live very close to the city with a direct train, so the car could be left with them and the trip could be made without driving and parking in NYC. Bob is retired so he can fully take this on. It’s all good!
They finally admitted Byron. It took them nearly eight hours to get a room from the ER but Bob and Byron remained in good spirits. When I called they were watching “Jaws” without sound.
When they finally got Byron hooked up to the EEG at around 5pm they noticed he was having what they called “Cluster Seizures” seizures that happen one right after the other. AT 6 they gave him 1000mg of Keppra via IV, and then at 10:45 pm they gave him Ativan 2mg via IV. Byron slept well. Bob did not. There was a child who was having a hard time overnight so there was constant sound. They made funny clown noises at the front desk to sooth the child (Children’s hospitals are amazing) but Bob was kept awake by the crying and the clown sounds. I should say that they are not on the epilepsy floor - not sure why. The epilepsy floor is pin-drop quiet. I do hope Bob asks about moving.
In the middle of the evening last night I emailed Byron’s surgeon to let him know what was going on. I got a short email this morning that he would try to stop by the room. This morning, I was able to be on speaker phone in with the doctor on call (not a neurologist). Apparently, all the seizures are arising from the disconnected right side. She was not a nuero so she couldn’t give us any more detail. Hesitantly I say, this is good news.
There are three things I see coming and questions we will ask when the Neuros come around about 11.
1) If these are all coming from the right side, was there a missed connection that you couldn’t see on the MRI? Sometimes even if there is tiny bit of tissue left connecting the right to the left, this makes a successful bridge for the seizing side to affect the “good” side.
2) If you determine this is the case, is another surgery on the table?
3) Is an “anatomical” hemispherectomy an option? I have communicated with several Mom’s of kids who had to have the entire disconnected brain removed from the skull cavity as it just couldn’t be trusted in there to stay. This has stopped all seizures. Byron’s was a “functional” hemispherectomy where the brain is left attached to the blood supply. There are more risks to this procedure however, including higher risks of hydrocephalus.
4) If we try medicines, what are the side effects of being on multiple seizure medicines for something that can be remediated surgically. Byron failed three medicines, Keppra, Trileptal and Onfi, before his surgery (failure means they don’t work as expected or cause terrible regression or behavior problems). Frankly we are not that eager to go down the “try and see” with multiple strong medicines. But let’s see.
To be continued…
