The Seizures Return

 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…

 

Homework Heaven!

For the past two years, homework was the time of the day I truly dreaded.  I knew how smart Byron was but it wasn't appearing in his school work and even less in our homework sessions.  He could not follow a problem that had more than two steps and word problems were impossible.

For example, trying to explain the steps of long division, with it's multiplication, subtraction and precise number placement was almost impossible.  Just when I'd think he got it, he would completely forget the logic by the next problem.  And he could not keep focused on the task for more than a few seconds. The whole exercise, repeated daily with different sorts of math and reading, were incredibly stressful and very sad for me.  And likely worse for Byron.  But Byron was always adamant about completing his homework so we slogged through it.  Often at the end of a session, I was exhausted.

You might ask why I cared - long division who cares!  These kids will just use computers or ask their Google Home!   But his lack of ability to follow sequential steps was a clear indication of how the seizures where effecting his brain.  I thought that if I kept at it, if he kept at it, some how it would ultimately be good for his brain.

Fast forward to today.  Today was Byron's first day back to school after the surgery.  When I picked him up he was smiling, happy and at ease.  This was a HUGE change!  Before the surgery, when I picked him up he was surly and difficult.  Today he was smily and friendly.

And then we had our homework session.  It was two pages of long division.  It has been at least two months since we worked on long division and I readied myself to have to teach it again.  But Lo!  Byron remembered the rules.  And he approached his homework with ease and focus.  He made the small mistakes that any child would with such a complex task, and his handwriting is still miserable, but it was like I was working with a different child.  We got through all the problems without frustration and he remembered the logic and the steps.  And, he could do things in his head that he could not before.  For example when we were working on how many times 52 goes into 367, I taught him how to estimate.  I asked him, "How many 50s there are in 100?" He said 2.
"Ok then how many 50s are there in 300."  He said 6 - right away!  So then I asked "How many 50s are there in 350?"  He said with great enthusiasm. "6 and a half! "  I laughed and understood how his mind came to that logic but we NEVER could have gotten that far before.  It was brilliant and exciting and I was exhilarated.

I am in awe of how this surgery which took half his brain, has made him whole again.  Byron seems to now have access to his heart and mind in ways that were not possible during the last two years.
And we all couldn't be more pleased! 💖

At 6 Weeks Post Surgery

It's amazing that it has only been six weeks since Byron's surgery.  He is doing so well it is quite remarkable!  We have not seen any evidence of seizures which is amazing in and of itself, but Byron is SO much more present, alert and happy.  I imagine that, for him, there was a constant static or interference going on in his brain due to the malformation and spiking occurring almost constantly in his right right hemisphere.    Now, with a quiet brain, he can connect more with his heart, his good feeling and hopefully his intellect.  We have had a hard time getting the tutor here, she has missed two weeks already, but she is scheduled again to come on Monday.  I hope to hear from her that his academics are improved as well.  Byron has told us in the last two years that he "hates" school. I believe this is because, once the seizures started, it was simply exhausting to focus.

Here is a little video interview done today:

Back in the Hospital

In March of 2017, Byron's ESES, an extremely rare form of Epilepsy that occurs during sleep, went into remission.  He went from spiking while sleeping 85% of the time down to 11%, and to almost none during the day.  In July, during his next routine EEG, his doctor informed us that the spiking was now up to 95% which is very serious.  Turns out that small dose of valium (5 mg), that seemed to be the answer, has stopped working.

So here we are again, this time on Eclipse day, back at Morgan Stanley Children's in New York.   Because we had really good eclipse glasses, we had doctors, nurses and patients coming to our room to view the eclipse.

Byron is a trooper.  We are sharing a room this time, and the young fellow next to us is crying SO LOUD and screaming while he is getting the electrodes put on.  Byron is so used to it that he just relaxes and goes with it.   Byron's doctor is on the floor for the whole week so we should get some good results in the morning.  We will be here until Thursday and hopefully we will have enough good information to make decisions about next steps.  I will outline what those next steps might be tomorrow.

Byron's 1st grade School Photo - Age 6

On Monday, November 18, 2013 Byron will have a Selective Dorsal Rhizotomy (SDR). Of the many thousands of these procedures done since the 1950s, less than one percent are preformed on children with Hemiplegia. In the last five years, top neurosurgeons who perform this surgery have determined that it has enough significant impact on children with only one side weakness, to make the risks worth the positive outcome.

 The following is from the SDR website associated with the St. Louis children’s hospital:

 “Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity. ”

While in New York, we’ll be staying at a lovely apartment I found through www.airbnb.com. It’s only 6 blocks from the hospital so it will be easy to go there and rest.

Dr. Richard Anderson from New York Presbyterian will be performing the surgery. Byron will be in surgery for 4-5 hours on Monday, and then in ICU most of the rest of that day.

 On Wednesday, November 20 he will move by Ambulette to Blythesdale Childrens in Valhalla, NY. This is a gorgeous private acute rehabilitation facility just for kids. All the children spend most of their day in therapy and the rest of the time in school that happens right on campus. Children attend classes on stretchers, in wheel chairs, however they are most comfortable. They try to make the children as comfortable as possible by encouraging street clothes and normal activities. Byron will be there for 3 – 4 weeks. He will be relearning how to use his left leg once the spasticity is gone. They have a pool and many other useful therapy tools. Bob will be there with him staying in the facility for the duration. I will try to update every day with pictures and videos.

 Lots of Love!

Byron's First Day of CIMT

CIMT = Constraint Induced Movement Therapy.

Byron has his first day at the Kennedy Krieger Institute in Baltimore. MD today in their prestigious CIMT program. The hours for the first day are 9am - 2pm. Today will be an evaluation day.

Around 11:00 we met the medical director and founder of the program, Dr. Pidcock. We found out a few weeks ago that he is my sister-in-law's brother! He was wonderul and after meeting Byron, said he was a great candidate for the program. I'll try to get a picture of him tomorrow. Right now Byron is off with three different therapists.

Husband Bob and I are waiting to pick him up. They have given us a little room with internet access so we are having a good time. I just played internet scrabble with my friend in France and Bob is working. Right now it's 12:30 pm and they are casting Byron's right arm so that tomorrow they can put on a permanent, waterproof cast. This will prevent him from using this arm so that he will develop skills in his left arm and hand. Byron has left hemiplegia caused by a stroke to the right cerbral artery before birth. He has good use of his left leg but limited use of his left arm and hand.

We will be back here every weekday from 12:00 noon until 3:00 pm for four weeks or so. Dad and I are not allowed in during therapy so I will probably spend time at the YMCA down the road and Bob will work. Can't wait to see the little guy with his new cast!