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! 💖

Surgery - The Functional Hemispherectomy

When Byron, Bob and I first met Dr. Akman, the head of Columbia Presbyterian's Epilepsy Center, we were very impressed with her credentials and experience with Epilepsy.  I also knew, going into the meeting, that she would bring up a surgery that I had heard of, but never considered an option or a necessity for Byron -  Hemispherectomy.

This surgery, mostly now done as a Functional Hemispherectomy, is when a surgeon "disconnects" the side of the brain that is causing seizures.  Through the Corpus Callosum, a broad band of nerve fibers joining the two hemispheres, the surgeon "unplugs" the damaged brain hemisphere, giving the patient an 80% cure rate for seizures.  This surgery was brought back into regular use by Doctor Ben Carson in the 1980s (a famous presidential candidate) in his former incarnation as prominent neuro-surgeon at Johns Hopkins. At that time they were doing Anatomical Hemispherectomies, where they actually removed the brain tissue itself, but this is not often done anymore.


Because Byron had a stroke pre birth, his right hemisphere looks like this.  This is his actual MRI when he was an infant.  You can see that there is very little brain matter on the right side.  The seizures are emanating from the scar tissue in that white area.







After we discussed the possibility of this surgery with Dr. Akman, she asked me how I had heard of the surgery. I told her that I had heard from other mothers of children who had Byron's condition and online groups.  She was very upset that I had not heard about it from any doctor or Byron's former neurologist.  She told us that there is still such a stigma about this surgery that many families and even doctors, though it can provide a cure, will not consider it.

I told her that if all goes well with Byron, if he has the surgery, I would be happy to talk to other parents or even doctors about our experience. She looked very moved and she said "You can be my voice!"  So in keeping with that promise, I thought i would make this post a little more detailed than usual.

After Byron's endless video EEG and MRI, the Chief of Pediatric Neurosurgery at Columbia, Dr. Feldstein, told us that Byron is an exceptionally good candidate for this surgery.  The right hemisphere, being the non-dominant hemisphere, has fewer side effects upon disconnection e.g. no loss of speech.  (The speech center is usually on the left side).   And Byron has so little brain matter on that side anyway, he felt that it is very unlikely that Byron is using much of it for normal functioning.  

But there are several next steps.  We heard that after we left the hospital, they presented Byron's case to the Nuerology team, as is the typical protocol.  During that meeting, other Eleptologists felt that we hadn't tried enough pharmaceuticals yet to warrant a surgical intervention.

So, first we have to exhaust another course of pharmaceuticals, and this is not our first choice.  Dr. Akman has prescribed an evening dose of Diazepam (Valium), in addition to his Trileptal, to see if this will calm the night spiking.  She admitted that she does not think this will work but it needs to be tried.  The almost constant night spiking that Byron has, ESES, is nearly impossible to cure without heavy, and potentially toxic doses of medicine.  Fortunately she is not asking us to go to that extreme route.  (ESES can happen, and does for many children, on both sides of the brain, and these children do not have a potential cure as Byron does.)

Then, at the end of January, he will go in for another shorter video EEG, and if the subclinical spiking is still present, we move forward towards surgery.  

Byron also needs a Functional MRI, to check which parts of his brain do what, but that can be done in this time frame as well.

A word about CBD oil.  Many people have reached out to me about Cannabis Oil.  We have researched this extensively, and discussed it with Dr. Akman. She does not recommend it for Byron and from what I have researched, when the seizures emanate from a known infarct, the injury to the brain, the CBD oil does not help much at all.  And when speaking to other mothers who are in the same boat as we are, the CBD oil was not helpful.

Surgery is our best option at this juncture.  If the constant subclinical spiking is gone at the end of January, then YAY!  But if not, we move towards this scary but necessary option.

Of course we asked what the outcome would be.  The surgery takes about 8 hours. Best case scenario, Byron wakes up with minimal side effects, is gone from the hospital after two or three days, and is back in school in a month.  His seizures and subclinical spiking go away, he has a clean EEG, and we ween him off of all medicines for good.

This is the outcome we pray and ask for blessings for. And we know it is possible.  Byron's recovery from his Selective Dorsal Rhizotomy was the quickest they had ever seen in the hospital.  But even if it is not that quick or complete, we can work with that too.

And as always, I will keep this blog updated about Byron and his wonderful world!

This link takes you to a very sweet video of a man in Wyoming who lights a tree for every child in the world who has had a hemispherectomy.  It started when Ben Carson operated on his granddaughter.  Now he has lit hundreds of trees.   It is the Hemi-Lighted Forest of Hope.

http://www.kgwn.tv/content/news/Hemi-Lighted-Forest-of-Hope-406163345.html

Day Five - Endless Video EEG

The focus is now on making sure that we capture a full seizure on the video EEG and to study it when it happens.  The neurology team is reducing Byron's medicine and letting him stay up until midnight every night to force the issue.  Which has made me very very tired.

Bob is here for the weekend shift,  and if need be I will return on Monday.  The way things look now they are fairly sure he will have a seizure before Wednesday.  It seems utterly barbaric to put him through this but I am assured this is what needs to happen to know the best way to treat this very difficult form of Epilepsy.

ESES - Electrical Status Epilepticus in Sleep is the official diagnosis as of right now.  This form of Epilepsy can be very hard to control so they really need lots of data.

And as always Byron is doing great.  He likes staying up late but he is a little loopy.  Byron's school mates sent a get well soon slide show.  It is so sweet.  Because their names and pictures are in it I won't put it here but it was so touching and heartwarming.  Byron loved it!

He had a visit today from the sweetest therapy dog who looks just like our dog Daisy!

And Santa finally came in person for a real visit.  He brought Rudolph, an Elf, gifts of Legos and took a selfie with Byron.

Day Three - Five Day EEG

Stay Longer?
Byron has done very well in his Neuro Psych exam.  YAY!  It's a lot of coloring and building and answering questions, all things that are not his favorites.  But with a little treat bribery (milkshake anyone?) he's putting up with it.  He has another 90 minutes this afternoon and then he will be done with that test.

The other news is that they might be able to work him in for the sedated MRI on Monday.  This is great news and means we won't have to come back for this particular test.  So, we will stay through the weekend.

And, starting tonight they want to force a seizure.  What this means is they will wean him off his medicine and sleep deprive him.  For Byron, sleep deprivation is a party!  He can stay up until midnight or one every night until he has a seizure.  This is important because they want to know exactly what area of the brain the seizures are coming from.  This will help the doctors to decide the next course of action.

Once this is all finalized, Bob will come and take over for me on Friday.

Special Tea
Once a month -  mothers, fathers and families that have had children in the hospital here, and even children who have been here at one time or another, serve a fancy sit down tea.  It is full of delicious home made delicacies and tea/coffee.  Today was the day!  Byron couldn't leave the room so I sat and had Coffee, Tiramisu and Red Velvet Cake. I brought Byron some of the home made chocolate chip cookies.    He was very happy.

More Santa Photos

Santa's elves sent more pictures of Byron and Santa from yesterday's Skype call.

Day Two Part Two - Five Day Video EEG

If it is possible for someone to have fun in the hospital then it is happening.

We had a visit from Byron's uncle Jeff today, a therapy dog came by for a scratch and a treat, Byron's brother Ryan and Regina are coming tonight AND Byron had a Skype call with the real Santa in the North Pole!

The room is quite large and comfortable. I sleep on a pull out couch that is surprisingly ok.  Tomorrow Byron has an all day Neuro Psych Evaluation.  Fingers crossed that he complies with all the tasks.  

Day Two - Five Day Video EEG

Laughter really lights up the brain!

Typical Daytime EEG

The EEG on Byron's Laughter

5 Day Video EEG - Day One

Byron and I find ourselves back at Morgan Stanley Children's Hospital sooner than we expected.  Byron has had two surgeries at this hospital.  I sometimes call it Columbia Presbyterian but it really is Morgan Stanley Children's Hospital.

Byron's last EEG in October was not good news.  He is having subclinical spikes nearly every ten minutes while he is awake and almost continually at night.   While these are not seizures per se, they do not bode well for his development over time.  These spikes can interfere with learning and his overall good health.

The purpose of this visit is to see what this spiking really is i.e. whether indeed he is having small seizures that we are not noticing.  So he will be hooked up to the EEG machine and watched by video for five days.

So far today they have hooked him up, flashed a strobe light in his eyes for five full minutes (to try to induce a seizure in his Occipital Lobe (?)) and taken blood to test his seizure medicine levels.

AND still the guy is cheerful.  AND there ALOT of snacks which makes him very happy.

AND we have a single room with a million dollar view of the skyline and the Hudson river.