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.

Summertime!

It's amazing it's already August!  Byron had a great summer.

Byron with Sister-In-Law Regina at the Lake

Byron attended overnight camp at Frost Valley in mid July and he just finished their two week day camp.  He was not crazy about the overnight camp (He missed his Mom)  😌😀 but he really liked the day camp.  8 straight hours of no electronics of any kind!!

Drumming in Overnight Camp

Japanese Robes in Friendship Lodge

Byron loved to ride to day camp in different ways.  He especially liked to ride to the bus stop on the back of his dad's scooter:

The bus picked him up at Benjamin Coser elementary school and took him on the 30 minute journey to the camp.

Next post - Health Update

Surgery Postponed!

We have very good news -  at least for now.   Byron had two more critical tests to complete on Monday and Tuesday even though the surgery was already scheduled for Feb 8.  

Surprisingly, the new EEG Byron had overnight on Monday night was excellent. The sub-clinical spiking that predicated the need for the surgery is nearly gone.  It went from him spiking every ten seconds during the day down to 1% and down from 85% to 11% at night.    So the small dose of Valium he is on, 5mg before bed, is really working.  

The second test was to determine if he has a field cut i.e. because of his stroke on the right side, the left side of each eye is vey likely not seeing.  It turns out, rather miraculously, he does not have any field cut.  The surgery he was about to have would absolutely give him this field cut.  So the surgeons are now hesitant to do this type of radical hemispherectomy surgery.

The recommendation is now to wait and see, retest in June and go from there.  We are very happy with this outcome.  He will still need an aid in school because of the actual seizures which have not abated, but the dangerous stuff, the subclinical spiking, seems to be responding well to the new medication.  

Prayers and blessings really really do work.  Never doubt it.

A Surgery Date and A Song

We received the news that Byron's Functional Hemispherectomy surgery will be on Wednesday, February 8th at 8am at Morgan Stanley Children's Hospital in New York.  It will go for most of the day.  DEEEP breath...

And then this

Byron told me that he had a song stuck in his head today.  He wanted to see the lyrics and for me to help him understand what they meant.  I looked it up and was amazed to see that it summarized this unimaginable thing.  For this little boy (and his family)

"Something Wild"

by Lindsey Stirling

                                                        

You had your maps drawn
You had other plans
To hang your hopes on
Every road they led you down felt so wrong
So you found another way

You've got a big heart
The way you see the world
It got you this far
You might have some bruises
And a few of scars
But you know you're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Sometimes the past can
Make the ground beneath you feel like a quicksand
You don't have to worry
You reach for my hand
And I know you're gonna be okay
You're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Calls you home
Calls you home
Calls you home
Calls you home

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home...

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

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

School?!

I debated whether to send Byron to school today. We didn't get home until 7:30 last night and he had anesthesia yesterday, which can take a while to bounce back from.

I ultimately decided that the last two days before winter break were important to catch up as he had  missed school all last week. So off he went like a trooper. By 11:00 am I got a call from the school nurse, letting me know that he was falling asleep in class. So back home we are and I guess winter break starts early!

He is sound asleep and has been for the last hour.

Hair!

Waiting for the MRI. Electrodes gone!

Going Home Wednesday

Byron is scheduled to have his MRI on Wednesday at 11:00 am.  He will have to be sedated.  So with any luck at all we should be home by Wednesday evening.

My shift has started again and Bob has gone back home.  Onwards!

More Therapy Dogs

Bob, who is on hospital duty today, writes "Today the therapy dogs came by.  In all there were 4 dogs that came to visit.  They were very nice and liked petting.  Here are some pictures I took today.  See below.  Also, Byron was reconnected to all new electrodes today as the they only stick for about a week. "

Coming Home Soon!

I just spoke to Bob and we are in the home stretch.  Byron will have a sedated MRI either today or tomorrow and they will discharge him Tuesday morning.  I will be so happy to have him home!!

Thank you to his Class

Bob writes -  Byron was very happy to receive the Get Well Soon Slide Show from his class today.  Byron wanted to record a thank you for his teacher to show to the kids.    Take a look!

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 Four - Eight Day Video EEG

I have retitled this series of posts "Eight Day Video EEG" because it looks like we will be here through Monday.  His doctor really wants to see a seizure.

Last night Byron was up until midnight and will be again tonight.  This is to stress his system.  And they have cut his Seizure medicine dose in half.  It's a bit frightening to have tried so hard to stop seizures for the last two years, only now to be trying to create one.  I am hoping we can get one or two soon so we can go home!

But today I found out they have free laundry here so it makes it easier to stay longer.

And another party!!! Today was the annual Christmas Gala.  They had real NYC Rockettes,  Stilt walkers and Build-a Bear, free toys, food and more!  I went down and got Byron a few things and then they also came up with more gifts.  Amazing experience.

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.

A Good Climb!

With all the brouhaha around the seizure developments, it's easy to lose sight of little challenges successfully overcome.  Yesterday, on an unseasonably warm November day, Byron tried again to climb this rock wall in our backyard that has been vexing him since he was three years old.  Over the years I would let him give up before he got to the top  - but not today.  Today we worked on it until he got it.  Go Byron!

No Seizures but Lots of Spiking

The results of Byron's recent overnight EEG came back and it showed that he had spiking almost continuously while sleeping.  According to his neurologist these nighttime spikes need to be controlled otherwise they can affect his brain long term and his ability to learn.  So  - in addition to Tripletal she put him on Keppra.  Keppra is well know to have behavioral side effects - rages, irritability, tantrums and on and on.  And we had it ALL!

Byron was not himself on Keppra.  Homework was a nightmare.  I would read one sentence to him and he would have no idea what I read.  And that boy had attitude!  It was basically a nightmare.

So now we are weening off Keppra and I am seeking a second opinion from the Level four Epilepsy center at Columbia.  We are going to see Dr. Akman who is the chair of the Epilepsy department on December 20th.  Please wish us luck.  We need to find something to control the spiking without causing a melt down in behavior.

In the middle of it all we had a huge project for Byron due at school on the Iroquois Indians.  In my opinion this project was too huge for a special ed student in 4th grade but there you have it - what to do?  In the midst of all this Keppra-tude we got it done.  Here is Byron reading his very first essay with a custom made Longhouse  - made by Byron and his dad.  Pretty Awesome!

Another At Home EEG

In June of 2015 Byron had his first seizure.  Since then he has only had one additional major seizure and two small ones.  He had a small seizure last week.

In the middle of the night, I heard Byron's voice calling my name in one of my dreams.  It was about 4:30 am.   I was quite certain that it had been just in a dream so I didn't check on him.  When I woke up later in the morning I said to Bob, "I wonder if Byron had a seizure, I heard him calling me."

About five minutes later, Byron ran out of his room and said "Mom I had a seizure last night!"  Apparently he was conscious but couldn't get up or speak.  I asked if he was calling out to me and he said "I was, but in my head."  I had heard him but only in my subconscious mind!   The only after effect of this seizure for Byron was a strong headache.

When Byron's neurologist learned of this recent episode she requested that he be checked again via EEG. Middletown, a town near us, has a great service that allows the patient to take the EEG and the video camera home with them.  It's quite portable.

Byron will sleep with all this on and then we will go back tomorrow morning to have it removed.  Modern technology is amazing!  The bond between mother and child is amazing!!

Cast Off!

Today we went to Dr. Hyman's office at Columbia to have the cast removed.  Byron was very excited.

This is a video of the cast removal - I guess it was pretty ticklish.

This is Byron's foot after the cast was removed with the surgical scars.  A bit more gory then I imagined.  Byron didn't mind though.  He thought it was cool.

This is a video of Byron walking immediately after the cast removal.  He looks pretty good!

 

Byron now has to wear a removable boot for two weeks until his foot brace, known as an AFO, is ready.  The boot looks like this:

So now a boy's summer can properly begin!  Swimming lessons on Saturdays and lots more pool time.

Also, Byron will start physical therapy three times per week at the Center for Discovery to regain strength and to ensure that his newly released heel stays down and his toe stays forward.  The journey continues!

Walking

Remarkably, Byron has had almost no pain.  We left the hospital with codeine and valium but did not use either which is great.  Just a couple of doses if Ibuprofen when needed but that was it.

Today was the day I got him up and walking.  He was VERY resistant.  The fear of pain was actually the hardest part.  But he is getting now he is doing a great job.

Everything Went Smoothly!

Thank you everyone for all your kind words and blessings!  The surgery went amazingly well, without a hitch.  The doctor was very happy.

Byron threw up twice on the way home (in the cab) but we were well prepared with buckets and cloths.

Byron is eating now and said "all this is so relaxing!"

We go back in one month to get the cast off.  At that time he will be measured for a brace and a new cast will be put on for two weeks until the brace comes in and is fitted.  I hope that one will allow swimming!

Byron is well and home

All went well. The surgeon said the surgery went beautifully. Byron is very tired but ok.  More in a while.  

Byron is out but still asleep