Insurance Approved!

After a few hiccups with Byron's Insurance - Fidelis Managed Care Medicaid - we are approved!  This means the surgery, the hospital, the surgeons and rehab are all going to be paid at 100%.   We did learn from the surgeon's office that if the out of network doctor (who is one of the surgeons) was not approved, the doctor would perform the surgery for free.  :)

We leave on Thursday afternoon and have rented an Airbnb on 140th street and Amsterdam until next Wednesday.  After that we have some flexibility to rent for longer if need be.

Onwards!

We REALLY have a date!

Apparently all went well when Byron was presented to the surgical team yesterday.  Byron has a a surgical date of November 3 at 7:30 am.

Here he is - his usual wacky and wild self!

We Have a Date?

The surgeons office called with a tentative surgery date - Friday November 3, 2017.  But nothing is real until Byron's case is presented tomorrow at 9:30 am.  We will all stay tuned!

More info on today's meeting

During the meeting today, the surgeon gave us more details on the surgery, recovery, time in the hospital, etc.

Byron can expect to be in surgery for 6-8 hours.  The surgery is done with a microscope.  Byron will have a four inch hole that will be closed up with very tiny screws that the doctor showed to us.  With these screws, Byron will still be able to go through an MRI, C scan, metal detectors etc.  The bone will heal completely in three months.

Byron will be in ICU for  1-3 days and then in the hospital for another 3-10.  Because we are looking to go to Blythedale in Westchester for rehab, he may be transferred there early as they can do most of the wound care etc.

The most common immediate side effect is a kind of placid demeanor with not much personality.  This is due to the brain trying to reorient itself.  And the doctor said that Byron could just wake up completely the same as he went in.  This would be due to the fact that there is currently not much going on in the right side.  The MEG test results showed there was no activity there at all when Byron read or moved his eyes or spoke, other than seizure activity, so that is a very good sign.  And all the seizure activity is still originating from the right so that is very good.

The surgeon promised they would call us today with a date but that didn't happen.  I will call them tomorrow to see what can be done about getting a date.  The surgeon said that we can start with a date even before he is presented because even if they choose the VNS instead of the surgery, it would be the same team.  What we didn't make completely clear is that if the team is only willing to do the VNS, we will go to NYU for another opinion.  As the team is not the ones seeing the regression as we do, we can't possibly wait the 8-10 months that the VNS will take to work.  And as the surgeon said, we may end up here again in a year with a VNS failure.   The thing that makes me nervous is he strongly recommended the surgery last year when Byron was presented but the neurologists convinced everyone that we needed to try more drugs first.  So they do have some sway.  Ah well - another two more days of waiting!

Below are some pictures he showed us of Byron's MRI. The white space that can be seen in the right hemisphere is fluid.  According to the MRI , the left hemisphere is completely normal and seems to be doing all the good work.

No date...yet

We arrived at the surgeons and he immediately told us Byron’s case had not been presented yet and would be on Thursday. He told us they were considering two options, functional hemispherectomy and the implantation of a Vagus Nerve Stimulator. I FREAKED out (a bit).  The VNS has a low success rate and is rarely used in kids with as much brain damage as Byron. Midway through my speech Bob had to interrupt me and say rather forcefully, “Denise, he is agreeing with you!”  Deep breath. Deep deep breath.  

Bob and Dr. Feldstein really connected. They both make pens with a lathe and they compared their handiwork with photos and samples.

By the end of the visit we agreed that they would call us soon with a surgery date. The surgery would likely be early November and would likely be the Functional Hemispherectomy. So again, we wait.   More soon. On the bus home now.

Appointments

Byron's appointment with the surgeon Dr. Feldstein will be on Tuesday, the day after Byron's case is presented to the surgical board.  We should learn a lot in that appointment on Tuesday.

I confess I am a bit nervous.  What I am hoping for is that Byron is approved for the Functional Hemispherectomy on Monday and the appointment on Tuesday is to discuss logistics, outcomes, and to make a plan.  What I do not want to happen is that they either postpone again for some other intervention that is likely not to work, or suggest a much lesser surgery.  The reason why I do not want the latter is that from everything I have read, including the scholarly articles I can get my hands on, is that these "Lobectomies" or partial surgeries have a very low cure rate and the Hemispheretcomy ends up needing to be done down the road anyway.  They may err on the side of caution with this due to their fear that Byron will lose some critical functionality, but that caution may be specific to this hospital. The Cleveland Clinic, one of the top places to have this surgery in the world, weighed in on Byron's case last year.  The Dr. there said they would not hesitate to go immediately to the Functional Hemispherectomy and that this was the best course of action. We can't choose this hospital however, because Byron's insurance is limited to New York based hospitals.

So we are very much hoping that from here on in we have smooth sailing towards the cure that will give Byron the best possible life - seizure free!

Things are moving!!

Just heard from Dr. Akman's nurse that Byron's case is being presented to the surgical committee next Monday ( a required step before the surgery can be approved) and we are going to meet with the surgeon, Dr. Feldstein this week.  When Byron's case was presented in January 2017 they determined that we needed to try more pharmaceutical interventions first, before surgery was considered.  I asked if that was likely to happen this time and the nurse said, "Dr. Akman is very clear that surgery is the next step for Byron."

It is very strange to be excited about a surgery of this magnitude, but with everything that is happening right now (Byron forgot the word for "Banana" the other day) it is the best next step.

Ultimately the board did approve the surgery in March 2017, but Byron went into temporary remission so we postponed the surgery.  In March, Byron's condition was not nearly as dire.  So I might have always wondered "Did I do the right thing?"  But now we are absolutely sure.  No regrets - only looking forward.

Random Thoughts and Hurry Up!

It seems very weird to be wanting a surgery to come soon but in this case, we do!  Byron's teacher let us know that he can no longer be in school without an aid.  He is being disrespectful, disruptive and in her words "He is not learning anything, He is not retaining anything."  This is classic ESES regression.

For so long we didn't see regression with Byron's ESES, but now that he is also having clinical seizures at night as well, his poor overworked brain can no longer handle it.  

We have introduced CBD oil into his daily medication regime, which seems to be helping a bit with attention.  We are using Charlotte's Web, Advanced Formula.  We give him 1ml in the AM and 1.5 ml in the PM.  Each .6 ml has 50 mg Hemp oil.  Each dose is about 90 minutes from his other medications. 

This CBD oil costs about $250 per bottle, not covered by insurance, but at this point it's worth it.  Speaking of medication costs, if we didn't have insurance, the new medication he is on -  Onfi - is $1,375 per month.  

Byron is on Medicaid due to the extent of his disability and it is because we live in New York State that it pays for most everything.  

My iPad created this little musical slide show for me this morning.  It reminds me of what a sweet boy he is!

New Seizures and Waiting

Last Monday Byron had the MEG test which is a combination of an EEG and and MRI.  He did pretty well but one of the objectives was that he sleep in the machine for an hour.  In order to make this happen I was required to keep him up until 2:00 am the night before.  This was the night that Hurricane Irma hit the coast of Florida so there was lots to keep us up but Byron started to fade out completely by 12:00 am.  So off we went to McDonalds in his footy pajamas.  The young man behind the counter asked us if we were going on a road trip and we just smiled and said no.  We brought the food home and watched "Captain Underpants" until 1:30 which was all Byron could take.  

The next morning Bob woke Byron up at 6 and took him to the test. But he didn't sleep!  Sheesh!   Even so, we do think they got most of what they needed.  We won't know the results until the end of September. 

On Thursday of this week we go to New York for an updated Nuero Psych evaluation were they will see if there has been any intellectual regression since the seizures have gotten so much worse.  

I asked the doctor what the next steps are and she said they are waiting for the MEG results and then he will be represented to the surgical team.  In the mean time, Byron woke up completely disoriented yesterday.  He obviously had a bad night with seizures.  He could not even dress himself.  I chose to send him to school anyway because he seems to be getting better, but he was sent home again at noon.  He is much better today.   I put a call in to the doctor but haven't heard anything yet as of this morning.  

Next Steps....

Byron is very happy to be home.  Unfortunately he is not looking forward to school starting.  The days are quite long, he leaves at 8:30 and doesn't get home until 4:30.  If /when the surgery happens he will not go back to school for some time, and when he does it will likely only be for a few hours a day.  I'm sure he will be happy about that, yet it will be a challenging year learning wise.

The school is great and they are making provisions to make him as comfortable as possible.  They are covering all the fluorescent lights in his classroom with scarves and they are letting him sit on a sensory chair which is basically a ball chair.  We are all hoping that the the homework is not too much this year.  After such a long day, he can have nearly an hour of homework each day.  Byron is very disciplined about getting his homework done right away, but he often does not have the brainpower to focus enough to complete it accurately.  So it's a struggle.

As far as next steps with the surgery, it is a waiting game.  We have an appointment on the 21st of September for an all day neuro-psych evaluation.   This will let us know if he has had any intellectual regression since the last test in December of 2016.  The approvals for the MEG test are moving along.  When these tests are done we travel to Tarrytown to meet with his doctor.   She has to petition a large board of surgeons and others before the surgery can/will be scheduled.  So we wait.  I'm guessing it will be October/November.  It would be nice if it would be before winter so traveling will be easier.

The surgery would be at Columbia Presbyterian in New York and then rehab at Blythedale Childrens in Westchester.  Blythedale is a great place and he has been there before.  They have a school within the facility and lots of fun activities for the kids.  Even if kids are on a stretcher or in a wheelchair, everyone participates.  Some children are there for 6 months or longer, but Byron is likely only to be there for about a month.

Byron is spending his time before school playing his beloved video games, visiting with family and friends and making videos for his you tube channel - Byron Gamer Plus.  I just posted this video last night for him and given everything he is going through it is such an inspiration.  He chose this song and it seems very appropriate.

Going home!

We are leaving as soon as they can disconnect him from the electrodes. Next step is the test in New Jersey and a follow up with the doctor in September.  Dr. Ackman is also going to meet with the surgical team to get their next steps. The Onfi appears to be a good stop gap until next steps can be determined.   It will be nice to be home!

Working?

The Onfi seems to be working a little bit.  He's down from 33 episodes to about 20 overnight.  But it can take a couple of days for the full dosage to kick in.  We may be discharged today after all.  We'll know in a couple of hours.

The VEEG tech showed me the seizures on the video recording yesterday afternoon.  They don't look like seizures at all to me but once you see them over and over in a repetitive fashion it makes sense.  First he starts chewing, then he grinds his teeth, then he stretches both legs out very straight and then he wipes he nose with his right hand.  That's it.  I am amazed how many times, while he is sleeping, I have seen him do this and never thought anything of it.  But when he does the exact same thing 30 times you can begin to see it as a pattern.    These are what they call "clinical" seizures meaning that there are outward movements.  The "subclinical" spiking is still there unfortunately and that hasn't decreased.  It is still at 80-85% of the night.

So we are marching towards the surgery with these new meds as a precaution until we get there.

Oculus

There is a saying I remember from the Sound of Music - When God closes a door, he always opens a window.  An Oculus is a round window and this afternoon we discovered one  - Oculus Rift!

We got a new roommate this afternoon and there was more crying and SCREAMING as the electrodes were put on so I made the wild and crazy decision to disconnect Byron from the monitors and go for a walk.  As much for my sanity as his.

We rode the elevator for a while and then went to the lobby.  There we stumbled upon an entire video game arcade set up for the kids.  Byron has been wanting to try virtual realty and they had two VR headsets on the Oculus Rift system.  Byron had SO much fun.  His mood is better and so is mine.

Managing the Unimaginable

Byron's doctor just left.  According to the EEG Byron had 33 seizures last night.  (Long pause)

So now we try and add Onfi to his seizure medicines today and we could see a good result tonight.   Byron is already begging to leave so this will be hard for him.  It's possible we may be here a day or two longer.

And we are now looking at the Functional Hemispherectomy surgery again.  I'm not sure if the Onfi works if they go forward with that full on or not, I guess we have to wait and see.

The doctor has also ordered a test that we have to have at Overlook Hospital in New Jersey which will tell us where his visual field cut is.  This is important because the surgery will give him a field cut if he does not already have one.  This means that the left side of his vision in both eyes will be gone after the surgery.  

Poor Poor B.  Sad for him today.

Spiking at 85%

We met with the doctor yesterday morning and the spiking is back to 85%.  Byron had some activity that looked like outward seizures in the middle of the night but they are not sure.  We should see the doctor this morning in a couple of hours and I am going to ask her some pointed questions to see if we can get some clear options on how to move forward.  This is such an inexact science it seems!

Yesterday Byron had a light strobe test to see if they could induce a seizure.  He had to stare at flashing light off and on for five minutes.  No seizures from that source were found.

We also had a nice visit from Byron's brother Ryan and his wife Regina.  Byron and Ryan played Minecraft and Regina snuggled with Byron while I took a much needed walk down to the river.  The air was hot but the breeze was lovely!  More later 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.

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