We had our 10 month check up after Byron's hemispherectomy. This is the first time we have seen his neurologist since the surgery on November 4, 2017.
She reviewed the MRI and the overnight EEG and confirmed what we suspected - Byron is seizure free! At least for now, and hopefully forever.
We are going to begin to ween off all medications starting today so that by the one year anniversary of the surgery, he will no longer be on any seizure medicine.
Then we will do one more overnight EEG to confirm that even without medication, he is seizure and ESES free.
She also asked several things of us: if Bob and I would speak to other patients and parents going through the same thing, if Byron would speak to a large conference of nurse practitioners in a few months, and if Byron would consider being in one of the commercials for the hospital called "Amazing Things Are Happening Here." We said we would be willing to consider all and to stay in touch.
She also told us that because of Byron, she spoke to the director of the hospital about being more aggressive in letting people know that the hospital does this type of surgery. Last year we told her that when we were first looking for hospitals for this surgery, Columbia never came up on list-serves, parent groups or seizure blogs. She said then, that she wants to change all that, and today she confirmed that the hospital was moving in that direction. That's really great news, because Columbia really is a good place to have a Hemispherectomy. And in partnership with Blythedale for rehab, it makes it very easy to go through the whole process.
Showing posts with label Functional Hemispherectomy. Show all posts
Showing posts with label Functional Hemispherectomy. Show all posts
Thursday, August 16, 2018
Wednesday, August 23, 2017
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.
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.
Monday, August 21, 2017
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.
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.
Monday, January 16, 2017
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)
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
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
Monday, December 26, 2016
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
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
Subscribe to:
Posts (Atom)