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! 💖
Showing posts with label ESES. Show all posts
Showing posts with label ESES. Show all posts
Wednesday, January 3, 2018
Tuesday, October 10, 2017
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.
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.
Sunday, September 24, 2017
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!
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, 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
Friday, December 16, 2016
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!
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.
Wednesday, December 14, 2016
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.
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.
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