A Year with Two Brains

I can't believe we're already here, it doesn't seem possible. It's been a year from the day we made the decision to cut our child's brain in half, to give him two brains instead of one in the hopes that they would function better separate than together. A year since we were told we were making a terrible mistake, and that it would never work; it's just not done in Doose kids because it doesn't work. A year since I held my son's hand while he was wheeled in to the large OR and put under while watching a SpongeBob video, completely unaware about what was going to happen. A year since I kissed him one last time on his un scarred head then went out into the hospital lobby and cried harder than I ever had in my life. A year since we sat in the "special" waiting room feeling more alone than ever just waiting. But biggest of all it's been a year, an entire amazing year, since Ethan has had a seizure, that's 11,000+ less than he had the year before! And what a year it's been. I want to start from the beginning and tell Ethan's story, ending with where we are now. It is quite literally an unbelievable story!

Ethan's story starts not unlike most others. He was born just slightly late, fairly easy labor. His head was so big he had bruising, lol! His only complication at birth was jaundice. It was bad enough that he had to come home on bili-lights to flush it out of his system. That's a pretty common issue though, we didn't think much of anything about it. He was a happy and excessively easy baby. He was almost always calm and an amazing sleeper!

After a few months a couple more "common small" problems started up. He had severe reflux. He threw up everything he at for a year. No amount of medications or massive amounts of baby cereal could stop it. He also drooled excessively. He drooled until past the age of two. Besides that he was a happy and healthy little guy. He was perhaps slightly delayed. He would always do something at the very end of the normal range, or maybe slightly after. But he always did eventually do things. He was clumsy, often falling. He had a speech delay as well. Once again, he was only maybe a few months behind so we were always told to wait and see, it's probably nothing. Nothing was ever enough to raise any red flags. He just did things in his own time and in his own goofy "Ethan" way. He was always a very sweet and polite child. Some of his first words were please and thank you. He never went through the terrible twos we had heard so much about. He was a constant joy.

Ethan was such an easy child, and so wonderful to be around that we decided to expand our family. Shortly before he turned three, Taylor was born. He was a good big brother, probably slightly frustrated she couldn't stand up right then and play with him! Ethan started preschool when he was 3.5. He loved being able to go to school and play with his peers. He started learning so much more, and we thought for sure all he needed was to be in school and that he would soon be caught up! I even took the kids out to Arizona to visit my sister and brother-in-law shortly after starting school. He was so excited because he was very interested in fighter jets and my sister took him to see real ones! Everything was going perfect in our world!

 

It was just shortly after we returned from our trip that he went to another day of preschool, just like normal. It was a typical day, and I picked him up after and brought him home. I put Taylor down for a nap, and he was off playing. He kept standing up on a chair to reach up into a high up cabinet where all the snacks were kept. He kept bringing me things and each time I would say no and take it back. He got up there for a third time and I watched him with a smile on my face. He's nothing if not determined. I watched him slump down in the chair, surely he was playing dead, a fun game for a 3 year old boy. I went over to see what he was up to. What I saw will never leave me. His eyes were rolled up into his head, he was foaming from the mouth, and around the outside was turning blue. I called 911, I told them I thought he was choking, I didn't know what could have happened. Just before the paramedics got there he took a big breath and started breathing normal and fell into a deep sleep, the first of so many to come. He was asleep and draped over me when they came in to check him. They informed me he probably had a seizure. A seizure I thought? That didn't look like a seizure, not like anything I had ever seen on TV. He was taken to the hospital and a full workup was done. He was completely fine. We were told that I had missed a fever that he had and it caused a seizure. This was common and it would not happen again. So we went home, still scared but sure the doctors wouldn't tell us this if it wasn't true. But our world was again rocked when two weeks later things repeated themselves. I was positive this time, not fever, no anything!

We were finally sent to see a pediatric neurologist at a big hospital in Denver. He had an MRI and and EEG done. Both were clean, the EEG had "maybe a small spike, but it's probably nothing". We were told epilepsy is common, and most children outgrow it. We were quite literally told, "just no tree climbing". Just put him on this drug. Most likely it will stop anymore seizures and we can wean him off it in two years. All things considered this wasn't so bad. The drug had some pretty major behavior side effects, but it was better than watching seizures. For a week it seemed our life was back to normal. Then I went to pick him up from school and got a call as I was walking in the door, Ethan had another seizure.  He was asleep on the floor in the classroom when I ran in. What now, a higher dose maybe? Then over the next several days our world was rocked while the seizures came over and over and over. So we tried another drug and a couple weeks went by with nothing. We thought we had found a solution and the nightmare was over! It wasn't long after that we started to see these tiny little eye movements. They would mostly happen when he was crying. His eyes would almost pop up just the tiniest bit, and his head would drop back just a little. At the time not knowing what we know now, we actually thought the drugs were stopping bigger seizures from happening, and instead we were just seeing these little jerks. Little did we know these were a whole different type of seizure. The jerks got stronger and more frequent until they were happening hundreds of times a day. The larger tonic-clonic seizures returned as well. We found ourselves in and out of the hospital almost constantly trying to find something to help, and a reason it was happening. Drug after drug was tried, nothing helped, most made him worse. We watched  him lose skills, we watched him become almost non verbal, we watched him not be able to walk across the room without falling, we watched out child slip away from us and there was nothing we could do.

Things got so bad that his doctor eventually came out with it; this was more than he could handle. He didn't know what it was, and he didn't know how to treat it. His seizures were out of control. The drug count was up to about 8 at the time. He was seizing hundreds of times a day. We were literally in the hospital for status seizures every other week. So we made our way over to Denver Children's Hospital. We literally went up at 8 one night when we finally got word his case had been transferred. During that admission they did a 48 hour EEG. It was the head epileptologist at the hospital that finally diagnosed him after reviewing the results. He was put on a spectrum between Lennox Gastaut Syndrome and Doose Syndrome. At his worst he's closer to LGS, and on better days closer to Doose.

From there we added more drugs, and removed others. We still didn't get results from any of the meds and the decision was made to put him on a ketogenic diet. This diet is excessively strict. All food is weighed out to the gram, and ever last spec has to be consumed during the meal. Just one little slip up can cause a negative effect. It's very high in fat. We quite literally fed him butter and heavy whipping cream every day four times a day. The diet did help a little at first, but eventually it was no longer helping and was actually making him sick. He was weaned off the diet, and just like always a few more drugs were tried. Once again, none were effective. In all he was on 13 different medications. And seizure meds are no joke, they all come with major side effects, and once you put three or four together for one small child it makes them a mess. He developed central sleep apnea and began to not breath while he was sleeping. The seizures were too much on his brain. He had to start using oxygen any time he was sleeping to keep him breathing.

Something had to be done. He was slipping further away from us every day. He regressed to the level of a two year old. He had a constant tremor. We had reached the end of the line and we knew it. There was literally nothing left, no more drugs, no more crazy diet. There was a brain surgery though, a corpus callosotomy. We had been told there weren't any surgeries that could help him, but from my own research it seemed promising. His neurologist presented his case to a board of other neurologist, epileptologists, and neurosurgeons. They initially denied him. I knew this was the only chance he had though. They had to reconsider. I told his neurologist of all the research I had done and how many kids it had helped. She agreed to do more research herself and to present his case again. He was approved for the surgery!

On September 19th 2012 Ethan went in for his complete corpus callosotomy. They completely severe the corpus collosum, the largest white matter structure in the brain, and split the brain in hopes that the seizures can't jump to the other side of the brain from where they originate and then generalize. The surgery took over 6 hours. When he came out of surgery he was in the ICU for a day. He really couldn't talk at first, mostly just a word at a time. He was also very nauseous. But every day he got stronger and was talking more and more! A week later we were home and getting back into normal life. But what wasn't back were his seizures! Every day we held our breath, and every day was another seizure free day!

The days turned to weeks, and weeks to months. Still we waited, and still no seizures! But what we did see was an amazing growth! He was suddenly talking so much more, and learning at an incredible rate. His brain was finally clear. He was able to retain information for the first time in years. He ran around and played just like a typical child. After several months he went in for a new EEG to see what was going on. Though there was frequent spiking, he did not have a single seizure! Within the next couple weeks we moved him into his own bedroom and out of ours for the first time in 2.5 years!

In early February our youngest daughter Lily was born. Ethan is completely in love with her and loves having a new little buddy. She's always wanting to hold and play with her, and he actually can. We were able to focus on having a newborn, and not worrying about Ethan constantly hitting the floor. And she just adores him. She smiles and giggles whenever he's around. He makes silly faces and sounds and she adores it!

He has hobbies and interests. He's finally excited about life again. He wants to go outside in play. He's constantly engaged in make believe games with his toys and his sister. He's excited about going to school in the morning, and he's making AMAZING progress.

Not everything is perfect. We are struggling quite significantly with his weight and eating. This is not a side effect of surgery, but just a side effect of everything he has gone through. He was a great eater until he was put on the ketogenic diet. After basically being force fed horrible foods he just decided he didn't want to eat anymore. He has gone from the 80th percentile down to the 15th. We're lucky if he takes two bites of each of his meals. Several months ago he started drinking Boost Plus which is basically just a nutritional drink. That is basically where all his calories are coming from. Just last week a decision was made to place a g-tube and start tube feedings to get more calories into him. He's also going to start feeding therapy so hopefully we can get him eating again! We're very excited about finally putting weight on him. He is skin and bones and looks quite emaciated.

So one year later I feel the nightmare is fading. It almost doesn't seem real, as odd as that sounds. I know we all went through it, but where he is now to where he was a year ago is unreal. I feel he has no where to go but up. He makes amazing strides daily. We are finally after a year starting to wean his medications. He still takes 12 pills a day, hopefully in another year that can be none! The medications do cause side effects we're excited to see go away. One thing is certain, he didn't have a future before this surgery. We were told he would most likely never leave home and would require our care for the rest of his life. Now his possibilities seem wide open! He has a future. He can go through school, and college if he wishes. He can have a job and live an independent life. He could even have a family of his own one day. Watch out world, this boy is going places!

3 Months

Ethan is 3 months out of surgery, and this blog is well overdue for an update. He is doing beyond fantastic, and our life is becoming normal in a way that we never thought to be possible. We often remember holidays around here not by the joy they brought, but by what "gifts" Ethan's epilepsy brought us that year. First off was Halloween, obviously a much loved holiday for kids. Two years ago we were fresh into this journey. He had only had 2 seizures up to that point. We were on edge of course, but had no idea what was truly ahead of us. We took him out and I remember one house that he got to where he suddenly looked up a little and dropped his candy. We knew nothing of different seizure types at the time, and although it struck us as odd, we didn't think much of it. He got home and just shortly after, and while sorting his candy he had his third ever tonic clonic seizure. This was the first one that both Mike and my Mother-in-law had witnessed, and that's a horror that never leaves you. There was shock and tears, and we watched our son have his first holiday taken from him as he lay postictle for the next 3 hours. Last year was slightly better. He was on his ketogenic diet which meant he could not have a single piece of candy, just one could send him straight back to the hospital. So we let him go as normal, but watched his every move making sure he snuck nothing. We took everything from him the moment he got home and attempted to trade some toy for his candy. Not how any 4 year old would wish to spend that day! But then there was this year, seizure free and like a new kid. He had a light about him we hadn't seen in all those years, joyfully running around the neighborhood dragging his sister along and telling her to go faster, him calling the shots. It was perfect, he was indistinguishable from any other child out there, and this Halloween will be remembered as his first seizure free, and back to being a typical child!

2010, 2011, & 2012

And that's what keeps striking us, we keep saying he's so normal, he's back to normal. So many parents get caught up in their kids being the absolute best, no less is to be accepted. Heaven forbid you come in second, not acceptable. Of course it's great to encourage them to be their best, but you must learn to accept their best. This stresses kids to no end, and can leave life long scars. But why not step back and wonder what's so bad about average? Why can't we just wish happiness for our children, nothing more? Average is perfect, average is great! After having no normalcy in our lives, and having an extremely delayed child I wish nothing but normalcy for him, because it would be a huge gift. Him being able to simply keep up with his class, and have normal relationships with his friends would be amazing. He is learning at an incredible rate, and he may be there in a few years. He missed 2 years of development, of retaining any information. He and Taylor play hide and seek. Ethan will count; 1, 6, 9, eleventeen, here I come! Taylor will count; 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 here I come! Developmentally they're nearly on the same level, her closing in on 3, and him missing 2 years making him around 3.5. Academically she's significantly ahead. That's hard to watch. But the surgery has finally freed his brain, and he's finally making steps in the right direction. He's writing his name, recognizing nearly half his letters, making observations about things like he's never done. The lights are finally on, and he's playing catch up! No doubt he'll get there, we just have to give him time.

A couple of weeks ago we were admitted in for a new EEG and sleep study. We were extremely nervous and anxious waiting for the news it would bring. We knew what we were seeing, zero seizure activity, and his breathing at night had become normal. But what would they actually see when they looked in his brain? We made it up to the hospital and were checked into our room. I get physically ill every time we have to go. The memories there are enough to haunt anyone. We sat around waiting for a long time, and later found out it was because another child needed 3 EEG techs hooking him up at one time because he just couldn't sit through it. What a proud mommy moment, my boy lays there stoic like the champ he is!

 

 Once he was all hooked up and the monitor was turned on, I saw all the spiking start. The ever so familiar signs that shows his brain isn't doing what it's supposed to. It was different, I saw the spikes reach the center of the brain and not pass through to the other side which showed the surgery was working, it was stopping the spread, but there was a lot of spiking, about every minute. I was getting nervous, and thought this meant the worse, we weren't seeing anything, but his brain was still a wreck. The sleep tech came in that evening to hook him up for his sleep study. Once again he laid
there not complaining as he was completely wired up. And once done, he fell straight to sleep. Could you sleep with all this over you?

 

When he had his first sleep study back in March, the tech was in and out of the room nearly constantly all night. This time I saw him come in exactly once. I woke up thinking that had to be good news, right? He came in to unhook the sleep leads in the morning. The techs can't actually tell you anything, but when I asked if he needed to turn on the oxygen at all, he responded with. "I didn't feel he needed it". No oxygen, his breathing was normal! It was seizures causing the breathing issues at night. I was still nervous about all the EEG activity I had been seeing though, but apparently there's a reason people go to school for years to read and EEG. The neurologist came in later to give us the results. Yes, there was quite a bit of spiking going to, however, the type of activity they were seeing actually corresponds with the extremely high dose of one of the drugs he's on, Clobazam. He's on a dose about 2.5 times higher than the highest recommended dose, and although it's been a drug that has worked fairly well for him, it causes changes in brain activity. Best news of all, he had ZERO seizures during the entire study, not one! What we had been seeing is what the EEG saw, no seizures! The surgery was working, and working great! We were going home off oxygen with concrete proof he was not seizing, I can't even explain how wonderful of a feeling that is!

Just after getting unhooked, and learning he's not seizing!

So we went home with one goal in mind, finally after 2 years kicking him out of our room! We took his bed down, his favorite toys, and his fish tank. All were arranged how he wanted, and it's amazing how much more space there now is in our bedroom! He is now living every kids dream, a nice big room attached to a giant playroom. He even had me print out a "No Taylor Allowed" sign, and yells it at her whenever she starts invading his new territory. We allow him to go up and down the stairs at will, after never allowing one step on them without us holding onto him. We're working very hard on taking a step back and allowing him to have the freedom that didn't naturally develop over the last 2 years. The fear is still there, and I don't know if it will ever leave. If I hear him make one of his typical seizure sounds, or fall suddenly I jump up and react before I know what's going on, and my heart races and adrenalin starts pumping. Obviously I'm not completely over everything that happened, and after only 3 months shouldn't expect to be. I still worry that in another month, next summer, in 2 years that they are going to start up again, and this whole nightmare will replay itself. I'm a worrier by nature, and really wish I could push those thoughts away. I still worry he will die every night, and often find myself sneaking down the stairs at 2 in the morning checking the blinking lights on his Emfit monitor to make sure he is breathing. When he sleeps a little late horrible thoughts start going through my mind. Hopefully someday these will at lease ease, and maybe pass.

His new room!

Right around the corner is Christmas, yet another holiday we mark with seizure activity, and yet another we wish to proudly announce was marked by none! He's so much more into it this year, so much more aware. He's loving every aspect. We let him go and pick out the tree he wanted, no matter how big or funny looking. We remind him that Santa is watching, and he's to be on his best behavior, and he gets it. We also know it's not seizures causing horrid behavior problems this year, and he's being held accountable. This is by far our happiest Christmas ever, and it's a time filled with joy and excitement for a change. 2013 is going to be a huge year. Taylor is 3 at the end of January, we're having a new baby at the end of February, and we get to watch excitedly as Ethan grows into a more amazing little boy every day! Our lives are finally filled with hope and excitement, instead of dread and constant fear. This kid is going places, and we can't wait to see where!



Picking out his tree.