Friday, February 25, 2011


I laid in bed this morning waiting for Ethan to wake up. He stirred and turned to me and asked for my hand. He loves sleeping with people's hands, don't ask me why. I gave him my hand and he closed his eyes to fall back asleep. A minute later the jerks started. I felt his body tense up and his arm and face jerk rhythmically. I kept one eye on him, and my other eye on my book and waiting for it to pass. I hate that seizures have become a typical part of my day, and unless he has too many, or they are different or changed it's just another norm. I guess it's ok. I read that of all the "catastrophic childhood epilepsies", Doose is the best one he could have.... That's a good thing, right?
Yep, I have perfect kids:)

Ethan goes up to the hospital in 9 days. I've started to stress. It's going to be a whole new life for us. Every day is going to revolve around food; food prep, food shopping, getting Ethan set down and forcing him to eat the food. I just got done reading the book Keto Kid, one of the books recommended by the dietitian. It has a huge recipe section which is great, but I was literally sick reading it. This diet is made up of mainly fat, and you actually serve your child half a stick of butter and a glass of heavy whipping cream with his meals. Ethan is in no way a picky eater, so we're hoping for the best. The diet is so restrictive, you wonder if he's going to be happy. He has so many seizures that most of his days are spent sitting on the couch watching TV. You never know when or where one is going to strike, and it can be extremely dangerous if he has one in the wrong place doing the wrong thing. Hopefully I'll have success training him a seizure alert dog, but more on that later:)
This is "playing" these days

I spend alot of time thinking about his quality of life. When you have a baby you think of their future. What are they're hobbies going to be? Will they love sports, or love books, maybe both? What college will they go to? What career will they take? What is going to define the person they are? You never think it will be the electrical surges through their brain. But then you tell yourself all I want is for them to be happy. I spend so much time worrying if he will be happy. We took away school which was his favorite thing ever. We took away playgrounds because they are way too dangerous for a child seizing constantly. We're taking away all his favorite foods next. (But until March 6th he is literally eating anything and everything he wants whenever he wants it, lol! McDonalds 3 days a week? Yep, and I don't feel bad about it at all!) When is he going to be happy? When will he be Ethan again?
In a firetruck.... Happy!

A friend wrote me an email telling me of a friend of hers who has a now grown child that had epilepsy as a child and wanted to know if I would like to talk to her. I figured her daughter had a typical childhood epilepsy, but non the less I was excited to speak with her and see how life was now that her daughter was grown. She called and we spoke for a while. I was shocked to hear that her daughter didn't have a typical epilepsy, but actually had Lennox Gastaut Syndrome. Ethan is on a "spectrum" between LGS and Doose so a half step above her daughter. She told me of meeting a great doctor at Children's (where Ethan goes) and him initiating the ketogenic diet which turned her daughters life around. This was probably 20 years ago but the strange part is this is the exact doctor that changed things around for Ethan. He was the first epileptologist we met, and he is the one that finally diagnosed Ethan and is the head of the ketogenic diet team. Pretty big coincidence. She told me her daughter can barely read or write, but she IS happy! It gave me hope. This doctor and this diet, the same as her daughter, might be just the thing that turns his life around and insures he's happy. What more could you ask for anyway:)

But the thing is, even now, he is happy. He's frustrated, and sometimes angry at how he is limited, but he is happy. How can you look at this boy and see anything else! And come on, any kid that can have a seizure  and still manage to interact with his sister at the same time is doing pretty good:) (seizure video warning: )

Playing with sissy

On a side note there is no way around it at this point, we officially have a walker! I'm so sad for my baby to grow up. I want her to stay little forever! In the past week she is officially walking significantly more than crawling. When did she go and grow up??! With the more vertical lifestyle is coming a few big falls. But with each fall comes a lesson and she picks herself up and never stops moving, just like mommy:)
Monster Baby!
Thanks for the bad habit Aunt Cole....
Got in a fight with the couch...
My walkin' girl!
Oh, and she can fly too!!! Yep, she's afraid of beards which translates to afraid of Grandpa, lol! She does everything she can to not touch him.
Super Taylor!

Tuesday, February 22, 2011

Our Story So Far

This is going to be a long one! For anyone who doesn't know the full story, this will get you caught up. Up until October 12, 2010, Ethan had been a normal typical little boy. He had hit all his milestones on time, and had normal development. He had, however, always been extremely clumsy, and was a bit delayed in his speech, but never far enough behind to warrant any kind of intervention. Anyone that knows him will tell you he is just the happiest most easy going kid you have ever met. He has never met a stranger, and he's the first to make a new friend.

October 12th started out as a normal day. He had gone to preschool that morning (his favorite place!) and had come home. Taylor was sleeping, and Ethan kept climbing up on a chair to sneak into the snack cabinet. He kept bringing me different things and asking me if he could eat them and every time I would say no and take them back. I watched him, once again, climb up on the chair, then kind of slump down. I got up with a smile on my face to tell him to stop messing around, thinking he was playing a joke to get me to laugh. I looked at his face and his eyes were rolling into the back of his head, and he was gurgling. I knew nothing of the recognition of seizures, and grabbed him and started screaming his name. I fumbled around with my phone and dialed 911, he wasn't breathing. While talking to the woman on the other side of the line I was flipping him around and smacking him on the back because I, of course, thought he was choking. He started to come out of it right as the paramedics arrived, and fell asleep in my arms. The paramedics informed me that he probably had a seizure, and they would take him in. Once they were there, and he was breathing again I could breath too. The first thing I realized was Ethan had no pants on (once again, if you know Ethan you know he strips....). I was so embarrassed! Mike got home, and went in the ambulance with him. I was able to join him at the hospital once my mom got to the house to watch Taylor.

By the time I got there all tests had been run; blood work, CT, EKG, all the normal ones. Everything came back fine. They told us I must have missed a fever he had (I told them he didn't have one, why can't doctors listen). They told us that 1 in 10 will have a seizure in their life, and there was no way it would happen again. No big deal.....

In the hospital after the second seizure.
Of course they were wrong. On October 21st, just 9 days later, he had another tonic-clonic seizure (formally grand mal). This one was bad. It started with a scream, and his face froze and contorted. I ran to catch him as he started convulsing. His face turned blue and he vomited. Mike walked in just as it ended to find Ethan asleep on my chest, and me in tears. Once again we went to the ER where everything was found to be normal. We got a referral to a pediatric neurologist for an eval and EEG, and were started on our first of many meds to come.

After a 3 week wait, and another tonic clonic on Halloween, we finally saw the neurologist. We were told sometimes this just happens to kids (2-3 in 100 have childhood epilepsy) and usually there is no known cause. His EEG came out normal with, as he put it, "A spike or two that might have been something." An MRI was ordered just to be sure, and we were sent home to start the second medication of many to come.

Ethan continued to have large seizures. They would occur every 1-3 weeks or so. We would get so anxious when more than a week had gone by, and once a seizure hit, it was almost a relief. We could finally breath for a few days. During this time our lives started changing. We had a 3.5 year old we couldn't let out of our site. He couldn't play alone, he couldn't climb the stairs to his bedroom, and he could no longer play on the playground. He also had his MRI. It was so scary to be holding my baby girl outside the room, and watching them bring the gas mask over his face to put him out. He, of course, did great. It did come out normal which was a huge relief.

Sometime in early December we noticed when he would cry his face would freeze for a second almost as though he was about to have a seizure, but nothing would happen. This would happen multiple times a day. Our thought was maybe the meds were stopping a big seizure from happening or something. We mentioned it to his neurologist, but that was basically the end of it. These little freezes became large jerks, and these large jerks soon came with a loss in consciousness. Here is a video of the end of one of these seizures. All the videos I will share are graphic and show actual seizures. Only click on them if you are prepared for that. These episodes would happen up to 40 times a day. Another EEG was ordered, and his neurologist decided she wanted him admitted to monitor him, and change up his meds. We got him up to the hospital in early January, and started him on his third medication. The stay was short, only 3 or 4 days. As we would learn is the norm, the new drug combo seemed to get rid of his seizures for days, only for them to return worse than they were previously.

Doggy visitor before his EEG.

We were home 4 days seizure free. We even started to let our guard down a little. We had previously moved Ethan's bed into our room so we could keep a better eye on him, and this morning he was sleeping very late so I decided I would go downstairs and leave him to sleep. I had been downstairs for about 30 minutes or so, and I got a sudden urge to check on him. I ran up the stairs and saw him sleeping peacefully. I walked over to his bed to get a better look, and he started having a tonic clonic. I held him on his side until it passed, and he fell asleep. I called Mike to tell him to call his neurologist, and was upset for Ethan that he would sleep through school. Right after I got off the phone, he had another one, and without fully coming out of that one he had another. I gave him his emergency medicine Diastat. It seemed to stop the seizure, but 3 minutes later he started again. He was in status, and I had to get him to the ER. I threw Ethan and Taylor in the car. We're lucky enough to live 5 minutes from a new hospital which is great! They were able to stabilize him, and push more meds through IV. The decision was made to transfer him back up to the hospital in Denver where his neurologists were. On the hour and a half ambulance ride up he had another tonic clonic, and once we arrived he had another. While there he had another EEG which showed a very abnormal brain pattern, and 3 new meds were introduced, one of which was Banzel. I had never heard of this drug before, and my research showed it was used to treat Lennox Gastaut Syndrome. Why would they put him on a drug specifically for this when they hadn't mentioned any diagnosis to me? I questioned his neuro the next day and was told they thought he might have it. Once the new drugs were started he started having yet another type of seizure; absence, both typical and a-typical. Once meds were started, once again his seizures disappeared.... same as every time his meds were changed, or doses were changed. We were sent home.

There we sat, happy for 5 days because  we had almost convinced ourselves that it worked this time; we finally found a drug combo that stopped these horrible things. Our big concern during this time was the regression we had seen. Ethan no longer knew his colors. His first guess was always green then yellow, but he had no idea. He also lost the ability to count. He could previously count to about 15, now he says one-two-six.... My 3.5 year old couldn't even count to 3. He also used to be able to draw us pictures. His favorite movie when I was pregnant with Taylor was Up. He would draw a house with balloons coming off it. Now all he could do was scribble.

He went to school that Thursday (which would be his last day) and when I went to pick him up I was told he had hit his ear. His ear was all bruised up, but no big deal. I got Taylor strapped in her car seat, and went to strap Ethan in and he had a tonic clonic. People stared, or walked away as I tried to hold him in his seat as his body violently shook. The seizure passed, and he fell asleep and I pulled out to go home. Right as I turned onto the street he had another. When I finally got him home he was exhausted and I laid him down on the couch to sleep. I kept a very close eye on him, and he started seizing again. This one started out as a typical tonic clonic, and morphed into an atonic/myoclonic type thing (I am obviously no doctor, lol!). This episode lasted a total of 11 minutes. I administered diastat, and it didn't stop for an additional 5 minutes. At this time our neurologists informed us that his case was just above them, and we needed to see an epileptologist..... Really wish they would have told us that a month before. We were referred to The Children's Hospital. Here is a video of kind of what this seizure looked like. Once again, this is graphic so don't click the link if it will bother you.

Getting wired up.

We ended up being admitted to Children's before our appointment, Ethan was just seizing so much, and we weren't waiting 3 months basically without a doctor. Once I got there with him, it was so different from the other hospitals. I was woken up in the morning by a neurologist wanting to know all about him, I didn't have to wait around all day for a doctor to show up! She was later followed by a team of pediatricians, and then later by a team of neurologists and epileptologists all there for my boy! I was so happy to be there and be taken seriously. I showed them the videos I have posted here, and they all said they didn't even know how to classify that second one... He was hooked up to a 24 hour video EEG. I couldn't take my eyes off the screen. I watched the lines go crazy every few minutes, and knew if couldn't be normal. In that 24 hours I read everything I could possibly find on how to read an EEG, and came out with about a paragraph worth of knowledge, lol! All I knew is what I saw was not normal. The neuros came to see me the next morning and gave me the news I had been dying to hear, but at the same time never wanted to hear. They had diagnosed him. He has a severe form of Doose Syndrome. His actual words were, "In a grey area between Lennox Gastaut and Doose". Ok, we finally had an answer, so we could move on from there. Shockingly, they decreased his meds while we were there. We didn't think they were doing any good anyway, just making him throw up 3 times a day when he had to take them.

I took him home, and we began reading and learning everything we could about Doose. From the very start of this whole thing I had been very interested in the ketogenic diet. I figured if I could put food in my child to stop his seizures, why would I want to put all these drugs in him? At this point, Ethan has been through 7 different medications. Yes, 7 different powerful drugs in high doses, and none seems so have done much of anything. In fact, yet another new type of seizure popped up, and I happened to get the very first one on camera: We made the decision we were going to push for this diet, and not accept anything less. We went into his followup appointment prepared for a fight, but were pleasantly surprised to find the doctors agreeing with us. That day we started the labs for the diet, and scheduled a lumbar puncture in preparation. All the labs have come back good so far, and I assume no news is good news on the lumbar puncture, but he was sore for a few days. 

We are scheduled to be admitted to the hospital March 6th to start the diet. We will be there 4-5 days to slowly introduce the foods and watch his body for a reaction. Although this is a "diet", it's not necessarily good for him. It is deficient in many nutrients, and made up mostly of fat. The ratio he's going to start on is a 4:1. That means he will have 4 grams of fat for every 1 gram of carbs and protein. The diet is basically broken down into thirds as far as success goes. A third has a greater than 80% decrease in seizures, another third has a greater than 50% decrease, and another third sees no decrease. It also seems to have alot of positive effects on behavior and cognitive ability. We are really hopeful for the diet, but know it isn't the miricle cure for everyone. If we see a 20% decrease in seizures that will be a huge success! As it stands he is having anywhere between 5-20 seizures a day, and we suspect many more at night. If you have read this far than I am shocked, lol! That has been our last 4 months in a nutshell, and there will hopefully be many more positive posts to come!