Hewitt's Epilepsy Story
This is a hard story for me to tell. It still brings tears to walk back down this road. A road that began in 2008 when our 2 year old, Hewitt, was violently thrown into the world of epilepsy. he started with a single tonic clonic seizure in our backyard and rapidly added multiple seizures and seizure types over the next several weeks. We watched over the next year as our happy, strong minded, smart and healthy 2 year old regressed into a seizing, drooling, drugged up shadow of our child. It was a nightmare. He endured tests, hospital stays and blood draws only to be met with inconclusive reasons for his continual seizures. He received a diagnosis of Doose syndrome or Myoclonic Astatic Epilepsy. It is often described as a "catastrophic" type of epilepsy. They don't know what causes it and there is no known cure or defined way to treat it. Hewitt suffered from several seizure types that occurred up to hundreds of times a day and debilitated him in different ways. We had to rethink every day life for him. The most basic things became dangerous for him: walking, eating, sitting at the table, playing with his toys.
Much of my free time was spent reading everything I could get my hands on to help him. We fired 3 Dr.'s in one year as we sought to help him. I learned medical jargon, read articles and studies in medical journals and when I brought my research to our Dr.'s I was met with disregard and frustration. As I learned the different effects nutrition can have on our bodies, we decided to cut sugar and dairy out of his diet. When we made the commitment to do this, we didn't realize how much of an impact it would have. He went from hundreds of seizures a day to 10 or less. As I explained the changes to his diet and the resulting impact it had on his seizures to our Dr., she actually had the nerve to ask me what the two had to do with each other....Is our medical system so distorted that this woman with all of this schooling couldn't even acknowledge that the food he was eating could be contributing to his seizures? It made me sick and I began hating the medical system and all that it stood for. I was raised to "trust" Dr.'s and all their "wisdom" and as I was forced into the position to advocate for my child I learned a valuable life lesson to do my own research, and not take anything at face value! As we tried different medicine, Hewitt dealt with major side effects that included: swelling, anger, major behavioral issues, slurred speech, his walking regressed as though he was a 1.5 year old, he was 40 pounds and we had to carry him or push him in a stroller.
As you can imagine, this all took a toll on our family. Hayden and I drew together in a way that we never had before. Not many people really understood the intensity of what was happening in our home and we were a comfort to one another as we watched our little world seemingly fall apart. We didn't know what would happen. We knew he could die from a prolonged seizure, we didn't know if he would ever recover from the mental regression he had suffered and we were rapidly facing the possibility of now caring for a very high needs child. A child that once had surpassed all physical and mental milestones. Our hearts were broken, our faith tested and we felt helpless to protect our child from this disease that was taking over our lives. Over the course of that first year, Hewitt broke his collar bone, his arm, killed the nerves in one of his front teeth and had multiple face and head contusions from his falls. We became experts in looking for the signs of a concussion and skull fracture and I had running counts of seizure activity daily. On bad days, I would stop counting when he would have more than 50 in an hour. If you're wondering how a person has that many in an hour, they are split second seizures. He had absence seizures where he would space out for a second, myoclonic seizures that would make different body parts jerk - his arms would flail up and he would throw or drop whatever he had in his hand at the time. Often he would hit himself in the face with whatever was in his hand and not realizing what was happening, think that someone had hit him or throw a toy at him. His eyes would twitch and make different movements. He would have myoclonic astatic seizures that would cause him to lose all muscle tone and fall wherever he was. These started mildly, usually just falling backward with his head leading but they quickly progressed into full on, face first, body drops and this is how he broke his collar bone. He was standing in the children's section of IKEA one second and the next he was on the floor and dropped so fast and so hard his collar bone was broken. He also had tonic clonic (formerly called grand mal) seizures that lasted a few times until we had to give him emergency medicine to stop them. These might have been the hardest to watch. They're just one of those things you never get used to seeing your child go through.
People said things trying to be comforting....like comparing how their kid fell off their bike and got hurt trying to make it feel "normal," because all kids get hurt. Sometimes I didn't even know how to respond to those kinds of things. I knew they were well meaning but their words lacked comfort and understanding and just left us feeling isolated, misunderstood and angry. Ironically, the people around Hewitt that seemed to understand the most were the teens in our lives. They took the time to watch him and to see how bad he really was. My family was supportive but they were more than 2 hours away and couldn't be there for the practical day in and day out adversity. They ached with us...they prayed with us. Lots of people prayed for Hewitt. I know I will probably never know how many prayers were sent up on his behalf, but I am so thankful for all those prayers. God sustained us through that time. Although many times I felt like the only thing holding me up was His arms. We were pregnant with our fourth before this all started and if we hadn't have been, I don't know if we would've had more children after Hewitt. I was so scared this would happen again with a different child. It still plagues me, but I know it's in God's hands.
After firing our 3rd epileptologist we were desperate. We had an extremely supportive pediatric team at our Dr.'s office. They gladly continued to refer us to new Dr.'s and were frustrated at the treatment we were receiving. The cheered me on as Hewitt's advocate and encouraged me to fight to make him well. Our 4th Dr. was "the one." He listened to me, he discussed Hewitt's diagnosis and potential treatment options with me, and for the first time in a year I felt like he actually cared more about Hewitt than he did about his own knowledge about Hewitt's condition. But, not only that, he had been doing research on his condition. He knew the articles I had read, the treatment options that have worked, and those that hadn't, and it felt so good to be able to trust a Dr. again. I went into our first appointment with a chip on my shoulder and a clear idea of what I wanted our next step to be. His humility instantly put me at ease and as he took time to just watch Hewitt I knew he was the one God had chosen to help us. He convinced me to try one more medicine before going "my" route. I agreed, and Hewitt stopped having seizures after being on the med for 24 hours!! He had a cluster of 5 breakthrough tonic clonics a week after starting the med, but we were still titrating the dose, and when he got to his full dose he stopped seizing. It was a miracle. Not only did he stop having seizures, but he very quickly started regaining skills.
We had a follow up EEG 6 months after being seizure free and the Dr. was shocked to discover it was almost normal. We continued this way for the next two years. The policy was that if he stayed seizure free for 2 years we would start weaning meds. So, at the 2 year mark, we went in for a short EEG and a follow up appointment fully expecting to start weaning his meds. At the follow up, we learned he was still having seizures. They were mostly absence seizures, and they didn't seem to be affecting his development, but they were still there. I was so shocked that they were still happening and I hadn't even noticed. Before, when he had absence seizures they were paired with myoclonics so it was obvious when he was having them. But, now I wondered how long they'd been going on and how long I might have been mistakenly thinking he was ignoring me or not hearing me when he might have just been having a seizure. The Mom guilt set in quick and it sent me back to a dark place. It had been so long since we had been in the thick of it, I wanted to ignore it, I wanted to put it behind us but I couldn't. We upped Hewitt's dose. He had gained over 20 pounds since his original dose. We did another EEG, this time overnight in the hospital to see if the upped dose did anything. We discovered he was having them every few minutes still and still I am shocked to have been sitting right next to him and not even notice! But, now I question so many things in his behavior and have so many questions that will never get answered because they just can't. There's no way to know when he's having one in our normal daily life. We are in a weird place right now. The Dr. said if he's still having them when he gets to driving age they'll treat them more aggressively but because they aren't affecting his development we're going to keep his treatment the same.
So, that is where we are today. We continue to feel incredibly thankful that our 7 year old isn't dropping to the ground any longer. Yet, we are still dealing with the unknown of his future. Will he grow out of this like many children do? Is he hyper emotional because of the seizures or is something else plaguing him? He struggles socially and emotionally and as I watch our 4 year old pass him up in these two areas I feel discouraged yet again. God always provides some kind of hope. Even when I couldn't fathom what hope was in those dark days, He provided something! Today, I read a great interview with Chelsea Hutchinson's mom ( a young girl who died suddenly in her sleep of epilepsy). And in that interview she talks about how Chelsea fought harder than anything to just be herself and I was really challenged with how important it is that I let Hewitt be himself and not try to conform him to what my expectations of a 7 year old should be. I certainly don't want to raise any robots!
We now have a new task at hand....not only fighting these seizures but also helping Hewitt accept and love who God created him to be. To accept the burden of being "different" and hopefully see it as a blessing. I hope that as his parents we can continue to see the blessings and not just the burdens. I look at our life, and we have been given so many. I would invite you to pray for us if you pray! Pray for wisdom in how to parent him, how to teach him (we home school) and how to love him the way he needs to be loved and to raise him in the way he should go.