Jaron’s Epilepsy Story

Jaron was born during an ice storm in December of 2009. It was a scary drive to the hospital, but we made it. Then Jaron was born with a hole in one of his lungs. Being the resilient kid that he is, he healed quickly and were on our way home in the normal 48 hours. Jaron developed normally and was a very easy kid to raise and he hit all of his milestones on time.

The day before Jaron’s second birthday, we were having lunch with friends when sDSC_0048omeone asked, “What is Jaron doing?” I looked over to see Jaron’s eyes halfway open and his arms and legs were jerking up. It happened quickly and he was back in reality again and acting normal. We thought maybe he was falling asleep and his body was jerking like one does before you fall asleep. These types of jerks became more obvious over the next few weeks. He would only have one a day, but the duration was getting longer. We decided the jerks were something that needed to be checked out by a doctor. The doctor decided Jaron needed an EEG. The EEG confirmed the fact that Jaron had epilepsy. We were referred to a neurologist and he was put on Keppra. The Keppra worked. After a year of being seizure free we thought we were just coasting into the 2 year finish line when we could wean Jaron off the medicine and forget anything had ever happened.

March 10, 2013, proved us very wrong. Jaron woke up on a Sunday morning groggy and not feeling well so I decided to cuddle with him on the couch. While we were cuddling, Jaron would have his first of 3 tonic clonic seizures that day. Each tonic clonic lasted 3 minutes. He would go to sleep after the seizure only to wake up and have another. Since he had never had a tonic clonic before, we took him to the ER. While we were waiting for doctors and tests results, Jaron sat on the bed and screamed. The seizures had made him so disoriented that he didn’t know what was going on. He screamed because he was scared and he refused to drink. They finally admitted Jaron and gave him an IV medication to stop the seizures. The next day we were sent home.

Two days after his visit to the hospital, Jaron’s daddy went in to Jaron’s room to check on him and witnessed what would the first of hundreds of drop seizures. We informed his neurologist what we were seeing. He suggested we start Jaron on Depakote. The Depakote worked for a few weeks, dropping his seizures form 80 drops to a day down to zero for a few days. Then its effectiveness wore¬†off and the number of seizures increased again. We played the up and down game with Depakote for two months. During those two months his neurologist never told us what he thought was wrong with Jaron. We wouldn’t see him and he never called to tell us what was wrong. He would only have his CNA call with medication changes. After two months, we realized that the Depakote wasn’t working so the neurologist sent a prescription for Clonazepam. There are a lot of side effects with Clonazepam. I gave Jaron two doses and saw my 3 year old walking around like he was drunk. I decided I wasn’t going to give Jaron another dose until the neurologist would tell me what was wrong.

Since the neurologist wasn’t communicating with us, I decided I should do my own research and came across a type of epilepsy called Myclonic Astatic Epilepsy, also known as Doose Syndrome. It fit the description of Jaron’s situation perfectly. I knew in my heart this is what he had. As I researched how to treat it, I became scared because it can be very difficult to treat as it usually doesn’t respond well to medication. One beacon of hope in reducing or stopping Doose seizures was the Ketogenic Diet. I did research on what it would take to get Jaron on the diet. Doernbecher Children’s Hospital in Portland had a Keto program and I contacted Jaron’s Primary Care Physican to begin the referral processes. She told us it would be a month before we could get into to see someone at Doernbecher. I decided to us that time to prepare our family for the changes in our lifestyle that would happen when Jaron started the diet.

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Jaron’s first keto meal in the hospital. Turkey, lettuce, mayo, and cream.

It was during this waiting period that an article in the local newpaper featured Nora’s story. I contacted Ted and Christy through their blog and within a week was sitting in their dining room discussing what I would need to be successful. As I walked out of their house my husband called and said that Jaron was falling every 2-5 minutes and that we were headed to the emergency room. The ER doctor transferred us to Doernecher. The next day the doctors at Doernbecher did an EEG to confirm that Jaron had Doose and at my request Jaron was started on the Ketogenic Diet at a 3:1 ratio.

I would like to say the diet was an immediate success… but it wasn’t. It did drop the seizure count down to 70 seizures a day. This was a big improvement form the 200+ he was having. Over the next 3 months, we steadily increased the ratio. During those three months, Jaron put his teeth through his lip several times. He had scraps and bruises on his head form falling. We had to get him a special epilepsy helmet. Two week after being at a 4:1 ratio he was still having seizures and I wondered if the diet was really helping. But I promised the dietitian I would stick it out 6 months so I pushed through. Finally a month after we transitioned to a 4:1 ratio, Jaron went seizure free. He would go two months seizure free before having a few breakthrough seizures. November 11, 2013 Jaron had his last tonic clonic in the early morning hours. We are now 16 months seizure free and we have weaned him off the Keppra and Depakote that he was on from the beginning. We are now exclusively on diet therapy.

The diet has not been easy, but has been worth it. There was a rough spot in the beginning where we struggled to get Jaron to eat his food and take his medicine and supplements. Lots of tears and begging and bargaining to get the food down. It has taken work to create foods similar to what his peers are eating. It is worth all the hard work because today Jaron is a normal 5 year old boy. He loves the food he eats now. Best of all, I not longer have to fear him falling at any moment and hurting himself.

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