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Isaiah’s Story

Isaiah is my miracle. Let me tell you his story. Isaiah was born 9 days late, everyone always assumes he was premature because of all of his health problems, but he was a long way from premature. Within the first 2 weeks we knew he had a vision problem. I can’t really explain it, but I just knew. I was mistakenly told that a baby needed to be 6 months old or older to test his vision. I waited until he was 7 months old, then found out he had Duane’s Retraction Syndrome in his left eye and was very near-sighted. Isaiah’s development wasn’t keeping up with other babies his age, but I figured he was just progressing at his own pace. He began sitting up at 7 months, so I figured we were on the right track. Isaiah began to have ear infections and eye infections at about that time, we couldn’t seem to get them to go away. The eye infections led to a clogged tear duct (or maybe the clogged tear duct lead to the eye infections, it’s a chicken and egg thing) and he was very sick with ear infections for more than the next 6 months. All around he was a very sick baby. When Isaiah was 9 months old Isaiah was sitting on my bed playing with the telephone. He dropped the phone on the floor and sort of dove after it. He landed on his head and began to cry. We lived in a basement apartment at the time, and the floor was concrete under the carpet and pad. He fractured his skull. No blood, not even a bruise until a week and a half later. He was a trooper. The skull fracture did no permanent damage that they have ever been able to find, but it did facilitate us looking at his development a little closer. Because of the fracture we were sent to a physical therapist for evaluation. Isaiah was diagnosed as developmentally delayed. We went through years of therapy (physical, speech, occupational) with no marked improvement. He started crawling at 11 months, pulled to a stand on his first birthday, and learned to walk when he was 19 months old. He was this quiet child that had to be lead into any and all activities by the hand or he would just sit where you left him last. He had a few words, but he didn’t use them very often. On Memorial Day of 2000 Isaiah had a seizure. He was sleeping and started tremoring. It was scary, we took him to the local hospital, spent an ungodly amount of time waiting to find out what they do in that kind of case, and they came in, said “Yep, he had a seizure” and sent us home. It was a royal waste of time. He was 2 when that happened. He started preschool in the public school system the next school year when he turned 3. The following autumn teacher pulled me aside and told me that she thought he was having seizures. His speech and large motor skills had gotten better at this point, but I always had to call his name 10-20 times before he would respond. 3-and-a-half was a rough age for us. He was mean most of the time, and I had a horrendous time getting him to go to bed at night. When his teacher suggested seizures, I told her that they would have to prove it to me. I called my Neuro’s office (we already had a neurologist because of the delays) and told them what the teacher said. They begrudgingly said they would schedule an EEG. It was also at this same time that the eye doc finally put him in glasses. They told me when he was diagnosed with Duane’s that he would be in glasses by the time he was 4, but continually refused to prescribe them until he was 3 and a half. When the Neuro called me with the results of the EEG I knew it was not good. How often does the neurologist herself call you? This was my one and only experience with it. She said there was seizure activity on the EEG and she wanted me to come in and talk to her about it. That appointment was essentially a crash course on first aid for seizures; she sent me home with quite a bit of reading material on epilepsy. It turned out that Isaiah was having hundreds of seizures a day, which is why he always seemed to be ignoring me. She prescribed Tegretol and sent us home. Tegretol was a nightmare. It didn’t stop the seizures, he had to take it 4 times a day, and his was tired and sleepy all of the time. We tried that for about 2 months before they switched him to Lamictal. When we started him on Lamictal he was having drop seizures. Those were scary, but thankfully they didn’t last long. Isaiah turned 4 at the same time we were slowly increasing the Lamictal to a therapeutic level, and all of a sudden he started to talk. He had perfect articulation and a larger vocabulary than most 4-year-olds so the school discontinued speech therapy. We have never had to go back. The Lamictal may have been a miracle in and of itself, but it was not without its drawbacks. The higher the dose of Lamictal, the worse Isaiah’s behavior became. Every time they increased the Lamictal because of break through seizures the worse his behavior got. He was a frightening child at times. He ran away from us in public a lot. I was constantly afraid I would truly lose him and never see him again. When he was 5 we sought a second opinion about a second AED our current Neuro wanted to put him on. I didn’t think a second drug was the answer to our problems at that time, so I made an appointment with an Epileptologist at Swedish Hospital. He ran a 5 day telemetry (video EEG) and told me that Isaiah seemed to only be having seizures at night. At least that is what the EEG showed during that time. The Epileptologist reduced Isaiah’s Lamictal to less than half of his previous dose and prescribed it only be given at bedtime. I was a little skeptical; I know he at least previously had daytime seizures. That is what prompted us to look at them as a possibility in the first place. But the immediate difference was positively amazing. My beautiful son was nice again! And the really odd thing was that he seemed to have fewer break-through seizures! After that second opinion from the specialist in Seattle we went back to our local Neuro. She was angry that we sought it out in the first place and refused to see Isaiah as a patient any longer. Isaiah’s Pediatrician recommended a Neurologist named Dr. Sotero at Seattle Children’s Hospital as a replacement for the Neuro we were seeing here is Spokane, and we have traveled across the state ever since. My husband and I decided after 2 years on the lower dose of Lamictal and very few seizures that we would like to try to get him off of all drugs and see what he is like, get to know our child, free from the influence of brain altering drugs. He hadn’t had but a few small seizures in those 2 years after the Lamictal was reduced to what most professionals would deem not even a therapeutic level of the drug. We are now convinced that for Isaiah, high levels of Lamictal mimic seizures. We started looking into the Ketogenic Diet as an option to get him off of Lamictal. We emailed Dr. Sotero and asked him about it. He connected us to Elaine Cumbie and she told us to buy the Freeman book and to check out a particular website. If we were still serious about wanting to start the diet after all of that reading, then she would talk to Dr. Sotero about it. That was when we found out that the diet can effectively be counted as a potential cure for epilepsy, and that a percentage of children who are successful on the diet never have seizures again after weaning off of it. We were very excited, we had no idea, we were just trying to get him off of meds, maybe even just for a short time, but to possibly be cured?! We were pretty pushy about it when we found that out. The staff at Children’s was wonderful. It took about six months for all of the testing to be done so that we were ready to start the diet. That finally happened in September 2005. We waited until after his 8th birthday (after Halloween, Thanksgiving, Christmas, and his birthday) to start the diet. We started 2 days after his birthday, actually. Isaiah’s last seizure was on December 14, 2005. He has never had a seizure on the diet. He still has some “epileptic activity” during sleep according to his last EEG, and that was with Lamictal and the diet. He has been drug-free since September 18, 2006. He is scheduled for an EEG in March 2007 to see if it looks any different off of Lamictal. Just last month I found out that Isaiah no longer qualifies for special services at school. That is a milestone that I never could have imagined when he was little. We did hold him back a year, he started kindergarten a year late, but he is up to grade level in every area and no longer qualifies for occupational therapy which was the only special service he has been receiving for the past few years. We are now past that 1 year mark for the diet, we only have 1 more to go before we can start weaning him off of it. I think he is going to be successful. I really don’t think he will ever have a seizure again.

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