Holden was 2 years old when he started having seizures. The first night we saw one we had no idea what it was, he seemed scared and quickly jolted his arms around is mom a couple of times in a row. It almost seemed like he got the chills or got scared. We didn’t see it again for over a month. Slowly we started seeing it more and more; monthly, then every couple weeks, then weekly until he was having clusters of these little “jolts” on a daily basis. At his 3 year old checkup we explained these episodes to his pediatrician; we were concerned Holden may have Tourette’s syndrome or something. When the Doctor suggested it sounded like Epilepsy we thought he was crazy because this was not what we understood seizures were like. After doing MRI scans and EEG tests we found two things. First: According to an MRI scan Holden’s brain is perfectly healthy. Second: According to the EEG tests Holden has abnormal brain activity in the frontal lobe left side. There is no good explanation as to why Holden suffers from seizures, nothing they can pinpoint like a tumor, brain trauma or genetic disorder. We started medication trials after the EEG results. We first treated Holden with Kepra and worked him up to a max dose for his size….no reduction in seizure activity. We then added Depekote to the Kepra and maxed that out with it….no reduction in seizures, however we did start to notice some behavior issues and weight gain. We then added Zonisamide to the other 2 and that horrible cocktail of meds was just too much for our little boy to handle. He started to experience extreme depression, crying all the time, never happy and never smiling. There were times he completely “zoned out” non-responsive to our questions and we would have to snap him out of these spells all the while still having his seizures. At that point we decided to take him off the pharmaceuticals so we could have a happy child with seizures instead of a depressed child that has seizures. We continued to deal with these clusters of myoclonic jerks (Intractable Epilepsy with complex partial seizures). November of 2011 Holden started having a second type of seizure that were physically much scarier and dangerous. This seizure would hit suddenly, he would clutch his chest and fall to the ground convulsing and biting and grinding his teeth and usually chunks of his tongue would be bitten off. He started with one or two a week and got to the point that he was having 12-14 a day of those “drop seizures.” The most dangerous part of those are that he could fall at any time, with no warning and hit his head, fall down the stairs, fall into the toilet while going potty…etc. He could never be alone at any time ever. We did some additional test for these new seizures of Holden’s January of 2012 and found Holden now had Epilepsy with focal onset seizures in addition to his previous diagnosis. Luckily we have been able to control those physically intense seizures with Trileptal, however the clusters of myoclonic jerks continue without any drugs showing any signs of control.
These little attacks on Holden’s brain every day, multiple times a day, have made learning and growing intellectually almost impossible. Holden lost many of the things he knew at 3 and 4. He lost his knowledge of colors, numbers, letters and shapes, and re-teaching him these basic things has proven to be VERY challenging. Holden is in the first grade now, he just turned 7 in March of 2014 and we are still working with him on his numbers (1-20), reading and many other simple and basic things most kids in preschool learn quickly.
The seizures are hard to deal with and it is heartbreaking to watch him suffer through it but one of the hardest things to deal with is the emotional instability or Autistic behaviors that typically come with epilepsy. We are not sure if these behaviors stem from the seizures or are side effects of the medications, either way they are a challenge. Simple tasks like deciding what to eat for breakfast, or getting dressed for the day can turn into emotional breakdowns that can last for hours. Getting Holden (and my other kids) to school on time is next to impossible on most days but I do my very best.
We have recently left our friends and family, and everything we love, and moved to Colorado to try extracts from cannabis oils that have shown amazing results, improving the lives of children that suffer from epilepsy. Hopefully this works for Holden and improves all our lives. If this does work for Holden we will be legally “stuck” here in Colorado until the laws change and allow these important oil extracts to be allowed in all states, until then the only way we can see our friends and family is if they travel to Colorado to visit us. Not very fair.
Thank you for reading and we hope you can empathize with the stories of so many families that desperately need access to this medication in every state. Please help us fight for this right to be able to come back home WITH this medication if it is working for our little Holden.