Your child has gone through all the tests including an MRI and an EEG. Your child has had two or more seizures. You sit anxiously in the doctor's office to wait for a diagnosis. Your child is given a second diagnosis to his or her autism. Epilepsy. Before you have time to catch your breath an array of medication choices are presented. But how do you decide? In this post I am going to share our journey on selecting an anti-seizure medication for our son, Max.
Before I begin talking about our personal experience I want to share some general questions you should ask your child’s doctor before selecting an anti-seizure medication. It pays to do your homework and research like crazy. Don’t just rely solely upon medical textbook references. Visit epilepsy forums on-line and talk to other parents who have a child with both autism and seizures. In the end you want to have a well rounded perspective on what these meds may or may not do for your child.
Questions to ask your child’s doctor:
• How well does this medication work to treat seizures? What percentage of your patients do well on this medication?
• Will this medication interact adversely with any other medications and/or supplements my child is taking?
• How soon should we expect improvement?
• What kind of side effects are possible? How do we deal with these side-effects should they occur?
• What happens if this medication does not work out (severe side effects or no improvement in decreasing seizures)? How do we wean from this medication in this case and what is our second choice for a medication?
• Is the generic form of our chosen medication effective or do we need the brand name version?
Our Medication Journey
When my son had his second seizure his neurologist decided to take pro-active steps to prevent any more seizures and suggested a couple of anti-seizure medications including Keppra and Zonegran. Max’s neurologist was very keen on the Keppra as he told us it was fast acting and that there were not many side effects with one huge exception. He then told us of the “Tazmanian Devil” effect where some children can become more irritable and even aggressive. And as you can see by this Circle of Moms forum, he wasn’t kidding. However, he cited a statistic that it is a low percentage of kids who may have this side effect. He cited 3%. I told him that we already have a Tasmanian devil on our hands and that I was extremely worried about that particular side effect despite the statistics. So we chose Zonegran as our first choice.
My son’s neurologist told us that the main side effects possible with Zonegran would be that his appetite may be suppressed and that he might have trouble sweating normally. Ugh. There are always risky side effects. Which ones are worse? This is what makes choosing such medications so very difficult for parents.
