One way that lissencephaly manifests itself is through seizures. In fact, we have found out that many neurological disorders have the unfortunate co-diagnosis of epilepsy. Jackson’s seizures are referred to as infantile spasms. They are less pronounced than what you would normally think of as a seizure, but just as serious. Jackson will do what appears as a reflexive jerk of his legs or arms or both, usually upon waking and usually in clusters. Sometimes the jerks are very mild, to the point that they are easy to miss. His type of spasms can be difficult to control and something that we are always going to have to fight. However, we are very excited to share that we are currently doing well in that fight. Jackson’s seizure/spasm activity has been greatly reduced via medication, to the point where they are virtually non-existent. Take a look at the graphs below to see how well he is responding! Feel free to comment that I am a dork for making these graphs; I can take it.
One of the medications he is on for seizures is very scary. It has a 30% chance of loss of peripheral vision. Still, we have learned that if the seizures are not controlled, any possible development is much more difficult. And we can attest to that truth — now that his seizures are controlled, we are definitely seeing developmental gains!