Winning a Battle in the War on Epilesy

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!




5 responses to “Winning a Battle in the War on Epilesy

  1. You are not a dork. Arming yourself with knowledge will help all of you. You will learn whether progress is being made on a particular protocol that you are using or if it should be changed. You will feel you are as up to date as possible regarding the issues you are dealing with. It will lend peace of mind when you question yourself about whether you are doing all that you can or even doing the right thing. This will allow you to know you are the right parents for Jackson because you take the time to keep the situation monitored and with your support team his care is the best. You are defintely a dork – you are a caring, smart Mom and lovely woman. We love you.

  2. So glad to hear the seizures have been getting better over time! I love hearing the updates and seeing the pictures of Jackson! He’s adorable!

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