Back to Friday, April 22, during her "seizure-free" week; we were doing some Earth Day fun with Bug's friend Maddie. Bug was sitting in her Bumbo chair enjoying the feel of paint between her toes when all of sudden she would burst out in shrieking tears for 2 seconds and then be fine again. She did this twice with me thinking it was her ongoing teething pains but then I started to think that this sounded much more intense so I started watching her face mostly when I noticed that right before the shrieking her arms would flail out, tense up and go straight out to the sides and then she would relax. She did this about 7-8 times over a 4 minute period.
They looked like a more severe form of the myoclonic jerks she used to experience after a tonic/partial-onset seizure. Bug has not had that jerking motion since that day. I talked to some fellow moms that have daughter's with epilepsy to get some idea of what the jerks might be from and did some research online. I found out a couple of things to talk to Dr. Coleman about at our next appt.
1.) Body & brain adjusting to new medicine
2.) Myoclonic Seizures
3.) Infantile Spasms
4.) New seizures developing
5.) Dravet Syndrome (tested negative for this in the past)
Naturally, this was the first topic we discussed at her appt. with Dr. Coleman. I demonstrated exactly how I saw the jerks and crying for Coleman since I didn't capture them on video.
Coleman said that I need to keep an even sharper eye out for these motions because if they happen again it could be Infantile Spasms which is another form of epilepsy and she would need stronger medication for such as steroids. But because they only happened the one day and it was 2 hours after her morning medicine dose he feels that it was most likely Bug's brain reacting to the new medicine. Coleman said that medicine's have an effect that can change the way a seizure starts or looks and that is another possibility of why she had the jerks. The number one thing that Michael and I were concerned with regarding the jerks was that she had them while she was wide awake. She's never had a seizure outside of sleep. Coleman said that there really isn't a direct answer for why, just possibilities.
We also discussed her upcoming appt. with Dr. Siatowski, a leading neuro opthomologist in Oklahoma. He kind of let us know what to expect and what he would be sending to Dr. Siatowski as far as notes, MRIs, EEGs, etc.
Dr. Coleman said that he feels good about this Trileptal because it's the first medicine to take control so quickly and that we need to call him if we see the jerks again or if the seizures become frequent again. Other than that, we don't see him for 2 months.
We haven't seen any jerks since that one time. She also hasn't had a seizure since Wednesday night. Please keep Buggie in your prayers as we give this medicine a fair trial.
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