I spent my career before Tim got sick working with children on the autism spectrum. First as a paraprofessional and later as an ABA Therapist. I earned my certification as a Board Certified assistant Behavior Analyst during my third year as an ABA Therapist. I went through med changes with many children over the years. And yes, they were hard. But I was only with them six hours a day. Assuredly their families were the ones who went through the bulk of the behaviors that invariably occur while changing meds. Now I have such a greater appreciation for what those families faced.
For years now I've blamed Tim's ever-increasing frustrating behaviors on the effects of the tumor and scar tissue that has invaded his brain. Granted it may still be what is going on. However, once he started seeing a neuropsychiatrist this past November, they strongly urged us to get Tim off of Keppra as it is known to cause behavior issues and they couldn't adequately work on changing his behaviors without knowing if Keppra was the cause of them. I was so frustrated with myself at this point as I knew from kids that I had worked with in the past that Keppra does this, but had just completely overlooked it with Tim. I immediately got on the Internet and started reading up on what kind of side effects people saw from this medication.
Over the years, behaviors have cropped up with Tim. Some started way back and some have been more recent but many of them seem to fit with what is reported for this medication. As I said in my first post, Tim's biggest presenting symptom was anger. So when we started to see these rages that would take place here and there, we just assumed it was again the brain damage caused by the tumor and scar tissue. It isn't like before where he was angry all the time, rather he is unable to control himself sometimes if he gets overly excited or the kids are loud, or he's startled in some way. According to many reports, Keppra causes these rages which have even been named "Kepprage."
Another behavior we have been facing with Tim, is his constant restlessness. It presents in a couple of forms, one of them being more concerning and one just plain annoying. The concerning one is that he wanders all of the time. Last fourth of July, he wandered away from us in Boston and we couldn't find him for over 3 hours - it was terrifying! The other behavior is constant wiggling/shaking and this need to forcefully hit his leg with his fist all of the time. It drives us all crazy! And he seems completely incapable of controlling it. Turns out Keppra can cause restlessness and tic-like behaviors.
And lastly, people who have been Keppra for a long time and then come off of it report a feeling of coming out of a fog. I now have to wonder if maybe he'll be more with it if he doesn't have Keppra in his system. Again, all of these things can still be directly related to the brain damage but we'll never know without a change in meds.
So, after that first neuropsych appointment, a med change was recommended. He was going to titrate up on a new med, Lamictal, which was known to be a mood stabilizer as well as an anti-seizure med. And once he was at full dose, he would slowly wean off of the Keppra. Sounded like a great plan until about three days into it when he suddenly didn't have small rages anymore but became borderline violent. Lamictal was immediately stopped and after about a week or so, he returned to how he was before Lamictal.
We waited a couple of weeks to see his neurooncologist and at that visit it was decided to try weaning him off seizure meds completely since he had never actually had a seizure. Things were going great for a week and a half as he went down slowly on the Keppra. He was hitting his leg less, he was able to sit for longer periods of time, and his patience was far better in regards to noises and activity. I was feeling hopeful for the first time in a while. And then, on his birthday no less, he had his first seizure. It was terrifying for the kids but somehow I remained incredibly calm through the whole thing. Not sure where that came from!
Anyhow, during our trip to the local ER, they consulted with his doctors at MGH and decided to not only bump his Keppra back up but also to start a new med, Vimpat. Again, he is going to slowly titrate up on the Vimpat and once he's at full dose, he will wean off of the Keppra. It was beyond shocking when I went to pick the Vimpat up at the pharmacy and found out it is $100 a month but if it works, then we will make it work financially. This week he goes up to the full dose and next week he will begin weaning off of Keppra. I can't wait to see if some or all of his behaviors improve. The Vimpat so far has given him some issues with short term memory - he will ask questions over and over again that we have just answered. But I'll take that over the other behaviors any day! He's also pretty tired but since anti-seizure meds are known for that and he's on two of them right now, that's understandable.
I try to tell myself not to get my hopes up but I truly am so hopeful about seeing positive changes once the Keppra is completely out of his system. I really hope I am not thoroughly disappointed!
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