What great balance!
This blog entry is a pretty hard one to write because it chronicles the evolution of Luki's seizures. Around 2014, the happy YouTube videos of him playing with toys, giggling and making progress with his speech and physical therapy were replaced by a starkly different set of videos of him being overtaken by various types of seizures. This is the age when he started having major tantrums as if he was in severe pain. The first type of seizures we noted at the age of 4 were of him spacing off for about 30 seconds followed by 1 to 2 hour naps. These "complex partials" would increase in duration and frequency then disappear altogether for about 3 months then come back with a vengeance. He would then have uncontrollable twitching episodes which scared me as much as it did Lucas (he is nonverbal so I can't really say for sure, but there was terror I saw in his eyes while they were happening). Thankfully, he does not have these types of seizures anymore. Appropriate medications have successfully eliminated almost all of these for two years now. Knock on wood, they don't come back but I am constantly on high vigilance and assessing his behaviors and mood to see if he has had any mild, visually undetectable ones. A few weeks ago, we noted mild head drops followed by short naps making a comeback but a small adjustment in Banzel and lamotrigine (two seizure medications he is currently on) dosing solved the problem. The neurologist suggested against started new AEDs until we max out on the ones we currently use. In the past.we tried Keppra and felbamate as well as CBD/fish oils but have ditched them all because these two AEDs are working incredibly well for him, for the time being. The next one I want to try , if we need to add another, is epdiolex currently on Kaiser's formulary. Although head drop seizures were the shortest seizures - a quick head drop with no need for long naps after, they were the most dangerous because he would fall and hit his head causing injuries to his face. And, being the avid climber that he is, like most Dup15q children, he would usually fall from a high place and compound the severity of his injury which landed us in the ER several times.
I am forever grateful to other parents of Dup15q children who experience seizures for sharing their enormous knowledge with me of medications that worked, or didn't. The cup of sorrow is best drunk in Company. I am also immensely grateful for the research driven by the Dup15q Alliance to determine the efficacy of various antiepileptic medications as well as collaborating with biotech companies and academia to champion clinical trials of medications that offer a more personalized approach for the Dup15q demographic. I am also grateful for advanced technologies that help assess and treat seizures like this piece of portable EEG equipment called Ceribell, that can be used by nursing staff in an inpatient setting or by concerned parents at home. https://ceribell.com/
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