Yesterday was the day. (And I don’t mean St. Patrick’s Day–though it was that day too!)
Nope, it was the day we went back to the neurologist to follow up on The EEG Owen had in January. It was a pretty good appointment.
Owen’s seizures are complicated. They vary between drops and mild shakes. We haven’t found a pattern to them that would help unlock his triggers.
So, his seizures require a more complex approach. The doctor recommended we do three things, in a staggered order. That way if we see improvement from the least invasive approach we try first, we can hold off on the next step. It sounded like a good plan. So we got the ball in motion.
We are starting with a med change. Banzel is being added to the lineup, and Zonisamide is heading off the roster. This new drug is supposed to work well with the wave pattern seen in Owen’s EEG.
A referral has also been made to the outpatient dietician for consult on the Modifies Atkins Diet. Thankfully it is with the adult nutritionist and not the pediatric one who followed Owen on the Keto diet in 2012. I didn’t want to work with her again, just because of that diet’s lack of calories leading to Owen’s Pica. So yea–a new dietician to look at the situation. Fresh eyes are a good thing usually!
Finally, the neurologist also is starting the paperwork process for the Vagus Nerve Stimulator surgery. This will take six-nine months, and will possibly need to be down with the pediatric neurosurgeon in Seattle.
The good news is that by the time this approval process is finished, we will have a good picture of seizure control on both the new med and the diet. That means we can stop this process if we see improvement. It’s definitely an invasive option, and one that we are hoping to avoid if possible.
But, Owen’s seizures are causing him to lose skills. They change his personality and leave him lethargic and confused. We have to get them better controlled. So we are praying that one of these three new approaches will help us get our Owen back from the seizures he’s currently battling.
Puberty and seizures go hand in hand for people with Angelman Syndrome. As Owen gets older, the next few years could be really rough. That’s why I think it’s so important to enter this stage of life with good seizure control, and that is what we are striving for.
Your prayers on this journey would be much appreciated! Also, if you have experience with either the Modified Atkins Diet or VNS for seizure control, I’d love to hear from you! Thank you.
