January 2025 Update

It’s difficult to update as often as I’d like when we’re in the midst of life. But, there have been some changes, good changes, that I want to make you all aware of.

We have reason to believe that being on Depakote for so long has caused some slight brain atrophy. According to David’s latest MRI results, there is some there (it is a small but distinct difference from his previous MRIs in Miami), and about 2 1/2 years ago, we started seeing excessive drooling upon the increase of Depakote. Apparently, Depakote is known to cause brain atrophy (many more anticonvulsants are as well, unfortunately). Early last year, I found peer-reviewed research that claims those with Depakote (also known as Valproic Acid) induced brain atrophy have seen atrophy resolve once taken completely off Depakote. Thus began my campaign to get David off this drug.

We tried Zonisamide as we reduced Depakote, but unfortunately, it wasn’t potent enough to keep up with the decrease. In addition, it significantly reduced David’s appetite to the point that I was afraid he’d need a feeding tube if things didn’t change quickly. Thankfully, we reduced Depakote from 625 mg BID to 375 mg BID before making the switch from Zonisamide to Xcopri. With the reduction we saw a decrease in drooling and so much improvement in David’s behavior and cognition.

Unfortunately, we did see withdrawals coming off of Zonisamide even though David was only on it for a few months. He is always so sensitive to medication changes.

David is now completely off of Zonisamide, on 200 mg at night of Xcopri, and we plan on reducing the remaining Depakote soon. So far, we have seen no negative side effects from Xcopri other than it seems to increase the potency of the other medications he’s on. For example, he’s grumpier in the morning (approx. 12 hours after he’s taken his medication) and more sensitive to potentially triggering upsets. However, I’m confident that after reducing Depakote (of course, after getting over the initial withdrawals), we will see that improve. This grumpier mood and heightened sensitivity seems to be more of a polypharmaceutical result than a direct response to Xcopri.

I’m always anxious when decreasing medication- I’m excited for the final result but nervous because I know how David gets when he experiences withdrawals. No child deserves to go through what he experiences, and our family doesn’t deserve it either. I’d love a future where clinicians see how important it is for medically complex children to have a safe space to experience these drug withdrawals, with trained medical staff who know and understand the difficulties medically complex families live with on a day-to-day basis. Our families shouldn’t have to go through this alone, completely unsupported.