For someone who proclaims to loathe medication changes, I allow a surprising number of them.
|One of two containers we use for meds for the week|
Months before the clusters, the neurologist added Trileptal to Robert’s bucket of meds and after much trial and error with the dose finally settled on 150 mg in the morning and 300 mg in the evening. It is a very low dose but anything more than this makes Robert irritable, grumpy and unhappy.
Robert’s seizures continued to change over the past year with us seeing clusters of seizures every couple of weeks but days could by without any seizures. The seizure activity increased significantly throughout the winter and the neurologist suggested the seizures could be “seasonal.” In Robert’s case, much worse in the winter than in the spring and summer. This seemed to be the pattern over the last couple of years and with another winter coming, the steady increase in Robert’s ammonia level as well (from years of being on Depakote), we discussed another medication change.
|Robert before an early bedtime|
Robert and I usually see the physician’s assistant when we go for the quarterly check-ups. Julie is wonderful and smart and spends as much time with us as we need. I am satisfied that she consults with the neurologist about any changes in Robert’s health and care and, frankly, she’s much easier to talk to than Robert’s neurologist. (Robert actually has two neurologists: one for his epilepsy and one for the movement disorder. The Epileptologist is the one that is great but not as easy to talk to as the other.)
At Robert’s most recent appointment, Julie and I had a long discussion about the high ammonia levels and recent seizure activity. Robert slept through most of the meeting which caused Julie much concern. The sleepiness is caused from his ammonia level being way too high (it is over 100 and normal is under 30). Julie and I also talked about our concerns that winter is coming and the seizure activity is likely to increase.
Julie suggested a plan to decrease the Depakote and add a fairly newly FDA approved drug (Fycompa).
As much as I hated the thought of going through another medication change, I knew we had to try. The seizures last November alone numbered over a hundred – I do not want Robert (or us) to go through that again. Plus, the ammonia level really is way, way too high. Robert is already maxed out on Levocarnitine to help reduce that and we had a horrid experience with Lactulose so I won’t try that again. Reducing the Depakote is the remaining, logical answer.
Except Julie asked me an interesting question: of all the medications Robert is on, which one do I think provides the best seizure control? My answer: Depakote and Clonazepam.
Yep. This is going to be tricky.
After the appointment we had to wait a few weeks to get an approval for the Fycompa. Once that was authorized, we added a very low dose (2 mg) of Fycompa at bedtime and also decreased the morning dose of Depakote by half. After a week, we increased the Fycompa to 4 mg at bedtime, keeping the Depakote at the same lower dose.
It has been just over a week since starting the new medication regimen. We do see some side-effects of the new med such as sluggishness, being off-balance and an ever so slight uptick in irritability.
We also have seen an increase of seizures over the last week which just proves my theory that Depakote is one of the meds providing the best seizure control for him. We can’t have such high ammonia levels, however, so we are continuing with the new medication. I am hoping the Fycompa will “catch up” and get the seizures better under control, particularly since winter is coming (I realize I sound like Jon Snow).
|Taz attempts a selfie|
What I have realized about these medication changes is that while I don’t like them and they don’t always work out, they are not the center of our universe.
Robert still enjoys going to Day Program;
Richard still works on his water conservation efforts;
I still post silly pictures of my puppy (who is going on three!);
We all still participated in a caregiving study;
In other words, life goes on whether it is with new medications, seizures, mood swings or drowsiness.
I may loath the medication changes but I am willing to give them a try in order to give Robert a shot at reduced or (gasp!) zero seizures.
Yep. Hope always wins.