Reagan has been on Zonisamide since May, slowly increasing the dose, 2 weeks at a time, for 12 weeks, to reach her current dose.
She has been on Onfi since August 2016, slowly increasing the dose, 2 weeks at a time, for 10 weeks, to reach her current dose.
Every time we increase a dose, there are side effects. She is lethargic, sensitive, and moody. There are some days where just looking at her will make her cry. She isn’t herself for those handful of days following an increase. She is withdrawn, indifferent, and somewhere that is without sunshine and her usual happy spark.
Every two weeks I call with an update to the Epileptologist. The medications aren’t working. She is still having seizures. While she had one of her best days on these medications, she has had many, many horrible, hard days. Days where she has over 20 seizures in the hours she is awake. Days where she is so tired from the seizures that she doesn’t want to do anything but lounge around the house. Days where we stay home and cancel all of our plans just so she can rest in a quiet, calm space.
Since we have started down this path, she has only had one day without any seizures. Out of the 254 days since she was diagnosed, she has only had ONE day with no seizures. And yet, we keep upping her dosages.
I have to call the Epileptologist again with another two week update. She had 15 seizures on Saturday. The medications aren’t working, again. My biggest fear from this phone call is that we will get the same response, up the dose.
It is frustrating as a parent to know deep down that these medications aren’t working, but still have the experts say we need to increase them. I am not an Epileptologist, I don’t know if she reaches a specific dose if it will fix anything, I can only go off of what they tell me. I have been so hopeful with every increase in her medications, only to have everything come crashing down as soon as she has a seizure.
We are holding our breath for November 22, when we finally get to see the Ketogenic Neurologist. I have heard so many success stories about children on this diet, that I am trying, with whatever willpower I have left, not to put all of my eggs in this basket, but they’re already there. All of my eggs, all of Reagan’s eggs, and all of Blake’s eggs.
The best way to recover from a rough day of seizures? Hiding in forts and reading a good book.