I have really hesitated to say anything in case I jinx it... But Parker has been seizure free for 29 days!!!
This has been incredible and miraculous!!!! but also worrisome and disheartening because the side effects of these seizure drugs are so hard.
But mostly I am just so grateful for this sweet tender mercy.
I don't remember the last time I posted, but several weeks ago I had a devastating phone call with my neurologist that left me sobbing and probably the most hopeless I have ever felt. My sweet 10 year old daughter came over and gave me a hug, and then wrote me this:
Being BRAVE is not having no fears, but having the courage to face those fears.
We decided to start a new drug- Depakote. We did the normal drill of starting the drug, then increasing each week until the side effects were too bad, then going back down to see if there were any effects. Most drugs he's been on have increased his seizures and they improved only after we came down and off each drug. Depakote was weird. It at least had some effect. In some ways he was better, in some ways worse. Many of his clusters would only have 1 seizure, then others would be worse with even up to 28 seizures or spasms in a cluster. And so inconsistent. Usually he is consistent almost to the minute. See??? Weird.
I began researching more about a hemispherectomy and asked my Neuro if we could try Sabril, a medicine for infantile spasms. My plan was to rule it out before pursuing surgery. I really didn't want to start it because it has a box warning that it can cause permanent peripheral vision loss. But in the grand scheme of things, this risk is much less invasive than removing or disconnecting half the brain...
Anyway. Long story short. We started it Friday... And he was seizure free on Saturday! He has remained so for over 4 weeks. I still have trouble believing it. He went from averaging 8-10 clusters with a total of 20-50 seizures a day ... to zero.
Normally you start him on the lowest dose (5 ml) and move up 2.5ml until it works. He responded on the very lowest dose, but was also super tired, lethargic and even flaccid so we brought it down 0.5 ml after a week to 4.5 ml. And down again the next week. And again. And again. He is now on only 3 ml.
At this dose he is seizure free and not nearly as sedated. He is still not walking in his gait trainer like he used to, but he rolled over in his crib this week, and he noticed and pulled at a poopy diaper for the first time since his accident. He also is grabbing my food and reaching for toys. I can finally say he is officially sitting. I can now set him on carpet surrounded by toys and walk away for a few minutes!!! With minimal support he can both pull to a stand and sit back down into my lap. He can stand with me only holding onto the back of his pants.
He eats extremely well and is getting pretty good with a spoon in his left hand. He still doesn't drink but I am going to be able to focus on this and other things now that the seizures are under control for the moment.
I was gone this week and he said "mama!" He signs "go" consistently and "more". He is happy and engaged and I am so grateful.
Oh. And we're moving this week... to Minneapolis.
