I took Will to the neurologist today. He has had 4 seizures in less than 2 weeks. This is a lot for him. Though they all happen around sleep time, they have not all occurred as Will is transitioning from being awake to going to sleep. Two of them occurred upon waking, just like the seizure he had at Johns Hopkins. Clearly these medications are not working, and the month of being seizure-free after we left the EMU was a fluke.
What I am learning as I deal with more neurologists is that neurology is completely inaccurate. Two people might be the exact same age and size and have the exact same seizure type, but the same drugs don't work on both of them. The most important tool a neurologist has is a list of drugs that work on your type of seizure, and a method for selecting the next drug to try. Then its just a matter of time to see if the drug is effective.
This inaccuracy used to frustrate me, because I wanted the doctor to tell me which drug would stop Will's seizures. Now that I know what I know, with a little neuro drug research and comprehension of my own, I am an active member of the "next step" decision-making team. The neurology resident in the room with us today actually thought I worked in the medical field.
When I explained to Will's neurologist about his increased seizure activity, he agreed immediately that we needed to make some changes. He started writing a list of epilepsy medicines on a pad of paper. Unlike previous meetings when the list has been 10 drugs long, today's list of "next drugs to try" was just 4 long. Will is already taking Carbatrol and Lamictal - and it is not safe to just stop one of those drugs to give him another. We need to wean him off of one of the drugs slowly, so whatever drug we added today could not have any negative interactions with these drugs.
We started going through the list of 4 drugs. Depakote, phenobarbital, Felbatol and Vimpat. So many drug names to remember, it is dizzying at times.
Though a good drug, we had to rule out Depakote. One of the side effects of Depakote is increased appetite and almost every kid that gets put on it gains weight. If you know Will's weight history, this would seem like a good thing, right? Ha. Here's the ironic part. Will's CP doctor told me the other day that Will is on the verge of being too heavy.
Sorry, please repeat that? I must have misheard you. TOO HEAVY? According to the doctor, the ideal weight and height for children with limited mobility is somewhere in the 10th percentile. They picked this number because the child is still healthy, but lighter and easier for a caregiver to lift and maneuver. I can't decide if I have a moral problem with this. I get it from a logical perspective, but how on Earth are you going to have an effect on your child's height??
Before I digress any further, we ruled Depakote out because we didn't want to make Will any heavier.
Phenobarbital is a very old drug. It was released for seizure control in 1917! The doctors still have no idea how it controls seizures, they just know that it works. While we were talking about phenobarbital, I told the doctor that I thought it might be a good idea to pick a third drug that acts on the body in a different way than the 2 drugs he is on (those drugs aren't working, maybe Will needs a drug that acts differently on the body). He agreed. And then we knocked phenobarbital off the list because of what they do know of the drug, they know it acts in a very similar way to the Carbatrol.
Then we got to Felbatol. Will's neurologist told me that this drug is probably the most effective drug on the market at controlling the broadest range of seizures. I had to ask the dumb question: so... um... why haven't we tried it then?
Well, because of the side effects. Within the first year of the drug coming on the market, people who were taking the drug started to develop permanent bone marrow and liver problems. 4 children died. Over the next couple of years, each of these instances of damage and death was determined to be caused by something other than the Felbatol. But the damage had been done. The drug is still used today, but to put people's minds at ease, you are required to get blood and liver function tests on a weekly basis for the first couple of months, then you move to one a month for the first year.
And you have to sign a "yes, I know this drug might kill me" waiver before the pharmacy will release it to you.
Umm... I am a logical person and all, but umm... NO THANK YOU. This is my 5 year old son we're talking about. Maybe if it was the last possible drug on the list and we had explored every single other possible option, I might... MIGHT consider it.
So that left us with Vimpat. The drug that Johns Hopkins indicated they were starting to see very positive pediatric partial onset seizure results from. It was approved by the FDA is 2007, so there is just about 5 years of side effect data on it. It isn't the most popular drug because of this... however the side effects that are noted are minor and comparable with some of the other drugs that Will is taking. And it acts in a completely different manner than Carbatrol or Lamactil.
Vimpat it is. This is, apparently, the manner in which most neurological drug and treatment decisions are made. Cross your fingers that Will tolerates it and it starts to control his seizures!!
We pick up the Vimpat from the pharmacy tomorrow. I brought up the fact that we needed a new Diastat prescription. I relayed the whole story from yesterday, and about how the current prescription is written in a way that limits the amount and frequency of Diastat we can get to stop Will's seizures.
"Well I can fix that," said Will's neurologist said with a smirk. "How obnoxious do you want me to be in this new prescription? One plunger per day?" For your mental picture, this is a 60 year old man who insists on wearing bowties, speaks in a very low voice, and has (by all accounts) never exhibited a sense of humor before today.
Awesome. And while we agreed that one plunger of Diastat per day could be considered by some to be a BIT of overkill, he wrote a prescription for enough Diastat that we won't ever be in yesterday's position again. Ever.