We woke up early the morning after and packed into the car, heading down to see our personal rockstar, Dr Miller. Got Cole all hooked up.
When we finally got settled in our room, all Cole cared about was the electronics and the magic keyboard. Are you surprised?
These people could not fathom that we were not giving him heavy drugs to stop the small seizures. Eventually, I asked for something, they didn't get it fast enough and so I went to my own stash...I got in trouble again. Seriously, they wanted to give him 10mg of Diastat for myoclonics. I finally got them to compromise at 5mg. I appreciate doctors and modern medicine, but more is not more when it comes to drugs. Why use 10, when 2.5 will work? Every time we use benzo's, there are side effects. I know Cole well enough to realize that little seizures, just need little drugs. Big seizures need big drugs. Glad that I don't take it personally any more. I used to beat myself up after I would hear that we were doing things wrong, from doctors who had never met us or didn't even know our son. Now, I know that we know our son best. What works for us, is what we are going to do. Thank goodness Dr Miller is on board with this. Eventually we got an EEG that looked like he was drunk, since he had the Diastat.
They really should make pediatric hospital beds, bigger...since the majority of the time they have a parent in there with them.
SO-results are that Cole is having 200-400 small seizures a day. This is compared to 70-100 a day last year, when we thought things were bad. Oh, Dravet...why do you have to keep proving to us that things can always get worse. It truly is laughable how nervous we have been along the way and now we look back on those days and laugh. Dravet has truly taught us the power of the human will and the strength that you can find in yourself when you feel like you have absolutely nothing left to give. I remember that trip we took in 2009 and how freaking scared we were to cross the Nevada desert, that something might happen. This was before drops, before photosensitivity, before temperature issues...before a lot of things. We look back on those few days and how absolutely precious they were. We spent an entire day at the beach and nothing happened. That little trip with just the three of us will never be possible again. We will attempt something like it, sure. But this time armed with oxygen, a bag of rescue meds, a cooling vest, FL-41 lenses and a seizure alert dog...and maybe we will stay for an hour.
I like to talk to Dr Miller about Plan A, Plan B and Plan C, since we know that most things don't work out for Cole. It is not being pessimistic, it is just being realistic. I want to know what the next step is, with his help. Right now, the first step was to increase Cole's Keppra. He has been on it a long time, when he misses a dose he has a seizure, so we know it is working. It is one of the safest anti-epileptic drugs on the market, not being broken down in the liver like most of the others. So, to make up for his height and weight change for the last year, we re-calculated his dose to be almost exactly what he was on previously, but took into account the changes his body has made. We found out in FL that Cole has grown two inches since December. I knew his feet, but wow-no wonder I keep finding clothes that fit yesterday don't fit today. Plan A-change the Keppra dose, with this we also changed it to three times a day, hoping to get rid of that early evening hump we have been having trouble with. So thankful for technology, that phone of mine reminds me every day at 2:00 that it is Keppra time. I have to pack a syringe that is pre-drawn into his lunch box if he is going to school.
Plan B-Add Bromide. Cole has failed Phenobarbitol, Depakote, Topamax and Clonazepam. He has 7 seizure types and is progressively getting worse. The doctors definitely classify him as complicated and intractable. So, Bromide is an "End of the road" drug that we are willing to give a shot. The only one really left is Stiripentol and we are not ready for that yet. We don't have the money.
Plan C-Look at something that we have tried in the past, with a different dose or combination. We really don't want to get to Plan C.
Here's to hoping that Plan A and B work out!