In the last update I mentioned that we were waiting on an appointment with a new Neurologist from Duke. After getting unlucky and having our late August appointment canceled, we actually got lucky and scheduled one with a different doctor last Tuesday. Our first visit with Dr Mikati went well. He recognized what we were looking for and provided us with some options. We knew we wanted to do something more aggressive than the same old-same old seizure medicine merry go round. We’re just so sick of trialing drugs, with little improvement, each trial taking up to six months because of how poorly Maddie handles all the change. In order from least to most invasive/dangerous, we are considering 1) steroid pulse therapy, 2) VNS implantation surgery, and 3) Corpus Collosotomy (brain surgery to detach the 2 hemispheres of the brain by cutting the Corpus Collosum. There is also one more more untried AED, Felbamate, that we may trial somewhere in this process.
Of course, I don’t want to do any of these. They all sound terrible to me and I still can’t really believe that we are in this place. But onward we march. And I’m trying really hard to be optimistic. So tomorrow we’ll begin treatment option number one. Steroids. Brandon and I had promised each other that we’d never allow her to try a course of steroids again. They were just too awful. Of course, our first encounters with them were during leukemia treatment while hospitalized. And then she had lower dose monthly steroids during chemo during the maintenance phases. Even those low doses were awful. Then when seizures appeared, high dose Prednisolone is how we first tried to fight back. And that’s when Maddie wound up in the PICU due to sepsis. Then out of desperation, we tried a different high dose steroid (ACTH) to treat epilepsy a few months later. I had to go back and read the blog archives because in all honesty I think I’ve tried to wipe some of those darkest days from my memory. Revisiting it didn’t make me any more ready to face them again.
We are starting them tomorrow. We’ll have her admitted to Duke, hooked up to an EEG machine for monitoring, and then proceed to see how high of a dose we can get to (while monitoring her BP, blood sugar, all vitals, and behavior closely) before we see dose limiting side effects. If we can get to the target high dose and stay there for three days, that will be it and then we’ll repeat the same dose each month. The goal is to maximize dose but not use it over a prolonged period in order to prevent the more dangerous side effects of steroids. Once we see that she tolerates this dose, we will be able to administer the same doses at home over future months. But we want to monitor closely at first to see what she tolerates. It’s possible we’ll have to stay longer if she has a negative side effect or if she doesn’t tolerate the higher dose and we have to use a lower dose for more days. It’s hard to believe that this is our next best choice right now.
The combination of steroids and having her head covered in EEG leads for three days really feels like the worst thing ever. But I know it could be worse. She has responded somewhat positively to steroids in the past; they just never got her all the way seizure free. But we aren’t just aiming for seizure freedom anymore. We would be thrilled with a significant seizure reduction and the possibility of development. Because although our princess is super happy between seizing most days, the seizures take up a lot of the waking portions of her days. And her development is not moving forward significantly in any area, and hasn’t for some time. So here we go….please keep her in your prayers.
To end on a positive note, we had a great time at the beach over the 4th of July. We had so much fun and relaxation that I forgot to even pull out my camera, so sadly I have no great beach pics to share….but I’m sure we’ll go back soon. The week at the beach was made even more fantastic because my old running group, the Camp Lejeune Stroller Warriors, organized a race called Stroller Warriors – Have to Half in honor of Maddie. So on July 7th, in extreme heat and humidity, a great bunch of girls and myself ran a half marathon in honor of our sweet girl. Their fundraising effort jumpstarted my Marine Corps Marathon fundraising by over $1000! They are such an amazing, generous group of ladies and I miss terribly getting to run with them every week. So although it wasn’t my best run ever, it was an awesome day because I was surrounded by sweet friends showing their support. Aside from all of the women who ran it, we had over 10 ladies who volunteered their time early on a hot Saturday morning to come out and cheer for us and man water stations all over Camp Lejeune so that we didn’t have anyone overheat. It was a great day.
Thanks for checking in on us. I’ll let everyone know if the steroid treatment was worth it in a few days…..
Love to everyone,
Liz, Brandon, and Maddie