Yeah, so it has been awhile. I would like to say that it was just the chaos of the holidays that held me back from posting…but really it has been more than that.
I think I have been spinning my tires. We have been in somewhat of a holding pattern here.
Esmé’s seizures have been somewhat at bay. We had made it 37 days without a seizure on a cocktail of Onfi and Zonegran–only to find out that the Zonegran was contributing to kidney stones. Since taking her off the Zonegran we have seen clustering every two weeks or so with a handful of obvious seizures.
So, we started a new drug, Lacosamide, and low and behold, she started to react to the Lacosamide as well. This reaction was pretty similar to what we saw with both Keppra and Dilantin. We suspected it was the Lacosamide, but we had to increase her dose first to verify because we can’t afford not to be sure before removing an anti-convulsant from our rotation. She became very irritable, lethargic but unable to sleep much. She experienced tremors. She would sleep for a few minutes and awaken wincing and crying. And she has been retching and vomiting frequently.
For those of you keeping track at home, this makes reactions to four medications, add to that the one drug that never did anything for her, good or bad, the one that she used so much it became ineffective, and the “cousin” medications to all of these drugs and we have nine medications on the no-go list. In addition to that, at this point we are essentially paralyzed with the fear of trying any new medications…she reacts more than not, clearly, and, so far, while these reactions have been awful, we have caught them early and been able to avoid life-threatening reactions.
Meanwhile her nissen (that surgery that was done to prevent reflux) has slipped, creating a para-esophageal hernia above the nissen and her stomach. It has been like this for a long time and we had been maintaining ok. However, we think that with the recent retching has worsened the situation. There is now a protrusion at her sterum when she retches. It is about the size of a quarter. The thought is that it is soft tissue damage and that, together with the slipped nissen/hernia, we now need to address this area surgically again.
Anyway, that is all a lot of somewhat mundane updating…but I guess it helps me to explain the mindset I am in: There is just too much to process. And every time over the last few weeks that I have sat down and started a post (trust me there a many embryonic posts in my account living in suspended animation) it all seemed to big and too little at the same time. I could not find the right place to start, nor see the end. It’s not writer’s block so much as life block, in a way. Because I guess I don’t see the end of any of this either. I don’t feel like addressing Esmé’s nissen with surgery will end our problems with retching–or even be the last surgery she needs for the same thing. I don’t feel naïve enough to hope that the next anti-convulsant in the list has any hope of being “the one” for her.
And as I enter yet another semester of leave from my doctorate, I don’t see how it is even possible for me to finish this project that two years ago seemed so exciting and interesting to me…and, in many ways, now feels like a pile of self-satisfied bullshit that is still guiltily interesting to me–if I could only think about it for longer than 30 seconds at a time.
Don’t get me wrong, I am far from losing hope. My daughter’s ability to play and laugh and smile in the midst of discomfort, her amazing capacity to make strides no one thought were possible for her, and her interest in the world–as well as the tremendous devotion she inspires in others–pulls me through. We have gotten Ez to the best doctors, arguably in the world, for her condition. We have every reasonable medical option available to us…We are so very fortunate.
In ways, I am more optimistic than ever–I just don’t know where we go from here.