As I have mentioned previously, the ACTH therapy did not work for Elisabeth. This was a bit of a blow since there was an 80% success rate. Her neurologist wanted to see her again immediately to discuss our next treatment plan, so we traveled to Spokane on Tuesday.
After a bit of discussion we decided to start Elisabeth on a medication called Zonisamide. Zonisamide has not been studied much and is only believed to stop the spasms 30% of the time. It's not a very encouraging number, but it's worth a try. The other option we discussed is something called Topimax. Topimax has more severe side effects than the Zonisamide and a 43% chance of reducing (not stopping) the seizures. Also, Topimax has a 30% chance of making the seizures worse. As you can see, we want to postpone that medication until there are no other options available.
Right before I left, the neurologist handed me a stack of papers that he had copied. It was a current review by Dr. Donald Shields, who is known for his knowledge of infantile spasms. I took the time to glance through it before I started on my drive home. There were a few lines that Elisabeth's doctor had highlighted. It said this:
"Infantile spasms is associated with a significant risk of mortality and morbidity. Nearly one third of patients die, many in the first 3 years of life."
I cried the whole way home. This was way scarier than the 1 in 20 number that I had read on the Internet a few weeks back. And the fact that Elisabeth didn't respond to the most successful treatment available (ACTH) makes her odds of survival much, much smaller.
I am trying not to let my worries get ahead of me. We are just starting the new treatment, and while it does not have a high success rate, I will not give up on it just yet. Elisabeth has changed my life in a most beautiful way. She inspires me to be a better person. She encourages me to be brave. She helps me identify the simplest joys in life. Elisabeth is the truest meaning of the word blessing. I will continue to cherish my time with Elisabeth, each and every moment. Families are forever.
