Right now, we are trying a medication called Topamax, which is an anti-seizure medication given orally. We "sprinkle" the capsules into some applesauce twice a day. We have increased his dose gradually, and yesterday he finally reached the target dose. Unfortunately, as was expected, we have noticed no improvement in his spasms Thus, we are trying to prepare ourselves for what lies ahead.
If we do not see any improvement in the spasms from the Topamax, Will is going to be admitted at the Clinic for a PET scan, 24 hour EEG study, and a spinal tap. At that time he will begin a hormone injection treatment called ACTH. After his initial hospitalization, Dan and I will have to give him daily injections of the ACTH, and he will need to have regular blood pressure checks, as well as blood and urine draws to make sure he is tolerating the medication. If it works, the Dr. estimated the course of treatment will be approximately 5 months, if it does not, he will be gradually weaned off over a period of about 2 months and we will be on to the next medication.
We are terrified of the ACTH, although we are somewhat terrified of just about everything to do with this right now. ACTH has some very bad side effects, including significant weight gain, suppressed immune system, and moodiness. His doctors are "not optimistic" that it will work, however, they said that we owe it to Will to try so that is what we are going to do.
We are having an extremely difficult time coping with all of this. As parents, it is devastating to us to know that there is something terribly wrong with our son and yet there is nothing that we can do to make it better. No amount of kisses will cure him, although I can assure you that he is getting plenty.
Saturday, February 19, 2011
Welcome to Will's blog. We decided to create this site because it has been getting difficult to send out emails to the many family and friends that want updates on Will's condition. He is a very loved little boy!
In early January, 2011, Will, who was almost 18 months old, began having strange episodes where he would nod his head forward every 10 seconds or so for a few minutes at a time. We talked with our pediatrician who asked if it could be a type of seizure. Seizure?, I thought. It couldn't be. This was only a slight nodding of the head, and he was completely conscious the entire time.
We began a series of tests, including an MRI and various blood and urine tests, all of which showed nothing out of the ordinary. Still, the episodes continued, lasting anywhere from 2-10 minutes, typically around 5 per day.
|Buster at his EEG|
On February 9, we met with the head of Pediatric Neurology at the Clinic, following an EEG. We showed her a home video of one of Will's episodes, and she instantly recognized it as Infantile Spasms, a rare type of pediatric epilepsy. They were indeed a type of seizure, one that can have very devastating results for a child's development.
With the results of the EEG to direct her, she re-reviewed Will's MRI and found a subtle malformation in the left temporoccipital lobe of his brain. We were told that Will's condition was very serious, and the likelihood of him needing brain surgery in the near future is "significant". This explained why he still wasn't talking yet, and is what they believe to be the cause of his seizures.
As we sat in the doctor's office listening to his diagnosis, we were overcome with the shock of what she was saying. We couldn't find the words to ask questions or even speak, our minds went blank. And so began our journey with our precious little boy to battle this disease...