Thursday, August 25, 2011

The Rollercoaster Ride

Will loves to go down the slide!
Well, our last post reported 7 consecutive days seizure free...a miracle in and of itself.  Will actually made it 10 days without a seizure, then BAM. He had a short minor seizure, but it was a seizure and the party was over. For us, those 10 days felt like Christmas every day. We thought we FINALLY had it, and we were actually starting to imagine what our lives - Will's life - could be like without seizures.  We so badly wanted Ketogenic Diet to be Will's miracle, but now we are back on the emotional rollercoaster ride again.

Since those ten days, he has been in a backslide, and little Buster Beans is back to daily seizures.  He is still having less seizures than he did prior to the diet, but they are lasting longer.  This past weekend, he had a seizure that lasted 27 minutes.  Think of holding your child for 27 minutes while he just continues to seize and seize, and maybe you can imagine how heartbroken we felt.  We are trying anything and everything we can to get back to where we were before, to no avail.  They have even decreased Will's calories back down to only 900 per day so that he gets even less carbs, but we haven't seen any improvement.

Reluctantly, we gave Will his first dose of Depakote, another medication, last night.  We were very hesitant to do this, because even though he is still having regular seizures, Will has been so happy and alert since coming out of the medicine fog caused by some of the heavy hitting meds he was on just a short time ago.  Depakote carries with it a risk of liver problems, and increases the risk of kidney stones from the Ketogenic Diet, although it is a fairly mainstream antiepileptic medication and its side effects are much less than others we have tried.

Things definitely haven't been all bad.  A few weeks ago at one of Will's therapy sessions at the Clinic, Will showed interest in the therapist's iPad.  We borrowed Grammy and Grandpa's iPad to try it out with Will and we were amazed at how much interest he showed in it.  After 3 nights of working with him, our little Buster Beans was actually pointing at the screen with his index finger!  We have spent HOURS in therapy with Will trying to teach him to point, with little success.  Three nights of the iPad, and he was doing it!  Since then he has also started making a much wider range of sounds when he opens his mouth. We have definitely heard him say "ca ca" and "ki ca" every time that one of the iPad programs shows a cat. He is still a long way away from talking or even saying his first word, but for the first time, we are seeing evidence that he is capable of forming language.  This is very exciting for us!  Needless to say, we bought our own iPad, which was promptly dropped on the ground destroying it less than 2 days later.  Luckily, Apple has amazing customer service and gave us a new one with no questions asked!

Will's favorite place to climb
Will's neurologist estimates that the Depakote trial will take approximately two months, although we have learned that nothing in the course of his treatment moves at the anticipated pace.  This is the last medication that we are planning to try before resorting to brain surgery, which means that we could be proceeding to surgery as early as the end of this year or the beginning of next year.

We have decided make the trek to Baltimore to Johns Hopkins for yet another opinion prior to surgery.  Johns Hopkins is not only one of the top pediatric neurological centers in the world, but Johns Hopkins also pioneered the Ketogenic Diet.  They had a cancellation and we were able to get Will in for a consultation in early October...just in time for our 10th wedding anniversary. We are seriously considering sending a memo to the next neurological conference asking the best of them to please start practicing in the Caribbean or maybe even Hawaii.  Johns Hopkins is lining up appointments for Will for another EEG, a meeting with one of their top epileptologists and the head of their ketogenic diet center, as well as a meeting with the head of their neurosurgery department.  As you can imagine, Will has a pretty thick medical file at this point, so just coordinating getting all of his records sent out has been rather time consuming, but we are hoping this will give us peace of mind to know we are doing what is best for our little Buster Beans.