Parker's Promise

Saturday
I got home from UCLA with the good news and an hour later we packed up the car and headed off to our ward (church) campout.  We were in the car on our way when Dr. Hussain called. He told us that he went back through the EEG during the episodes, and even overnight and he found the hypsarrhythmia patterns, in addition to typical seizures.  He has Infantile Spasms.  It was so hard to hear the news that confirmed the infantile spasms (IS) after we had been cleared today, especially right before we were going to face many friends and ward members that had no idea what we had just found out.

He went through all the treatment options and the side effects of each.  Infantile spasms can be devastating, but they can also be cured.  He had us go down immediately on the Vimpat last night.  Already today his seizures have been better.  This morning he only had 4-5 "kicks" instead of 8-10.  This afternoon and evening he had several staring spells that were not followed by kicks at all. Tomorrow morning he will have his last dose of Vimpat.

Through out this whole year, I feel like we have been guided by God's hand.  We have known just enough to get us to the next step- nothing more. We know just enough to make the right decisions.  Looking back, I am so incredibly grateful we did not know the end from the beginning. I don't know if I could have handled knowing everything we were going to go through.  When Parker fell, I knew just enough to take him to the ER.  He had a seizure within a minute of falling and in my mind I knew Seizure=ER.  That seizure saved his life. We have learned SOOOOOO much this year, but it has been line upon line, precept upon precept.  Here a little, there a little.

Even as I look through the last 2 weeks- we've been prepared for this diagnosis and the drastic measures we may need to take.  I have been pouring through a book by Johns Hopkins about the Ketogenic Diet, a diet that is extremely high in fat and low in carb and protein.  The traditional diet is a 4:1 ratio fat:carb+protein.  It works to decrease or even sometimes stop seizures in over 50% that try it.  1 in 2.  I will take those odds.  It is particularly effective when medications fail.  Yep- that fits us, too. We have tried over 5 medications in 6 months, and at least 3 of them actually made the seizures worse.  The diet works because when the body does not have carbs, it burns fat and creates ketones.  Somehow, this causes the brain to stop seizing.  They don't know exactly WHY it works, but it has been proven over and over enough that insurance covers the formula as a viable treatment.  This website does a great job explaining things- way better than I can tonight.

Anyway, this book mentions over and over how effective this diet can be for infantile spasms- and other certain forms of epilepsy.  Week before last I was on an epilepsy facebook page and a mother mentioned that her son had infantile spasms.  I private messaged her and asked if she heard about the diet. She told me about the treatments they are using currently (ACTH) and their next choice (Vigabatrin) but these have serious side effects!.  Keto was their third choice.  I looked up the treatments and one had a video of a baby having infantile spasms.  I watched the video and it looked EXACTLY like Parker's seizures.  I just looked for that website now to link it and I can't find it anywhere, but yet it was there when I needed it.  Hmmmm. So many little tender mercies add up.  I was just reading this website and I did not realize how rare IS are.  Parker did not have the typical EEG pattern that 2/3 of IS have.  Dr. Hussain researches IS and may be the best possible person to diagnose or rule it out. Such a tender mercy that he is the one that read the EEG, he happened to come by our room just as we went back to check if we'd left anything, and Parker just happened to have a seizure while we were standing there talking and he went back to look at the EEG again.  Too many things fell exactly into place for this to be a coincidence.

I was talking to a sweet girl with autism in my ward today at the campout.  I don't remember exactly what we were talking about right that moment, but she said "God is looking out for us. He takes care of us. His hand is in everything."  Little does she know how this was exactly what I needed to hear today.