November 4, 2016

Good News, Bad News

Last Thursday we made the trek to Iowa City to see Ethan's epileptologist. We are very thankful that Dr. Ciliberto is part of Ethan's team. Not only is he a wonderful doctor who seems to truly love working with kids, his undergraduate degree is from the University of Illinois, Jeff's alma mater.


Dr. Ciliberto was excited to see how well Ethan is doing and how alert he is no that he is no longer on phenobarbital. In terms of seizure control it has been a really good summer and fall for Ethan, since we added Charlotte's Web hemp oil to his regimen, got off of Banzel, and got off of phenobarbital. It is like our little boy woke up again. Which of course makes sense since some of most common side effects of phenobarbital are: sleepiness or fatigue, depression, dizziness, upset stomach, memory problems, and trouble paying attention.

Since Ethan has been doing so wonderful, we talked with Dr. Ciliberto about the possibility of weaning Ethan off of Topamax as well to see if there would be even more improvement in Ethan's alertness, activity level and overall well being. Common symptoms of topamax include fatigue or drowsiness, difficulty with concentration, confusion, dizziness, unsteadiness, nervousness, depression, difficulty with memory and loss of appetite. The doctor was completely on board with giving it a try and provided us with a schedule to slowly wean Ethan off of topamax over the next months.

So, last Friday morning we began the wean. Instead of the regular morning dose of 100 mg, Ethan received only 75 mg. Unfortunately, late that afternoon after school, Ethan had a small seizure. His first one in months! Obviously, we were disappointed and discouraged. So, we increased the Charlotte's Web dose, by a drop morning and night, and stopped the wean over the weekend. We started again on Monday morning and sadly Tuesday evening Ethan had two short seizures. I called Dr. Ciliberto's office on Wednesday morning and spoke with the nurse. We decided to keep the wean dose until we heard back from the doctor. Yesterday the nurse called back and the doctor ordered for us to stop the wean, return to the normal dose, and that we could try to restart the weaning process in a month if there were no more seizures after returning to the regular higher dose.

I'm trying to not be to disheartened but it is hard. Perhaps Ethan will always be on multiple antiseizure medications. He in on topamax and keppra as well as Charlotte's Web hemp oil. Maybe I was just getting too caught up in how successful the Charlotte's Web has been and was just hoping and praying that we could wean him off of all the antiseizure medications and keep the seizures in check simply with Charlotte's Web.

It is hard to believe that is was around this time last year that Ethan's seizures came back and started an 8 to 9 month period of constant uncontrollable seizures, multiple hospitalizations, ambulance rides from school, administering emergency medication at the drop of a hat --- even upon our arrival at the Tee It Up for GFPD pre-event reception in May, and fearing that a seizure would be the cause of my son's death.

This morning on the way to Ethan's school on of my "theme songs" was on the radio, Lauren Daigle's "Trust in You." While I will readily admit that my daily walk with the Lord is far from where it should be, and that my witness for Him is something that is probably pretty dismal, at best most days, this song is an anthem that rings true deep in my heart and soul. I'm a mess, but I'm His mess. I fail Him every single day in so many ways, but I do truly trust that God still loves me. He still loves my son even more than I can even imagine and that ultimately I can trust Him.


Another favorite theme song of mine is Casting Crown's "Praise You in This Storm."



Honestly, I don't always do a very good job of praising the Lord through the storms, but I desperately want to. Over the last six plus years the storm of PBD has continued to rage around us. As we have grown close to others in this storm it has become easier to cope but the strength of the storm has in some ways, intensified as we see people who we have come to love and consider family lose a child and know that without a miracle -- spiritual and/or medical in nature, that one day we too will experience that same loss and grief. Ethan is just a few months short of being the same age that one especially dear friend's daughter was when she was healed forever, by the Great Physician. This is never too far from my mind, and I don't know if my friend knows this or not, but seeing her praise Him still, is something that gives me hope. I am thankful to have this friend and so many others in my life who have continued to praise Him in the aftermath of losing a child to this horrible disease. I still may hate PBD-ZSD, but I love my GFPD family.

Prayer Requests
Please pray that:

  • I would seek to praise the Lord in the many storms that we are facing, more than I complain about them.
  • Ethan will remain seizure free and for his overall health. I haven't stopped praying for a miracle that will improve the quality of life of my son, and I hope that you won't either.
  • The scientists, researchers, physicians, studying PBD-ZSD would continue to have the wisdom and the tools needed to make discoveries and breakthroughs that would improve the quality of life for individuals with PBD-ZSD.
  • Family members, friends, and acquaintances who do not yet have a relationship with Christ would have soft hearts and minds and would come to know Jesus as their personal Lord and Savior. 


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