November 20, 2016

Sick. Seizures. Sick of Seizures.

Ethan's continuing to fight the "bug" that has been plaguing him for more than a week now. The cough isn't going away, and I'll be calling the doctor tomorrow.

Yesterday, I had to use Ethan's rescue medication in the first time since May. While the seizures have returned over the last couple of weeks, we weren't seeing them every day and they hadn't started to cluster until yesterday afternoon. I am thankful that the diastat stopped them, but I hate that I had to use it. The diastat really kicked his butt yesterday and he slept for more than 4 hours. It finally got late enough that we had to wake him, which was hard because he was so groggy, but eventually he woke up.

Although we were concerned that Ethan might be up all night, he wasn't and slept really well until around 5:30am, which isn't bad considering that since the time change he has been consistently waking up between 5:00 and 5:30am. Ethan and I stayed home from church this morning and sent Jeff and the girls as our representatives. Ethan's been napping for a while. This bug, whatever it is really needs to go away!


November 14, 2016

Seizures are back. Operation Christmas Child. Sick Kids. Friends Hospitalized.

Ethan's been back on the full dose of Topamax for more than a week. Unfortunately, the seizures are still breaking through. I called the Epileptologist's office on Friday, and he instructed us to increase the Charlotte's Web from 9 drops twice a day to 12 drops twice a day for a week to see if that would help. If they are still breaking through we are then to increase the Charlotte's Web to 15 drops twice a day. Friday evening we began the increased dose. So, we'll know wait and see what happens. Friday we witnessed 4 seizures, Saturday we saw 2, and Sunday we have seen 2. Thankfully, they are all relatively short, just 5 to 10 seconds each, and so far they have not clustered, but it's still awful. I hate seizures.

"Big sister" saw one Sunday, while we were all at the table for lunch, and was surprisingly calm about it. Sometimes it is hard to believe that she has only been in our home since June. She has become a tiny little advocate and ambassador for Ethan. Yesterday, she introduced Ethan to Children's Church when he and his helper went in there so Ethan could listen to the music. In her own way she seems to understand that Ethan is special and different than everyone else, but you can still tell that she wishes he wasn't. Yesterday afternoon she asked me if Ethan would have a job when he grows up. I told her probably not and that he'd probably always live with us. I asked if that would be okay, she said yes. "Little sister" doesn't seem to notice or care. Sometimes she's really gentle with Ethan, other times she is rough -- or otherwise, being a pretty typical sibling! Mostly, she's too busy being jealous anytime she isn't the center of attention. She is 2 after all.

On Saturday we ventured out as a family to shop for our Operation Christmas Child Shoeboxes. We have done these for several years, and have always done one for a child Ethan's age, so this year we put together one for each of the kids. "Little sister" was very upset that she didn't get to keep the dolls, but "big sister" seemed to understand that the items would be going to children somewhere in the world that needed them and that blessing others is one way that we can worship God. 

All three kiddos have been fighting some bug, but it seems to be on it's way out, or at least I hope so. We had a very long family visit to the pediatrician on Thursday afternoon and ruled out ear infections and strep throat. No one ran a temp, but everyone had coughs, sore throats, drainage, and snot. Energy levels seem back to normal so "big sister" is headed to school today, but Ethan's staying at home with me and "little sister." His cough is still pretty nasty and he woke up with diarrhea.

This past week was a tough week for so many of our friends. Several of Ethan's PBD-ZSD buddies have been in the hospital, thankfully at least one if not two of them have made it home already. Our friends who recently returned home from China with their newest addition have also spent almost every day since their return in the hospital with their little one. You can follow their story here. As the fall fades and the winter begins it is likely that both our family and so many others will face more times of illness. The winter months are hard on everyone, especially children and adults with compromised immune systems.

My heart has been heavy all week. We've been battling Ethan's seizures, the kids have been sick, the election didn't turn out how we thought it would, so many of our friends' children are having health issues, and there are some import upcoming dates related to the girls. Prayer is greatly appreciated. 


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.