I hate {abhor, deplore, despise, detest and loathe} seizures! (Part 2)

Shortly after Ethan woke up on Saturday, November 20th he began having seizures. He had three while he was sitting on the potty, right after waking up. At first I wasn't overly concerned because I knew that after he went to the bathroom I'd be feeding him and he would get his morning meds, so perhaps the seizures were simply because the previous night's medication had worn off. 

I took Ethan to the living room to play while I got everything ready for his breakfast, but within a minute or two Ethan began crying, which he rarely does unless there is a something wrong. I picked him up but couldn't soothe him and he was seizing again. I woke up Jeff and he tried to comfort Ethan while I finished getting everything ready so I could feed him and get him his medications. Ethan continued to cry, have a seizure, cry, have a seizure, etc. The seizures were coming in clusters. So, we got his breakfast in him, via his tube, and while we were feeding him we decided that we would needed to go to the ER after administering his rescue medication, diazepam.

The diazepam is administered rectally, which obviously Ethan didn't enjoy, but we were able to give it to him and it did calm him down and we were able to take turns holding and comforting him while the other got dressed and ready to head to the hospital. I was very thankfully that just a few days before a dear friend had shared about her daughter's reaction to the medication, so that I knew what to expect. In the few minutes it took us to get ready and load up the van, Ethan was asleep. 

Thankfully, even with the snow that fell overnight and with what was continuing to come down steadily, the roads weren't too bad and we made good time to the hospital. Upon arrival to the ER, we were promptly seen and put into a room. Ethan's vitals checked, and although he was awake he was pretty drowsy due to the diazepam, everything was really stable and he was doing really well. One of the main concerns with diazepam, the nurse explained is that in some cases children's oxygen levels can drop, so it was important to monitor that. 

The nurses and in the ER were very kind, and the medical student who saw us remembered us from our visit to the ER the week before. It took a little while but eventually the doctor saw us and checked Ethan out and then went to call the neurologist who was on call. After he had consulted with the on call neurologist he returned to see us and he assured us that we had done the right thing --- get the regular meds in, administered the diazepam, and came to the hospital. He also said that now that we know that Ethan appeared to tolerate the diazepam well, that we wouldn't necessarily have to come to the hospital if we had to give it to him as long as we closely monitored him and he didn't start seizing again right after the effects of the medication wore off. 

There were no new recommendations, and we were told to continue with the schedule to slowly increase the Topamax over time until it we reached the goal dosage. So, about three hours after we arrived, we left with a prescription for a refill of the diazepam. Walgreens didn't have the diazepam so Jeff dropped Ethan and I off at home and then adventured back out into the weather in search of the medication. After several stops, a trip home, lunch, and a trip back to another pharmacy the diazepam was purchased and brought home. Jeff was on a mission, and I'm thankful that we were able to get it so that we knew that we would have it if we needed it again.

We stayed home from church yesterday and Ethan had four seizures that we know of, but they were short/brief ones. Today he had one this morning shortly after waking up and then another short one when I dropped him off at school. When I picked him up from school this afternoon the teacher reported that he had a great day and that besides the one seizure that happened when he first got to school they hadn't seen any during the school day, which was great. Ethan's teacher, the assistants, and all the staff have really handled this like champs and I am so thankful that the majority of them have had at least some experience with children with complex needs like Ethan. Also, because the nurses who oversee the children like Ethan in the building are well versed and ready to handle seizures and other situations that may arise; it makes me feel more comfortable about leaving him at school since I know that he is being properly cared for and that I can trust them to call me if there is a problem. 

So, what do we do now? 
  • We continue Ethan's daily medication regimen which includes: hydrocortisone (for adrenal insufficiency), Prevacid (for reflux), vitamin K (to help with proper blood clotting), Keppra (for the seizures), Onfi (for the seizures), Topamax (for the seizures), a multivitamin, and DHA supplement. Over the next three weeks we will continue to gradually increase the Topamax to see if that will help bring the seizures under control. 
  • We keep loving our son and helping him be as happy and healthy as possible.
  • We keep praying and asking you to pray for us as we look for a solution to the seizures and for wisdom, courage, patience, and peace with not only this but all aspects of dealing with the effects of this horrific disease on Ethan and our family.
  • We keep praying for medical/scientific breakthroughs that will lead to effective treatment options for PBD-ZSD. Ethan, and all the kids with PBD-ZSD need treatment options that will make a real difference in the quality of life for individuals with this disease. 
  • We keep spreading awareness and advocating for research in partnership with the Global Foundation for Peroxisomal Disorders


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