EEG's are stressful for Ethan. He is sleep deprived, to start with, and then he is held down so that more than 20 electrodes are attached to his head. Then we have to try to make him sleep and not allow him to pull the electrodes off of his head. Ethan gets extremely agitated because he is being held down and people are touching him. After that, he is pretty exhausted from fighting and typically is able to eventually rest for the test. It is preferable for an individual to be asleep during the test, although it isn't required.
Thursday's EEG started out well, all things considered. Ethan got hooked up and pretty quickly after that was able to settle down and sleep. Jeff has been able to accompany us to the EEG's and he curls up with Ethan so that Ethan feels safe and will go to sleep. More than half way through the test Ethan began having seizures. They were lasting anywhere from 10 to 20 seconds each and began to cluster, one after another. At five minutes we gave him his rescue medication, diazepam, and although it took several minutes for the seizures to stop, they did. During this time the EEG technicians were still recording/monitoring because it allowed them to "see" that the seizures were stopping. The diazepam makes Ethan very sleepy, and so as began to really kick in the electrodes were taken off and Jeff and I comforted him while we discussed whether we needed to head down to the ER or if we'd be okay at home. Ultimately, we decided to go home since Ethan was sleeping and the seizures had stopped. We did ask the EEG technicians to go ahead and call the neurologist who would be reading the EEG and have them contact us if they felt that we needed to come back to the ER.
So, we came home and Ethan was resting, taking a nap, so we felt comfortable enough for Jeff to head to work. Sadly, Jeff wasn't at work long before I called him to let him know that I had received a phone call from the nurse at the neurologist's office and that he had read the EEG and wanted Ethan to be admitted to the hospital for further observation with the hope that something could be figured out to help get the seizures back under control. Thankfully, because Ethan was doing okay at home, we were told that unless something changed that we could stay at home until someone from admitting called to let us know that there was a room available on the pediatric floor for him. This allowed us to not only take the time needed to pack and prepare but also eliminated the need for us spend hours in the ER. Several hours later the three of us were up at the hospital, and although it still took nearly an hour of waiting before we were settled into our room, I was so thankful that we didn't have to go through the ER to be admitted.
Soon after we arrived the nurses and the residents touched base with us and let us know that there wasn't going to be a lot done except having Ethan being observed. We spoke at length with the resident about why we were even being admitted if nothing was going to be done, but ultimately it came down to the fact that if we stayed that we'd get to see the neurologist in the morning, so we stayed.
On Friday morning we saw the neurologist, Dr. S. There is a huge shortage of pediatric neurologists nationwide, but specifically in IL, especially in our area of the state. Our local children's hospital has had a lot of trouble staffing the neurology department and we have been trying to get a neurologist here since we moved in July 2014. One way that they are doing this is by "contracting" neurologists, so Dr. S., comes to our children's hospital one week a month, during which he not only sees children who are hospitalized but will also see a limited amount of patients in clinic (for regularly scheduled appointments). Jeff and I both liked Dr. S., who admitted that although he had seen two other children with PBD-ZSD in the past, Ethan is the oldest and most "mildly" affected that he had ever seen and that he was surprised to see Ethan doing so well. Dr. S. spent a long time with Ethan and us, and told us that he would do a bit more reading and would comeback in the afternoon with a game plan. He was also very open to contacting the PBD-ZSD specialists, which is very important to me, because not only have many of the top PBD-ZSD specialists in North America seen Ethan in clinic during the GFPD conferences, but it also lets us know that he is a team player.
After Dr. S. returned in the afternoon it was decided that we would start slowly decreasing Onfi, increase Topamax, keep Keppra the same (this was recently increased), and begin introducing Phenobarbital. We also have an appointment to see him in 4 weeks and we will be admitted to the hospital for a 24 hour EEG earlier in the same week as the appointment so that he can see how the new medication regiment is working. We have a detailed decreasing Onfi and increasing Phenobarbital schedule that we will be following between now and then. While Dr. S. is only in our area for one week each month he is available by phone and email. There is also a nurse practitioner, who has extensive experience in neurology, who will meet with us during our upcoming appointment who will also be a part of Ethan's care team.
By the time we arrived home last night we basically bathed Ethan, feed him, and then it was bedtime. We were all exhausted. Being in the hospital, for even one night, is draining, and then was an "easy" stay because Ethan didn't have an IV and wasn't hooked up to anything. Although, we hadn't expected to start Christmas break off this way, since Ethan was supposed to go back to school on Thursday after the EEG and then have outpatient PT that afternoon, and Friday he was going to have an orthopedic appointment in the morning before going to school for the last day of school for the year, it is what it is.
Ethan was really tired today. The changes in the medications seem to really impact his energy level, and we are hoping and praying that over the next two weeks while he is on Christmas break his little body will begin to adjust and he will be less sleepy. We want to (and need to) stop the seizures, but we also don't want Ethan to be drugged up all the time. I want to see my little boy's smile and personality and there is always a fear that the drugs that are designed to control the seizures could steal his smile and personality away from us in the process. We do not want that to happen.
- Wisdom for the medical professionals to prescribe the right medications and doses of those medications so that Ethan's seizures will be controlled and he will have the least amount of side effects possible.
- An end to the seizures and that Ethan (and us) would never have to deal with them again.
- Effective treatment options and ultimately a cure for PBD-ZSD in Ethan's lifetime, that would be available in time to help us give Ethan a better quality of life.
- Wisdom, guidance, patience and strength for Jeff and I as we join in the decision making process in regards to how we treat the seizures and manage the possible side effects.
- Strength and energy for Ethan as his body adapts and that he will be able to continue to learn and make progress in his own way.
- Peace and joy during the Christmas season, as it is extremely difficult to get into the Christmas spirit while things seem so uncertain and our energy is spent elsewhere.
- For hearts and lives to be transformed by the gifts of love and grace of Jesus Christ.