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Seizures, Seizures, Everywhere.....

On the morning of Wednesday, January 13th around 8a.m., we checked in at our local children's hospital for a previously scheduled 24 hr EEG. Since Jeff needed to be at work we arranged for Jeff's dad to come up the night before and stay with Ethan and I at the hospital for part of the day on Wednesday, and for my mom to come up and spend the rest of the day with us at the hospital, until Jeff could join us after he got off of work.

Since this was a previously scheduled EEG, I expected that things should go pretty smoothly, as far as being admitted to the pediatrics floor and getting the procedure started. Ethan has had EEGs in the past and it has never been pretty. He hates to be held down and having 26 electrodes attached to his head is not something he finds enjoyable (at all)! In the past the EEGs have lasted about an hour, and this time it was supposed to last 24 hrs!!!! We knew that this wasn't going to be pleasant. We knew that it was going to be rough. 

Unfortunately, there were lots of barriers to even get the procedure started, and all of us were getting rather irritated about the fact that due to miscommunications and possibly other things between multiple parties, the EEG didn't actually start until after 3p.m..

Ethan cried so much that by the time the tech was finishing attaching the electrodes/leads that he had worn himself completely out. 
Ethan's nap didn't last too long though and then he was up. 

For the most part Ethan did pretty good after he woke up. The wires were long enough that he could get out of the crib, a little, and we could roll everything over to the bathroom, etc. However, since another component of the test was video monitoring him, he did need to spend the majority of the time in the crib. 

Not long after Jeff arrived after his long day at work my mom left and headed back home. Ethan was extremely happy to see his dad, and everything was okay until it was time for Ethan to go to sleep. He was so tired, but the electrodes were a huge issue because when Ethan is tired he rubs his head, so not once but twice we got him almost asleep and then he would rub his head and try to pull off the electrodes. This meant that we had to intervene and then there would be real tears and he'd be worked up and wide awake again. Thankfully, the third time which was after 10p.m. Ethan was asleep for the night and Jeff headed home to sleep and I tried to settle down for the night at the hospital. 

Ethan slept through the night, but was pretty restless. I didn't get much sleep, partially because it is just hard to sleep when your child is in the hospital but also because I kept looking at the EEG monitor (which I have no clue how to read, but it was clear that the seizure activity was much worse while he was sleeping than I was aware of) and worrying and praying for my little boy. The nurses assured me that someone in EEG was monitoring Ethan's test remotely and would immediately contact the nurses if it looked like a seizure was potentially life-threatening so that his rescue medication could be administered. Obviously, we don't have this capability at home, so that made me worry even more.

In the morning we hung out for several more hours, saw the doctors on round and the neurologist checked in on us and said hello and that he'd see us on Friday for our scheduled appointment. After that we were able to start the process of getting discharged.

Ethan was so happy to have all of the electrodes/leads removed.

Ethan remembered the lights from our previous visits. He enjoyed being able to turn them on and off.

I'm ready to go!

Wake me when we get home!
Ethan was very happy to be home. The next morning (Friday) Ethan seemed tired, so I decided I would just keep him home, especially since we had our post EEG neurology appointment at 1pm. The appointment with the neurologist didn't go very well. We knew that the EEG was bad, but we didn't realize how bad it was. Basically, our little boy is having seizure activity almost nonstop, and by the time that we "see" one it is really bad. Also, some of his staring episodes are likely seizures as well, and we had assumed it was just a side effect of the medications he is taking. So, know we don't know when he is staring off and having a seizure or when he is just sort of zoned out. The neurologist also suspects that Ethan may have sleep apnea, which could be causing the seizures to be worse.

The game plan for now is to stay on the same medications and to explore the possible sleep apnea aspect. A sleep study has been scheduled, but isn't until near the end of March (first available) and we are trying to get in to see an ENT.

Prayer Requests

  • An end to the seizures --- that God will either miraculously take them away and/or that the doctors will have the wisdom to know what has to be done so that the seizures can once again be under control. 
  • Get an ENT appointment scheduled and see an ENT before the scheduled sleep study, because the sleep study is most likely going to be even worse than the EEG. We would like to know if Ethan's tonsils and adenoids might need removed, and if so wisdom about surgery.
  • Return of Ethan's balance and independent walking. Ethan is still walking, but because of the seizures and/or the anti-seizure medication he continues to be very unsteady. His walking now compared to what it was like in the fall before the seizure activity increase is dramatically different. 
  • Praise for Ethan's continued toileting success. Pray that he would improve in his ability to be able to communicate his need to go to the bathroom. He is beginning to take my hand and walk me to the the bathroom here at home -- sometimes he goes, sometime he doesn't, but it is a start.
  • Increase in communication. Ethan's communication skills are still very limited. This is frustrating for us as his parents and for him too. I'm sure he thinks that the adults around him are really dumb for not being able to understand him.
  • That all three of us would be able to remain relatively healthy this winter despite all of the illness that seems to be going around. I worry about this a lot because a regular illness can be extremely tough on Ethan and although he seems to really enjoy school, there are so many germs at school!
  • Praise for Jeff's job that has allowed me to stay home so that I can be available for Ethan's many doctor appointments, therapy appointments and when he is sick or having a bad seizure day. Pray that Jeff would be strengthened and have the wisdom and knowledge necessary to continue to do a good job at work.
  • Wisdom about adding to our family someday. The desire for additional children hasn't gone away. Ever since Ethan's diagnosis we have felt that if we were to have additional children that they would come to us through adoption. We have been licensed foster parents for nearly a year and we have not yet said yes to a placement, as there are lots of things to consider. Our desire is for a child under the age of 5, but we would prefer under the age of 3 and to be perfectly honest I would love to be able to adopt a child who we had cared for since they were an infant. So many children in this world experience trauma while they are still inside the womb and/or after they are born. My heart aches for them. In the recent month or so my heart strings have especially been pulled for the millions of orphans outside of the USA and although I haven't felt that international adoption is the way that we will build our family, I still find myself praying for forever homes for children everywhere.  My heart also aches that in order for us to add to our family by adoption that means that a child isn't able to be raised by it's birth family. This is a very humbling thing to think about and at times brings me to tears. Please pray that we would lean on God and that we would be patient as we wait and that we would be very aware of when we should say yes to a child and that hearts would be protected. 
  •  Pray for wisdom and clarity of understanding for the doctors and researchers who are studying PBD-ZSD and/or treating individuals with PBD-ZSD. Although there are many others who are working hard in labs in the US, Canada, and in Europe, if you'd like to pray for members of GFPD's Scientific Advisory Board by name, you can find them on our website. Pray that 2016 will be the year that breakthroughs will be made that will lead to life changing treatment options for those impacted by PBD-ZSD. Members of the GFPD's Scientific Advisory Board have dubbed this to be the "Year of the Peroxisome," and I pray that they are right. I was corresponding with one of the top PBD-ZSD specialists today and here are her exact words to me, "Thank you Pam, the ' Year of the Peroxisome’ is definitely unfolding in many exciting ways! Please tell Ethan- this is his year!" Even now it is hard to not be emotional about the possibility that this could be the year in which effective treatments that would improve Ethan's quality of life are discovered. 
  • Pray for the leadership of the GFPD. We are all volunteers and we are parents of children (living or who have passed) impacted by PBD-ZSD and it is our desire to serve and support families like ours and to help in furthering the research efforts through fundraising and grants to those that are studying PBD-ZSD. 
  • Pray for all the parents whose children have passed away from PBD-ZSD. Tonight as I talked on the phone with a dear friend whose child is in heaven, and shared with her through tears the email message above, my heart was breaking in the midst of the joy that perhaps the doctors and researchers are on the brink of something amazing, because it already too late for my friend's daughter and so many other children. PBD-ZSD is a complex disease, and I don't know if it is God's will that this will be the year in which discoveries will be made that will give Ethan and other children the chance of a better quality of live, but as optimistic as I am that something great is coming very soon, I am still hesitant because there is simply so many unknowns and saddened by how many children have not and will not survive long enough to benefit. We have been part of the Global Foundation for Peroxisomal Disorders for more than five years and so many of my friends have lost children to this devastating disease in that time. For a better understanding of how these losses affect me, please take a few minutes to read the post, "When a Child With Your Child's Disorder Passes Away." 
  • Salvation of friends and family who do not yet know the Lord. Pray that we would be faithful witnesses and that they would see our dependence on the Lord and that hearts would be opened and lives transformed by the power of God's grace and love.


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