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I hate {abhor, deplore, despise, detest and loathe} seizures! (Part 1)

Seizures, seizures, seizures! Our lives have started to revolve around these horrific episodes. Not all children with PBD-ZSD develop seizures, and for almost three years we thought Ethan might be one of those kids, but unfortunately shortly before his third birthday he began having them. We had to find the right medication and steroid balance, which took a little bit, but in reality it didn't take that long and then they were under control. Thankfully, this remained true for over two years. However, a couple of months ago they decided they were going to return and return with a vengeance. 

A few months ago when the seizures first began breaking through the neurologist had us begin to increase his dose of Keppra while we waited to get an appointment with her. There is a huge shortage of pediatric neurologists in downstate (outside of Chicago) Illinois, put that is a rant for another time. So, we increased the Keppra, but the seizures continued to breakthrough, so the neurologist then prescribed Onfi. We had a lot of reservations about Onfi and the potential side effects, and while our neurologist listened to our concerns she was still adamant that she wanted him to try it.  

Within a few days adding Onfi his balance was affected and it has remained so, although he's been on it know for about two months. The Onfi has not taken the seizures away, and when we finally got in to see the neurologist on  November 3rd she made a several week plan for increasing the dose of Onfi to see if a higher dose was needed to be effective. If the seizures continued once we reached the goal dose and/or the side effects worsened then we would start to wean off Onfi and we would try something else. There are a lot of different anti-seizure drugs and finding the one or the combination of medications that will help control the seizures is in many ways trial and error.

So, on Tuesday, November 3rd we left the neurologists office with a plan and the hopes that in a couple of weeks we would either see the seizures lessen and hopefully disappear all therefore and if not then we would move on to looking at other medications. However, just one week later on Tuesday, November 10th I got my first call from school regarding seizures that were enough of a concern to the teacher and nurse that I went and got him from school. Of course, this also happened to be a day that neither our pediatrician or our neurologist were in their offices. So, after talking to nurses at both offices we went to prompt care to have Ethan checked out, just to make sure there wasn't anything else going on such as an infection that was lowering would explain why the seizures were worse than normal. The doctor though that one of his ears looked red, so he might have an ear infection and he prescribed an antibiotic. So, we came home and started him on the antibiotic and all seemed to be fine. He was still having the little break through quick seizures, but nothing significant or lasting more than a couple of seconds.

Wednesday, November 11th was Veteran's Day so there was no school, which was okay since that would allow for Ethan to have two doses of antibiotics before returning to school on Thursday. Thursday was a good day, his teacher and other staff didn't see any seizures, which was great to hear. However, this happiness was short lived.

On Friday, November 13th I got a call from the school nurse around 2 pm that Ethan was once again having out of control seizures and so I headed to school to pick him up. By the time I go to the school they had gotten so bad that the nurse was ready to call 911. So, I held my sweet boy as she called for the ambulance. Ethan's teacher had to help me call Jeff, because I could hardly think straight as we got ready for the ambulance to arrive. Thankfully, it didn't take very long and by the time the paramedics arrived Ethan's seizures had stopped, but he was also very worn out. Ethan had one short/brief seizure in the ambulance on the ride to the hospital and we were admitted via the Emergency Room/Department. Jeff arrived shortly after we got there. We were still in the ER when Jeff's parents and sister arrived, who are a two hour drive away.

We spent almost 5 hours in the ER before we were admitted to the pediatric floor. This picture was taken early shortly after we arrived.  


 By the time we got upstairs to the pediatric floor it was past time to give Ethan his evening meds and feeding. Thankfully, although they put an IV in, they never hooked it up and so Ethan was free to still move around. Ethan finally went to bed and they did hook him up to the pulse ox so they could measure his oxygen levels, but other than that nothing was really accomplished that night as it wouldn't be until the next morning that we would see the neurologist.

Jeff's family headed to our house to sleep and we tried to settle in for the night -- which is never easy at the hospital. None of us slept well, and at one point in the night I asked the nurse to remove Ethan's pulse ox because he kept waking up, you could tell it was bothering him to have it attached to his toe. Thankfully, after it was removed Ethan slept better, even if his parents didn't.

Early the next morning Ethan enjoyed riding in the wagon and we checked out the playroom, but he wasn't very interested in hanging out there although he did find one toy he liked and we took it back to the room with us.


Sometime mid-morning we met the neurologist, who flies from Detroit, MI to our city in IL on the weekends to help cover the hospital (remember the shortage of pediatric neurologist that I mentioned)!!! The doctor seemed to be a very knowledgeable physician who freely admitted that he had never treated a child with PBD-ZSD and wanted to know if we knew of any particular anti-seizure medication that seemed to work with PBD-ZSD kids. Unfortunately, similar to other individuals with seizures, there isn't a one-size fits all anti-seizure medication that seems to help children with PBD-ZSD who have seizures. We spoke of the pros and cons of several medications, and also had a lengthy discussion about CBD oil and medical marijuana. After talking over the medication options we decided to add Topamax to the mix. Unfortunately, Topamax, like many other anti-seizure medications must be gradually increased, so it will take about four weeks to get up to a therapeutic level. We were also prescribed a "rescue" medication, diazepam, to be used in an emergency if he was having another uncontrollable cluster of seizures, like what had led to us coming to the hospital.

The doctor felt like we had a good plan in place, and that a referral would be made to the local pediatric neurologist with the hope that he would take Ethan (the doctor is brand new to the area and will be the only pediatric neurologist seeing patients in clinic so he is going to be swamped with referrals and therefore he is reviewing them carefully before accepting a patient --- remember that pediatric neurologist shortage I mentioned before) so we were free to go home. It still took a while before we were actually discharged, but we were thankful to be back home in the afternoon and that Jeff's parents and sister stayed and visited for several hours, giving Jeff and I a chance to rest and catch up on things around the house while played with Ethan.

To be continued....

Here's a few facts about seizures from the Epilepsy Foundation
  • 65 MILLION people around the world have epilepsy.
  • Over 2 MILLION people in the U.S. have epilepsy.
  • 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime.
  • Between 4 and 10 out of 1,000 people on earth live with active seizures at any one time.
  • There are 150,000 new cases of epilepsy in the U.S. each year.
  •  One-third of people with epilepsy live with uncontrollable seizures because not available treatment works for them.
  • 6 out of 10 people with epilepsy do not know the underlying reason/cause of their seizures.



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