Megan and Anthony

Elaine Kiriakopoulos MD, MSc, director of health communications and engagement at the Epilepsy Foundation, spoke with Megan about her son Anthony, their family's life with epilepsy, and their epilepsy surgery story.

Please share with us a little bit about you and your family.

I wouldn't be in this field of work if it weren't for my son Anthony's epilepsy. I have been part of the team at the Epilepsy Foundation of Iowa for almost 2 years now. The work and the mission of the Foundation to END EPILEPSY® has become my passion.

I have 2 children, Anthony and Lacie. We adopted Lacie 5 years ago. She is now 10 years old. Anthony is my only biological child. He is 14 years old. He was born 11 weeks premature due to eclampsia. He came into this world via emergency C-section after I had my third seizure in less than 4 hours and I had stopped breathing and suffered a stroke. I myself do not have epilepsy. My seizures were all due to the pregnancy complications, but I felt then and feel now like it was very strong foreshadowing.

How did Anthony and your family's epilepsy journey begin?

Anthony as a little kid
 

At birth, Anthony had a grade 3 and grade 4 bleed, one on each side of the brain. He was in the hospital for 6 weeks then discharged when he finally got up to 5 pounds. Not once did anyone mention the possibility of seizures.

Anthony wasn't developing normally. His motor skills were slow. He wasn't hitting milestones even when adjusted for prematurity, and he had some major eye muscle issues that caused one eye to pull to the center. We were always at the doctor. One day, a few weeks before his first birthday, I noticed he kept twitching. His arms, legs, and head would all pull back and forward quickly, just one time then he was fine. Sometimes he would do it again a few seconds later, and sometimes he wouldn't.

I felt like something was wrong so we took him to the ER. The neurologist came into the room and explained to me that a baby has a startle reflex and that was what I was seeing. I didn't argue. A neurologist is an expert at this stuff, right? The doctor left the room and the nurse came back in. I was a scared, 20-year-old new mom and I didn't want to make the brain doctor mad, but Anthony started jerking his arms, legs and head again for no reason. So I said to the nurse in the room, "This isn't just a startle reflex."

She ran and got the doctor to come back so he could see what was happening. It was then that Anthony received a diagnosis of infantile spasms. We ended up staying under the care of that doctor for 9.5 years, trying and failing medication after medication. No one told us there were other options, like an epilepsy center where there may be other treatment options available. No one told us that after failing the first few anti-seizure medications, the likelihood of a drug working was very, very small.

No one told us there were other options.

How did you respond when you learned that surgery was a possible treatment option for your child?

When we switched to Anthony's current neurologist, it was because we had moved across the state for my new job. Apparently there is something called an epileptologist! There is a doctor who specializes in diagnosing and treating epilepsy, and we happened to get an appointment with one just by chance. That doctor looked at everything in Anthony's records and decided to try a type of medication that worked a little different. When that medication didn't seem to be working, he was on board with us trying cannabidiol (CBD). When that didn't work, Anthony was evaluated as an inpatient and ready to be discharged from a 5-7 day EEG, when the doctor said the word surgery. I said, "No," and we went home.

When the doctor said the word surgery, I said, "No," and we went home.

What process did your family go through to accept the possibility of brain surgery as the right choice for your son?

When we got home, I started researching epilepsy surgery, mostly so that I could find every alternative to it. The ketogenic diet wasn't an option for Anthony because he was also already struggling nutritionally. At that point, we had tried and failed 14 medications. The epileptologist was telling me that surgery was Anthony's only possible treatment option left and that it had a possibility of bringing Anthony seizure freedom. I was still unsure about surgery.

Shortly after this conversation, Anthony had a seizure that just kept going. At the timepoint of status epilepticus, I gave Anthony a rescue medication, which for us was a pretty common scenario. This time it didn't stop the seizure. I called EMS and they gave Anthony 4 more doses of different rescue medications before the seizure stopped after about 45 minutes. I thought Anthony was going to die. I emailed his doctor that night and said to make a consult with the neurosurgeon.

I was ready to consider surgery.

Where did your family find support leading up to the surgery?

The Brain Injury Recovery Program (back then called Hemi Foundation) had a lot of information on the type of surgery I was offered as treatment for Anthony, a hemispherectomy. They also referred me to my local Epilepsy Foundation as well. I called and got ahold of the Epilepsy Foundation of Iowa's executive director who was a tremendous support and got us in touch with local families for peer support.

Anthony went on to have surgery. What was the recovery process like for your family?

Anthony in the hospital.
 

The recovery process was not what I was expecting. I was told to plan for him to be in the hospital for 2-3 weeks and then he would move to inpatient rehab for 2-3 months depending on how much recovery he needed. We also assumed he would no longer be able to speak, so we had a plan for assistive tech that may need to be implemented. I planned and planned for surgery.

He woke up after the 12-hour surgery in the intensive care unit. He smiled at me. And he said, "My head hurts. Can I play on my tablet?" He was talking and he was his normal silly self! Day 3 and 4 were the worst with the post-operative swelling in his face and his now lack of impulse control. He was combative at times, but it got him to move his arms and legs! He was in ICU for 4 days, then moved to a regular pediatric neurology unit. He got down on the floor on day 8 and slowly and wobbly crawled across the hospital floor. Crawling was his typical mobility, but he was just a little slower. He was doing so well that they ended up discharging him directly home on day 9! He did outpatient PT (physical therapy) and OT (occupational therapy) but quickly got back to his new baseline, which was not far off from his previous baseline.

How are your son and your family doing post epilepsy surgery?

Megan and Anthony Middaugh
 

Anthony is doing great now. Surgery did not give him seizure freedom like we had hoped, but there were other circumstances not related to the actual surgery that affected him.

Anthony had his surgery in December 2016, so 2.5 years ago. Once Anthony was recovered from surgery, we were still seeing seizures. So in April 2018, we added a medication he had not tried before and he has now been seizure free for 1 year and 3 months! This gave him seizure freedom from the first week he started it.

At first it was difficult to see any progress, the side effects from this medication included excess sleepiness and aggressive behaviors. However, after a few weeks of being on the medication, I started to see the old, best parts of Anthony come back. He wasn't seizing all the time, so his head didn't hurt any more. With his headaches gone, he started eating and finally gaining weight. He was able to pay attention at school for longer periods of time and started to progress through his IEP (individualized education plan) goals. Instead of worrying about where his trash can was if he got sick, he now gets to worry about where his wiffleball bat is.

He got to be a kid again, and it is the most wonderful part of this whole journey!

What advice would you give other parents when considering surgery?

In our case I wish we had known surgery was an option much sooner. Anthony was 11 at the time of his surgery and the plasticity of his brain would have been greater if the surgery had been done years prior.

I wish we had known surgery was an option much earlier.

My other advice is to listen to your gut and to do your own research. This makes a lot of doctors cringe, but don't just go out and believe everything you read online. Find credible education resources within the medical community. Every person is different, but research and information that gives you a better understanding is very helpful when you are considering any treatment.

Another important thing to do is to talk to other parents. Know the good and the bad. Trust your gut.

Another Family's Story

Authored By: 
Epilepsy Foundation Health Communications
Authored Date: 
07/2019
Reviewed By: 
Elaine Wirrell MD
on: 
Tuesday, July 23, 2019