Three Days in June
January 31- Three Days in June
This was a hard post to write. Epilepsy was a part of Audrey’s life for four years. Over that time, there was so much to say about it. But I chose 3 days in June 2019 that were especially difficult. I wanted to write about them because so many people knew that Audrey had epilepsy, but I wasn’t really secure in talking about Audrey’s battle with epilepsy outside of a small circle. After reflecting on her struggles, I realized how much of a fighter Audrey is. This post was so hard to write because I HATE epilepsy. But in spite of Audrey’s biggest foe, she always kept on.
June 8, 2019
I still remember the last fight that we had pre- epilepsy. I was upset with my wife Amanda, as she had forgotten to bring the free coupons to mini golf. We were on the hour and 6 minute drive from Rockford, Illinois to Carol Stream, IL driving down Interstate 90. By the way I was perseverating on it, those 4 free vouchers for mini golf were worth hundreds not the $52 pre tax that they were worth.
I was still probably salty when we were enjoying what I thought was our last meal in Illinois before we arrived in the happiest place on earth the next morning. It was probably that frustration of not being able to compete at the 18 hole Fantasia Gardens that I didn’t take seriously when my wife and mother took a video of Audrey at the Chick-Fil-a play place. That 2 minute video was so much more important than the mini golf course based on Walt Disney’s 1940 musical masterpiece. That video contained the first “head drops” of Audrey’s that are documented on video.
Maybe I was just hangry, as I felt better on the way home. My disappointment of not being able to defeat my family in mini golf was transferring to the excitement that we would be in the Magic Kingdom in less than 16 hours. We washed up the girls, and I was rocking Audrey to bed. Audrey had just celebrated her first birthday 10 days earlier, and I was so excited for her and her sister to have a great time in Orlando.
During this time, I was just finally decompressing after a stretch of work and birthday party planning. I had a planning meeting for the 2019-20 school year on Friday, June 7th, but now, I was truly ready to enjoy the end of the school year with my family. At this time as I am getting excited about the trip, Audrey had dozed off while I rocked her in the brown Lazy boy that my parents and grandparents rocked me to sleep in 35 years earlier. I had heard faint conversation from the living room in my parent’s house, but didn’t pay it much attention, as my mom, dad, wife and oldest daughter were probably just getting ready for the flight tomorrow.
When Amanda came into the room with a serious look on her face and said “we need to talk,” I was surprised that she would be mad at me for being upset over free vouchers. I thought that the realness of soon eating mickey pretzels and mickey ice cream bars would be enough to forget that stupid fight. She explained that she had done some research and the head drops on the video may be Infantile Spasms. Infantile Spasms sounds pretty innocuous, definitely not preparing me for the serious symptoms and developmental delay that Audrey would have if she indeed had this catastrophic form of epilepsy.
I walked down the 9 steps from the top floor of may parents tri-level to the living room where Amanda explained to me that the head drops we saw were not reflux, but could be a life threatening type of intractable epilepsy. She said the acronym STOP applied.
I decided to share this, as I had never seen anything like it. Hopefully, this acronym will help other people in the future with identifying IS. As rare as it is, we have had some unique crossing of paths with other children and their families that have been affected by Infantile Spasms.
See the Signs✅
Take Video ✅
Obtain Diagnosis
Prioritize Treatment
We called the Emergency Room, and they recommended we come in. Within 10 minutes, we were in my car with Audrey in the car seat. We were enroute to Central DuPage Hospital which was the nearest hospital to my parents house, an 11 minute drive away. After a short wait, the ER Doc called a neurologist on call at Northwestern and had Audrey admitted. Audrey was immediately hooked up to an electroencephalogram (EEG) on the 4th floor of CDH.
We woke up to meet Audrey's first Neurologist. He confirmed that Audrey had hypsarrhythmia which is the brain wave pattern that is concurrent with West Syndrome. Audrey had been diagnosed with Infantile Spasms. Diagnosis Obtained ✅ It sounds innocuous, but it is a rare form of encephalopathic epilepsy that occurs in 1 in 3500 children. Our flight to Orlando which was a few hours from taking off was off the table. Audrey started on high doses of prednisone while we stayed in the hospital to do more tests. If you remember Audrey from the 2nd half of 2019, you probably remember how swollen her face and body were as a result of high dose steroids. She had the cutest chubby cheeks.
Audrey first was given high dose steroids (Prednisone) to fight her spasms. Clinical trials have proven that Adrenocorticotropic Hormone (ACTH) was the best medication for Infantile Spasms. But since Mallinckrodt (If that name sounds familiar, they were also in the lawsuits that were brought against pharma bros such as Martin Shkreli in 2016) bought ACTH in 2001, the costs of a vial have skyrocketed from $50 a vial to over $46,000 a vial. That has bothered me for 5 years. Since insurance would not cover ACTH, it was high dose steroids which was the first (of many) medication Audrey was prescribed for her epilepsy.
We gave Audrey her first dose of Prednisone in the hospital. Prioritize Treatment ✅,. It was the first day of the rest of her life that she would never take less than at least 2 medications a day. That doesn’t include the 3 different heart medications that were prescribed to lower her heightened blood pressure. Medicine became a part of our life. It became a daily ritual to send a morning and night time picture to remind each other that Audrey had her meds. The picture below is when Audrey was only on three meds. Sometimes it was a high as six different meds at a time. I still had 44 pictures of meds that I still haven’t deleted off my phone when I checked.
Those Anti Epileptics over the years:
High Dose Prednisone
ACTH
Vigabatrin
Topiramate
Epidiolex
Keppra
Trileptal
Clobazam
Briviact
Phenobarbital
Lorazepam
Ketogenic Diet
To put it in focus, since 2019, the Chicago Bears have had 8 starting QBs since Audrey was diagnosed with Epilepsy.
Mitch Trubisky
Chase Daniel
Nick Foles
Andy Dalton
Justin Fields
Trevor Siemian
Nathan Peterman
Sorry for those of you who don’t get sports references. On April 29. 2021, the Chicago Bears traded up to draft Justin Fields with the 11th pick. While Chicago sports fans were (and still are) mixed on Fields, I had dreams that Fields would be Audrey’s hero. Not just because I am a sadomasochistic Bears fan, but because Justin Fields is part of the one in 26 Americans who are diagnosed with epilepsy. I ordered Audrey and I matching Justin Fields shirtzees. If you think that Audrey’s health and developmental goals to those of an NFL quarterback are outrageous, well, you are right. Just like I believe Justin will be the Bears franchise quarterback, I always believed in Audrey. She was so resilient for someone who had daily seizures for the last 3 years. Much like I hope that Justin Fields will one day be a franchise QB, I hope that Audrey’s fight will help others. Again, if you see an infant whose head is dropping, remember STOP.
I have 212 videos of Audrey on my phone. Or at least that's what my Iphone face recognition says. The last 5 months, we have watched videos on my phone, Amanda's and all the videos that friends and family have sent. It has been really helpful sometimes as these videos have sayings, words, laughter, and dancing that really remind us of who Audrey is. What sucks is I have 40 videos of Audrey seizing. There were probably more that were deleted. We had to videotape Audrey’s seizures to give her neurologists an idea of what her seizures were developing into. Mandy has watched some on her phone, because after the seizure is done, Audrey will be herself again and be supercute. I have not been able to watch the seizure videos yet. They are a reminder to me that Audrey was not herself when she was seizing. The worst part of it, Audrey was fighting the seizures, you could see that she wanted to be herself, but just couldn’t beat them.
June 25, 2019
After two weeks of treatment, Audrey was not seeing any changes and was admitted to our local hospital. It was there that she met her second neurologist, and was in the hospital for a week waiting to be approved for ACTH. It was during this stay that I consumed my first podcast on epilepsy. It was CURE Epilepsy’s “Seizing Life” Podcast. It was hosted by Kelly Cervantes, whose daughter had Infantile Spasms too. Small world, just earlier in June, we happened to see her husband Miguel in a little show in Chicago called “Hamilton.”
We met Kelly and Miguel in New York as she was promoting her book on grief: “Normal Broken.” I just finished it, it is a great book for anyone experiencing grief. Her daughter and Audrey had many similarities that really hit home. Anywho, the “Seizing Life” podcast was my first foray into content on epilepsy. I read informational texts, biographies, true stories, and listened to many many more podcasts over the years since.
June 30, 2019
Audrey was finally approved for ACTH a week into being admitted at our local hospital. They were not equipped to give her ACTH, so Audrey was transferred to Children’s Wisconsin. Amanda’s cousin is a doctor there and was super helpful. It was there that Audrey received her 3rd neurologist. A week later on the 5th of July, Audrey left the hospital for the third time in a month after 21 days in three hospitals. Later in July, after a short hospitalization, Audrey began the medicine Vigabatrin, and in less than a month she was seizure free.
That month was terrible. I thought nothing positive came out of it. But in early July 2019, I remember friends of Hannah’s that came to play on her playground with her. She hadn’t had much time to just be a three year old. But she got to play with her friends for the first time in a long time. And what did she tell her friends about? Her sister, how to spot her seizures, how to give her medicine, and how to soothe her during a seizure. I was amazed by how empathetic Hannah had become.
There were high points. By August of 2019, after adding the third mainstream IS drug vigabatrin, Audrey was having no head drops. Her EEG even had no hypsarrhythmia. By November, we were celebrating 4 months without a seizure. By January of 2020, Audrey had more testing and had developed what her neurologist thought were focal seizures. By the end of the year, Audrey had once again been having seizures similar to her original infantile spasms. From then on, Audrey didn’t go a day for the rest of her life without a seizure.
Four years later in June of 2023, I decided to ride in honor of Audrey and the one in 26 diagnosed with epilepsy. I decided to ride 126 miles for the epilepsy foundation. The support that Audrey’s friends and family provided meant so much to me. One of my friends even ran 126 miles in June for Audrey. I felt so grateful for all the support. Like I said earlier, I haven’t articulated this much about Audrey’s epilepsy, but after feeling that support, I felt more empowered to. After writing this, I thought to myself, "did bringing all this up help?" I thought about it, and for the time that I wrote about this, all I thought about was my superhero.
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