There is no proper way to truly introduce our guest for today’s blog, but I will start with saying that Chris is an amazingly dedicated father to his daughter Gabby. After his daughter was diagnosed with infantile spasms, like me, Chris took it upon himself to spread the word so that other parents and caregivers would know they were not alone.
Sharing your story is always emotional, always difficult, but so important to ensuring we inform parents of the dangers of IS. We at Mickie’s Miracles hope that by reading Chris and Gabby’s story, you will find some comfort, comradery and drive to advocate for awareness of this disease. If, after reading, you feel inspired to share, please send us a message. Thank you Chris for the details you shared, and for allowing us to share your story.
If you’re interested in staying up to date on Chris and Gabby’s story, give him a follow on Twitter. Together, we can provide the tools for families to advocate for their children in order to stop fighting a ghost.
Thank you for agreeing to share your story with us and our community. Can you tell us more about your journey to inform others about IS?
I saw Mickie’s blog and was encouraged by others doing what they could to create awareness for infantile spasms. Since Gabby’s IS, my wife and I have tried to find ways to get the word out about this rare and almost universally foreign condition. Gabby was featured in East Tennessee Children’s Hospital’s (ETCH) quarterly magazine, and we created a website, infantilespasmsonline.com to try to help others learn about IS. We even wrote letters to a few celebrities who were epilepsy advocates, in hopes of finding ways to reach more people.
Gabby has been so blessed, but we would have never known to seek treatment if we hadn’t Googled infantile spasms when our pediatrician told us that it was a possibility. Because we did, we found other parents’ testimonials, and learned within just a few minutes of reading how debilitating IS could be.
We have learned on our journey that very few people have even heard of it, much less become familiar enough to spot it. This includes many of the hospital staff that we met during Gabby’s stay at Children’s Hospital. Mickie’s blog gave me new hope that there are others with the same goals and mission, so I wanted to do whatever I could to help.
When did you first notice there was something abnormal about Gabby’s behavior?
Gabby turned five months old on May 27, 2013, and had her first spasms on June 2, 2013. Gabby was in my lap while I was giving her a bottle one morning, and I noticed her stretching her arms out to the side every few seconds. I didn’t think much of it, because she continued to take her bottle and didn’t seem in pain or stress at all. My wife, Missi, noticed the same thing later that day when she was feeding her, but neither of us thought it was anything to worry about.
By chance, Gabby had a doctor’s appointment the next day (just a regular check-up), so I told Missi that I would mention the “arm thing” to the pediatrician just to see what it might be. We had no idea or concern at all that it could have been something “big”.
Did you know what infantile spasms was prior to Gabby’s diagnosis?
No, we had never heard of it.
At her doctor’s appointment, I told her pediatrician about the spasms, which I think I described as looking like the “startle reflex” babies do while they’re sleeping). He told me that it was probably nothing serious, but to keep an eye on her if it continued. Later that day, she did it again while I was feeding her. I grabbed my phone and took a video. I called the doctor’s office and told them that I had a video, and her pediatrician asked me to bring her back in so he could see it. Even after he watched the video (and shared it with another doctor in the office), he didn’t seem very concerned. He mentioned that it “could be something called infantile spasms”, which is the first time I’d heard of IS. He called ETCH and scheduled an EEG, but the soonest they could get Gabby in was ten days away. When her pediatrician scheduled the EEG, he told me that he just wanted to be cautious and rule out IS. He told me how rare it was, and tried to convince me not to worry.
I took Gabby home and tried to relax. He had told me that IS was rare, but hadn’t told me of the effects it could have on a child and their development. When Missi got home from work that evening, I told her about the doctor’s appointments. I decided to Google “infantile spasms,” something I usually recommend people not do, because you can usually find yourself down a rabbit hole of doom for no good reason.
The first site I found was from the Child Neurology Foundation. I quickly learned just how serious IS was. Still, I didn’t think that’s what Gabby had, so I backed out and started looking for more information. I found two testimonials from other parents, both detailing how they and their doctors had taken their children’s initial IS symptoms lightly and ended up with serious, permanent setbacks. Reading this terrified me. I walked (almost ran) to the living room and told Missi that we were taking Gabby to the hospital.
As a parent, what have been some of the biggest challenges during the duration of Gabby’s treatment journey?
Our biggest challenge has been the stress to our family. Before Gabby’s IS diagnosis, she was a perfectly healthy baby. We spent four days at the children’s hospital that first week, and we learned that everything we took for granted could change.
While Gabby responded positively to her ACTH treatment, we knew that she could relapse at any time. Her neurologist, Dr. Karsten Gammeltoft, was very familiar with IS. He explained to us that we should have hope in the treatment, and that we should take positive signs as they come, but he also warned us of becoming complacent. Many children could relapse, and this has kept us diligent. We knew from the beginning that every day without a spasm was a blessing, and we pray every single day that tomorrow is seizure free.
We spent 30 days giving Gabby twice daily shots ourselves, then we spent the next year crushing up Topamax and mixing it with her food. Since she came off the Topamax, we have had two spells where we were worried that she was having other small seizures. These both turned out to be false alarms, but only after having to take her back to the hospital for more EEGs and then having her wear a portable EEG for 24 hours. We are so grateful that she has had what we consider to be a remarkable, almost perfect response to her treatment, and we are optimistic that she has passed the stage in her life when the spasms can reoccur.
But still, we think every little tic and jerk that Gabby has could be some kind of seizure. We know that many other families dealing with IS have had to change their entire lifestyles to manage it, and we do not compare our stress and worry to theirs. We worry about little things we would have never worried about before, and our marriage, our finances, and our health have all been affected by the stress that came with IS.
What is it that you hope people will take away from reading your story?
Our hope is that more people can learn about IS so they will know the warning signs. Because we had agreed that I would be a stay-at-home dad for Gabby’s first year, we’d had our eyes on Gabby almost every second that we were awake from the time she was born until the day she started having spasms. Because of this, we noticed them. They were subtle, and they appeared benign, but we noticed them. If she had been in day care, maybe it would have taken a few days before someone thought to ask about these little, painless jerks. Those few days could have made the difference between Gabby developing the way she has and Gabby being stunted and challenged for the rest of her life.
She is a wonderful, amazing, funny, beautiful, smart, remarkable five-year-old. We do not take a single bit of that for granted. We were so fortunate to have noticed her spasms right away then, and to have been scared enough to seek treatment immediately. Dr. Gammeltoft has told us that he has treated a handful of children with IS, and that Gabby has had the best outcome of any of his IS patients. He has also told us that she is the only IS patient of his who he has been able to diagnose and treat within the first three days of her initial symptoms.
If more people were aware of all of these things, more children could be treated much quicker. Our hope is that we can create awareness so that future children will have the same opportunities as Gabby, and fewer families will have their whole lives flipped upside down.
Guest Blog by Chris Seay