A brief history of our Infantile Spasms journey:
I came home from a long, hot day at Six Flags and we bathed Leah. She had a series of “episodes”. They had a seizure-like quality to it, so we recorded them. We decided after consulting with our pedi, to head to our hospital and get into the ER to get our videos shown fearing we were dealing with infantile spasms.
Aug.15, 2018 IG post. Oh my sweet girl. When I started seeing the funny reflexes two weeks ago how I wish I had acted then. But hindsight is always so much clearer. Then last night. To watch your daughter have a seizure right in front of you might be scariest thing ever. And once again time has stopped. We are back inpatient and having an EEG run. The neurologist found some of her seizures and they’ve been captured on the study. So far they have ruled out infantile spasms but other than an abnormal scan, we are waiting for more results and hopefully a better direction of a diagnosis. So once again we wait. And cling to hope and Jesus and prayers. Which is an odd thing. To pray that her body seizes enough to lead us to a conclusive diagnosis.
Sadly….after 3 days, the EEG were not showing the data they felt validated our concern, and they sent us home.
Aug. 17, 2018 IG post: Last night the eeg got turned off and we came home. Other than oily hair, we came home with the same info we went into the hospital with, she is having seizures. Epilepsy. But my mama gut still feels that’s not accurate. Her videos are much more in line with infantile spasms, so now to find a second opinion.
I checked out of that hospital still so convinced were were seeing IS. I had my gut feeling and a handful of videos; and so we left, and I headed to a different hospital in our city. 3 more days, and we had a new diagnosis to add to our list.
Aug. 20, 2018 IG post: Our worst fear was indeed confirmed just now, landing us with a diagnosis of infantile spasms. They are keeping her one more night as they start her on a heavy front-line steroid to try to get out ahead of it and get the spasms stopped. The neurology is more pressing than cardiology, so open heart surgery will be postponed until after this round of treatment. This will push ohs back about 8 weeks, on a loose time table. Please pray for minimal side effects, minimal personality changes while on the steroids, a quick response and end to the spasms, and my deepest prayer that we got out in front of any regression.
One last picture of this sweet face. The face I’ve started at for months. The face I know better than my own. One last picture before steroids takes over her life and blows her face up and changes her appearance.
Oh my sweet girl you are so loved. And you are so beautiful. Today. Tomorrow. Always. May you always feel that love and know no matter what you are a miracle, a fighter, a warrior. I have no idea how to walk out weeks upon weeks of your body receiving steroids and the effect and toll it will take on your body and personality.
But you are His. I’m trusting Him with every detail. He loves you even more than I do which feels almost impossible. His plan for you is good. I am still full of hope even in my brokenness and fear.
A Few Things We Learned to Help You on Your Journey:
1. Familiarize yourself with IS.
One night when Leah was a tiny baby and on a rabbit trail for something else, I stumbled upon some videos for infantile spasms. They caught my attention because of the increased likelihood that a kiddo with Down syndrome gets infantile spasms. (“Infantile spasms is the most common seizure type occurring in children with Down syndrome with an overall prevalence of 2.5% to 3.1%. The prevalence of this age-specific epilepsy is significantly higher in the Down syndrome population compared with the general population (0.016% to 0.042%) and can be associated with poor long-term developmental outcomes and further seizure types if not treated early and appropriately” per this study.) It wasn’t anything we had on our radar or were anticipating that we would encounter, but because I had seen videos and watched a few other parents on their own journey with IS I had a loose familiarity with it when Leah started having her seizures. I know for sure I wouldn’t have even thought to record her and question what I was seeing had I not traveled down the rabbit hole that night. (There are no coincidences, God prepared us in advance.)
These videos were helpful to me in being aware of the different ways IS can present in different kiddos: https://infantilespasms.org/what-can-is-look-like/
2. Trust your gut (and advice from other mamas who have walked this road) if you see signs of IS.
From NINDS: “The onset is usually in the first year of life, typically between 4-8 months. The seizures often look like a sudden bending forward of the body with stiffening of the arms and legs lasting for 1-2 seconds; some children arch their backs as they extend their arms and legs.” It seems that most moms I connect with have an experience of having to trust their own gut feelings. There is still a mindset that this is rare even from organizations trying to educate, even though a couple thousand new kids are diagnosed every year. Sadly is if it is missed, and the longer it is left untreated, regressions, and additional developmental delays can happen. I write this not to scare, but rather to encourage you to pay attention because it can be overlooked. In fact, both this article and this article discuss that there is a gap in diagnosising it by primary care providers, and may require you as the parent to advocate for your kiddo. Our pedi echoed these articles, and confirmed that some pediatricians may not ever see IS in their practice, or can even misdiagnose it as newborn startle reflexes. Which brings me to my next point…
3. Record anything you can, and get to an ER stat.
Since your kiddo may not have an episode when you are in the ER, the video evidence can speak loudly and provide enough data to have a neurologist order an EEG. With infantile spasms, time is of the essence. Do not wait for a consult with a pediatrician, get to the ER stat. In both hospitals I played the mama bear card, strongly requesting that we were not leaving until we had an EEG done. An EEG (electroencephalogram) will monitor the brain waves and watch for patterns that happen. During our first hopsital stay the presence of a distinct pattern called hypsarrhythmia is not detected. This is what lead their team to dismiss Leah’s IS. So just know sometimes IS can show up before it is will even be detectable on an EEG. Thankfully, the second hopsital was able to capture them which allows a neurologist to conclusively give a positive IS diagnosis.
4. Know there is hope.
I know it is scary. I know the drugs feel overwhelming. The side effects, the risks, the trauma, watching your kid seize, the fear. All of it is sooooo real. But there is hope!! Several frontline drugs seems to work well, and if you have a kiddo with DS, a large majority of our kids seem to respond well to these drugs and have a fairly notable rate of recovery from IS. With Leah, the IS has lead to other issues and complications, but that is a different story for a different day. Today it is enough for you to know this is not a death sentence. This is not the end all, worst thing ever. You can do this. Your kiddo can overcome. Somehow, by the grace of God, we do what we do every day for our kiddos, we advocate, we pray, we research, we love on them, we fight for them, we conquer our fear and press on. Sometimes one day at a time, or one hour at a time, but believing our kid can overcome. My prayer for you if you are reading this right now in the middle of IS hell: you are not alone, your kiddo is soooo loved, and I am praying for wise doctors and the right treatment plan for you so that you both can be on the other side of it.
One last thought. I find it cathartic to write. To journal. Once we landed in the hospital, someone sent me the Wreck It Journal. I loved having promps that gave me the freedom to be destructive and get all my frustrations and aggressions out on paper. If you find yourself walking though this season, I encourage you to cry, find support, lean on your friends, and wreck your journals. Sometimes, getting the yuck out, allows you to move forward as a better advocate.
Missed some of our journey with Leah, catch up here.