I have debated with myself for a long time whether or not I wanted to make a post like this but I feel as though other moms and dads searching for answers deserve as many resources as possible for finding this diagnosis and getting prompt treatment. I dislike the idea of putting my sweet baby out there for the world to see, but if it makes a difference for even one other child then it’s hopefully worth it. Infantile spasms can be scary stuff and the more answers there are out there to help children like my baby girl, the better off we will all be!
As a note: this post will likely be packed with keywords. My intent is to make it as easy to find as possible for anyone searching symptoms like Abigail has in the hopes that it will inspire answers and action and improve outcomes for kiddos!
How it all started…
We first knew something was up when we had my daughter’s 9 month well check doctors appointment. She had flatlined on her growth and development curves and the doctor we saw was giving me the stink eye like I was neglecting the fact that my daughter wasn’t gaining weight or height and was falling way behind developmentally. At first, I bristled at the semi-judgemental tone of the pediatrician but I knew instinctively it was more than that. I was doing everything right! How could this be happening?
Something was up.
So now I was paying more attention, and the next morning I noticed what we had previously dismissed as just plain old weird baby head movements. Abigail would rather violently push her head forward repeatedly and I know I had just assumed it was connected with her poor muscular development- I thought she just had weak neck muscles still or something. NOW however, I actually took notice.
She wasn’t controlling it at all. It was completely involuntary. And what really tipped me off that this might actually be seizures….? Her whole body would tense up and she would do it even if it meant she would knock her head into something hard like your chin or a bony shoulder.
It didn’t take long for me to do the one thing worried parents should probably never do- I jumped on Google. After many frustrating hours of trying to find a video or a description of baby seizures that looked like my sweet daughter I finally found a video of a child sitting at a table experiencing a seizure that somewhat resembled Abigail’s movements.
That was it. There it was.
So, naturally I jumped on the phone to the pediatrician and bless the nurse on the phone and the doctor she patched me through to because they referred me to a specialist on my mom-instinct alone. I did not even have to bring her in to be seen at their office, the response was prompt and supportive! My next call was to the local Children’s Hospital and I was set up with an appointment to meet with a neurologist and have an EEG done to see exactly what was going on. We did this and got to meet one of the doctors on the team who recommended we set up an inpatient stay to get a good long reading and as much data as possible to diagnose her.
The hospital stay
Unfortunately, before her appointment arrived her seizure frequency increased and it was decided she should be brought in for an emergency 24-hour admission to be monitored more closely. That stay was the longest moments of waiting I had ever known. The revolving door of doctors and nurses making sure we were comfortable and updating with what little they had found felt like I was the personified version of that spinning wheel of death on a sluggish computer.
First, the team of neurologists analyzing her results told me they did not believe what Abigail had was infantile spasms. It was clear they were looking at every possibility and she wasn’t having many episodes to provide them much insight. I never thought I would pray for my child to have a seizure, but I did that day. I needed her to show them what her body was dealing with.
Then he came in. The doctor tasked with keeping me updated.
“You seem like you are handling this well, and I wasn’t going to tell you this yet, but we do know it’s spasms.”
…. and then he left me alone to process that information. And process it I did, with the first real tears I had shed through the whole process so far.
I was right! There was something wrong with my baby and I had found her some help. Victory!
I was right. Google told me it was seizures. My baby girl was having actual seizures in my arms for MONTHS and I didn’t know it until now. Defeat.
What kind of spasms though? What did that mean? Was it life-threatening? Would she need brain surgery? Is there anything we can do? If she can survive this what will it mean for her future driving, and watching movies, and if she is ever in a building when the fire alarm goes off and the lights start blinking will she be okay?
As it would turn out, my precious Abigail would be diagnosed with Infantile Spasms without the signature West Syndrome that often accompanies it. Now I knew what they were looking for on her scans to make their diagnosis, but she didn’t have it- this was good news (or so I assumed, they didn’t come right out and say that. I guess when you tell them you used Google they assume you may have done more investigation.)!
Next were blood tests, and a brain scan to see if she had any physical abnormalities that could be the cause. She didn’t. To this day over a year later we still don’t know the cause or what is triggering her seizures.
–> to read more about Abigail’s hospital stay and how we were coping, click here and here!
Controlling the Seizures
Abigail was discharged that day with what I came to call a ‘steroid blitz’ where we gave her prednisolone to stop the seizures and give her brain a chance to settle. She started on the highest dose and we slowly tapered off. She had one more episode after we started the steroid and then they seemed to cease. Follow-up scan showed she still had some abnormal activity, but that she was much improved!
Hurray!!!
We knew Abigail was not out of the woods: the doctors had simplified it to the explanation that her little developing brain may have learned to program epilepsy into its development. As she grew and her brain changed it might write epilepsy into its programming because that was how her brain had worked and developed in the rapid stages of infancy. She may well be epileptic in some form or another for the rest of her (hopefully long and full) life.
A few months passed. A few routine one-hour EEG’s came back clean, & Abigail was slowly catching up on her severely delayed height, weight, & motor development. We had her on a medication that had minimal side effects and seemed to be working for her! Then one of the scans caught new activity.
We were devastated. It felt like when you have built a beautiful showcase sand castle and adorned it with decorations and had just managed to dig the moat to protect it from harm before a wave comes barrelling in and destroys all of your progress. Shortly after that we saw her have a seizure as well. They were different now, more subtle and involving less of her whole body.
So we upped her med dose and waited. The waiting. The blasted waiting is enough to crack you sometimes. It’s hard.
Abigail’s Condition Now
It’s January of a new year. We are approaching a full year and a half since Abigail was diagnosed. She has made incredible strides towards normalcy and has far surpassed many kids diagnosed with infantile spasms. She can walk and dance and run and crawl! She tries to talk and is learning new words! She is growing and is a healthier weight and height.
But they’re back. The jackknife seizures. The head tossing.
I don’t know what this means for my sweet child. We have upped her dose several times now in response to new seizures. The goal is to reach a limbo point where the medicine allows her brain to operate without having the seizures so it’s a catch-22 between switching meds or upping her dose to see of it helps.
I want to scream, but I also just want to hold my girl in a quiet corner and make it all better. I want to rush her into an emergency room like I would with a broken arm or a wound and yell “fix her!” and then bring her back home all healed once they cart her away and treat her. But I can’t. You can’t cure epilepsy.
I just want to know how I can help my Abby girl have the best chance to grow to live a long, happy, normal life. I don’t know what that looks like yet, but nothing in this world will stop me from finding out!
Have you ever had to advocate for your child’s health? Are you an infantile spasms parent or caregiver?
This is obviously going to be a wild journey. My heart aches for the uncertainty of Abigails future and the impact her own brain may have on her life.
Interested in staying updated on Abigail’s Seizures?
Stay tuned to the blog and social media pages. I feel strongly that her experience is not unique and that parents out there on an emotional roller coaster like ours deserve some potential answers available to them!
My girl shares a name with Abigail from 1 Samuel 25 in the Bible who faced the famed killer of the giant Goliath and saved her husband and home from destruction. My Abigail, I believe, will also face off against this fearsome seizure condition and I pray she arises and is able to overcome.
