My sweet son Price was born at 39 weeks, 5 days, weighing 8lbs 3.8oz at 20.5in long. What a big strong boy he was! He was beautiful, loud, farted like a grown man, and changed our lives in an instant. He still farts so loud. Other than some severe reflux diagnosed late at 3 months old, he was a healthy, thriving, normally developing little boy.
January 5, 2026, I was breastfeeding him like normal after I got home from work. All of a sudden he unlatched, looked up to the right, got slightly tense, and just stared for a little bit. It caught my attention but I thought he was just distracted looking at something, as he started feeding maybe 30 seconds after and acted perfectly normal. He did it again 2 days later. And then again daily for 2 days.
I am a trained RN by trade and knew from the second time that something was off. I suspected seizures but thought maybe I was overreacting. I took him to his PCP that following Monday and she thought it was his reflux since he had only been doing it during feeding.
After getting home, he had another episode not provoked by eating. I could feel a change. Something just shifted inside that was telling me to act and that something was really wrong. I suspected seizure activity much more clearly this time. I took him back to the doctor a couple days later when I just couldn’t shake the feeling, and had now recorded videos of what he was doing.
I could immediately tell she was concerned but trying to keep it together for me. She told me to take him to our Children’s Hospital an hour away, where we were dismissed in the ER and they weren’t convinced they were seizures. Thank God for the doctor who listened and pushed back. Because of him we were admitted and within a few hours being hooked up to the EEG we had confirmed seizure activity.
After starting Keppra, Price didn’t have any more seizures and we went home the next day. Three days later, the seizures returned. After back and forth phone triage calls and titrating his meds we were back at the hospital as a direct admission. From there, our world continued to turn upside down and inside out.
Medication after medication. The seizures were still not controlled or stopping. We were discharged after adding 2 more meds and adjusting to our new normal. We were reassured that the seizures weren’t causing damage and we just needed to give it some time, but also accept that this may be his new normal and that we may be living with a few seizures a day.
Things started getting worse and I suspected his focal drug resistant epilepsy was shifting to infantile spasms. He started making super subtle but odd movements. Not the typical jackknife position, but very small jerks and he would get super lethargic afterwards and fussy. I had already done all the research very early on, and I had the gut feeling I just couldn’t shake. Mother’s intuition?
Once again, his primary neurologist at that time did not think what I was seeing was spasm activity. Price would have noticeable behavior arrest, get super still, have a surprised look on his face, his breathing would get slow, and he would have the most subtle little jerks of his arms and his legs. Not the typical jackknife that is easy to spot, but about 10% of what it “should” look like. Then the movements became more apparent and his arms would fling out. We had an EEG done in the clinic that didn’t show hypsarrhythmia so the neurologist felt that was enough to cross infantile spasms off the list. I still wasn’t convinced. The nagging feeling ate at me all day. Every day. Everyone dismissed me.
I kept taking videos. We kept watching Price regress and decline. His sweet, precious little light started to dim where we didn’t even recognize him anymore. This happened for 3.5 weeks. We had a consult with one of the epileptologists who specialize in the keto diet and we were set to be readmitted for keto initiation. Upon that admission after hooking him up to the EEG he had another episode/seizure. Then the diagnosis came.
Infantile spasms.
I knew everything there was to know about that diagnosis. My heart shattered. I could barely breathe. I knew the prognosis and the uphill battle he was facing. I couldn’t believe that they had failed him and misdiagnosed. Again.
Why wouldn’t they listen to me?
He never presented typically from the beginning; always atypical. Our course of treatment shifted drastically and quickly. We changed from our primary neurologist to an actual epileptologist as things had become even more complex. He was a Godsend. We got our plan, started the oral steroids, and had a plan to start weaning two of the meds off that can actually worsen spasms. The spasms and focal seizures still didn’t stop. They only decreased to about 50%. He was having close to 20 seizures/spasms a day and we got them down to 5-10 a day.
So we tried ACTH injections. Grueling. Horrible. So many side effects. More ER visits, a PICU admission for hypertensive emergency. Really, really scary stuff. I can’t even begin to describe that kind of fear and anxiety. We did those for 6 weeks and simultaneously added Vigabatrin. Price became so floppy and it all felt like we were just starting all over. Constant home BP checks and keeping logs of them to send in. Now we had a BP med on board and kept having to go up on it. He got so big and swollen during this time too.
Maxed out in all therapies. Throwing every dart we could fit in our hands at the dartboard hoping it would land close to the bullseye. Something HAD to stick right? After the Vigabatrin was added, all seizures stopped. For 3 months. We could finally come up for some air. Then his focal seizures crept back in. We were traveling to specialty appointments an hour away, multiple times a week for months and months since January. Repeat readmission after repeat readmission. Still no answers really. But better than we were.
He is now on 3 meds. Seizures have once again come back, but much slower. Fighting insurance like our life depends on it. Fighting and advocating for him because his life depends on it. In a clinical research group study. Still trying to find the right combo and therapeutic regimen for him. Hopeful.
He is happy, healthy and growing. He is learning to finally babble. He has 5 teeth that are so cute and big. He’s got the chunkiest and longest legs. He loves being read to. When he laughs and smiles, his whole face smiles right along with him. Still not sitting independently or crawling but we are hopeful it is just around the corner. He is still maxed out in all therapies. The appointments have calmed down quite a bit. We still have no answers.
He has the sweetest little spirit and is such a fighter. No baby or child should ever have to know a life filled with this stuff. No brand new parents should have to grieve the life they longed for, for them and their child.
We live in two different realities at all times. One full of fear, anxiety and exhaustion down to your bones. And one that is full of hope, the little victories and being thankful for the tiniest of things. My earnest hope is that one day no family ever have to walk this path again.
What a cure for epilepsy would mean to Price and his family
A cure for epilepsy would mean a chance. A chance to grow and develop normally. A chance to play sports one day. A chance to eat regular food and drink thin liquids without having to thicken them.
A chance to talk and communicate with the world. A chance to be able to sleep without the excess fear and anxiety creeping in. A chance to be able to travel cross country or across the world without knowing the nearest level 4 epilepsy hospital.
A chance to be able to not live by a timer for when a seizure starts and be able to put the phone away and feel safe. A chance to not live and die by the clock and rigorous schedule of never ending appointments. A chance to be able to drive down the busy interstate without having to pull over on the side of the road during a prolonged seizure.
A chance to not have to know a team of doctors so intricately and intimately. A chance to feel like my child can just be a kid.
I yearn desperately for just a fighting chance for him and all the other precious babies and families out there to never have to feel the immense and heavy weight of this diagnosis.