We took a long weekend because we needed a break, we needed some extra family time, and we needed to celebrate.
Because Collin has had seizure control for FIVE years.
Using only food and no antiseizure meds.
I always like to take a minute to let that sink in. Feel free to do the same.
When Collin's Infantile Spasms started at 4 months old, we threw everything we could at it:
- Six weeks of ACTH therapy, which involved painful shots and all kinds of terrible side effects.
- Clonazepam as a seizure control buffer while switching from medicine to medicine. This "buffer" became permanent for months and put Collin in a perpetual fog.
- Super high doses of Topamax, which robbed us of our son for weeks. He was so nauseous he stopped eating altogether. He never opened his eyes. I only knew he was awake because of his breathing.
- An extended round of high dose steroids that made him swollen beyond recognition and irritable beyond belief.
- Vigabatrin, which we had to get from Canada, was the only medicine that had any positive effect. It stopped the spasms within days. It normalized the EEG within weeks. It felt a lot like a miracle. But we also had to have regular ophthalmologist checkups since damage to the retinal nerves is one of the risks.
- Unfortunately, when Collin's seizures came back two months later, they changed into a form for which Vigabatrin would not work. So, we moved on to Keppra, which somehow made him both sedated and grouchy. And did not stop the seizures. In fact, they came in clusters that we attempted to treat with high doses of clonazepam.
We had heard bits and pieces about the ketogenic diet and at this point, we started doing our own reading. I remember cramming in the back of our little Corolla with Collin's carseat and equipment, reading out loud to Kyle about the 66% success rate of the ketogenic diet. I stared out the window, sad and exhausted, and asked, "Why doesn't anyone know about this?". Thanks to a snowstorm that cleared out the hospital's schedule, we were able to be admitted last minute to initiate the diet in February. The day after Collin's first birthday.
It didn't work right away. Things got complicated with constipation, med toxicity, and lethargy. We tweaked for months, fought to get on a blended real food version rather than formula, and on June 21st, I sat crying in the middle of the floor, holding and rocking Collin during what I didn't know was his last seizure.
That day feels simultaneously like yesterday and a lifetime ago. Though the diet is complicated and restrictive, those restrictions have brought us freedom. Collin turned out to be a "super responder" - one for whom the ketogenic diet is fully effective and beneficial. And we are so very thankful.