“The Seizure Battle” – Heidi
When Samantha was five, she began having absence seizures. The quick, least scary type of seizures (still scary) where she would seem to look up for 2-3 seconds and come back to her normal self quickly. These turned out to be a blessing because they got us into a pediatric neurologist who finally put a name to her half decade struggle: GAMT deficiency.
Sam showing off her nails
Right after Sam began taking her creatine and l-ornithine daily, the seizures stopped. She had been having 50+ absence seizures per day, and suddenly there were none. For a couple weeks before creatine, while we were waiting for the definitive DNA test results to come back, she was taking lamictal and there was no change in her seizures. So, we were pretty happy that we had a diagnosis and that the seizures had quickly ended with GAMT treatment. We weaned her off lamictal and a month or so later the absence seizures picked up again. So, back onto lamictal and continuous increases to the dosage. Then trying different drugs, each with their own nasty side effects that made her sleepy, cranky, hyper, lose half her hair, etc. We’ve had long periods of no seizures. But they always come back and when she was nine, they turned to the more scary kind. The convulsive kind.
Nothing is more horrifying than watching one of these take hold of your child, their body shaking, their face blue, and eyes large. After every seizure I retrace my steps. What did she eat the night before? Was it too much protein? What time did I give her meds? A little early? Or late? Is she getting another sinus infection and I forgot to do her sinus rinse? Basically I go on a witch hunt- for myself! How did I cause this?? Mostly because I want to think that I’m not powerless and there’s actually something I can DO!
Sam & Dad
At first the convulsive seizures were pretty random and lots of time would pass between them, but over the last two years they have picked up in frequency. They almost always happen in the evening or first thing in the morning. Again, we’re lucky because she is usually in her soft bed and doesn’t injure herself, but she will often require hours of sleep to recover from them.
When they picked up in frequency, I started waking at night again and again, thinking every little noise our house made was Sam having a seizure. I’d bolt out of bed at 2:00am and run down to the basement to find Sam and her sister sound asleep. I’ve never discovered a seizure from all this paranoia. It’s almost always her poor younger sister that yells up the stairs for help that alerts us to yet another seizure.
In Utah, if your child has tried enough anti-seizure meds without success, you can apply for a permit to administer CBD oil (hemp oil). We got a permit and started her on CBD oil about three months ago and went through a little period of relief and then the seizures came back with a vengeance. So the battles goes on. The choice between more and more drugs versus continued seizures, but possibly better quality of life between the seizures.
Sam holding her baby cousin
Seizures are so hard because there is no one right answer for how to beat them. Each child is unique. Even in our CCDS community where biologically our kids have so much in common. I wish I could end this post with some great news. With some awesome advice to help others. Maybe I do have some advice for those who don’t experience this. Be patient with your family members that can’t travel as much or as far as you because they have a child with epilepsy. Be understanding if they can’t keep their kids up late with your kids because they are constantly guarding their child against a seizure. And parents that keep blaming yourself, well, you’re not alone. We all blame ourselves a little right? It’s that huge responsibility of caring for a child you love dearly. Especially one who leans extra heavy on you for their care.