During my pregnancy with Nico I remember thinking the way he kicked was odd. Not that I had anything to compare it to, but I guess it was that gut feeling. After he was born, those same movements I felt during the pregnancy continued, only they were in my arms as I held him. At two weeks I was told this was colic. We used oils and rubbed his tummy in hopes of trying to calm him. The Dr. reassured me that the chances of him having seizures (like I thought I’d seen) this young would be extremely rare, especially because I was young, healthy, and there were no problems during pregnancy. At 7 weeks I was told this was possibly a startle reflex, immature nervous system, or the change in weather since we had just moved from California to Florida. At 8 weeks old, Nico was diagnosed with Infantile Spasms.
At this time my only concept of Epilepsy was that there was medication to treat it. I’d heard stories of people who had seizures because they skipped their meds, but otherwise lived completely normal lives. Infantile Spasms sure didn’t sound scary, and my son wasn’t choking on his tongue or full on convulsing like I imagined seizures looking like. I really had no idea what we would be in for until he was almost three and eventually the diagnosis became LGS.
By the time Nico was 4 months old he had failed 2 seizure meds and started on 4 more (including ACTH) all at once. He was almost seizure free for a little over a year with the exception of growth spurts/ med adjustments. At the time our other option was seeing if he was a candidate for brain surgery which sounded even scarier. I had no idea just how powerful these meds were at the time. Nico lost the ability to smile, hold his head up, and eventually eat food and becoming fully dependent on a feeding tube.
Since the return of daily seizures, no med combination has ever fully been able to control them. We initially saw promising results with the ketogenic diet, but they didn’t last. The most recent seizure med I gave into trying sent Nico to the ICU for 2 weeks and made him extremely sick. After this ordeal the neurologist gave us a sample of a newer drug with an “OK” to start and it’s supposed to have fewer side effects. Some of those fewer side effects include turning skin blue or purple, and vision loss. Each new med feels like such a gamble and can become so emotional when it comes to putting your kid at such a risk. Sure, the meds are supposed to be there to help us, but when you see them almost kill your child and you need to make a decision that these awful seizures are better or even safer then what is supposed to be there to help, it’s such a hopeless, gut wrenching feeling.
Nico is now 9 years old. Last November he started taking medical cannabis in hopes of getting better control over seizures. I immediately noticed seizure reduction, and have even been able to wean some of his seizure medication. We have experienced some rough days, but I’ll take months and months of great days over a few bad ones anytime! This is all so new, and such a learning experience, so even those bad days have helped us to move forward and better understand what works and what doesn’t. I am hopeful for the day cannabis will be openly accepted as a treatment that will be respected and not looked down on. I’m especially hopeful for cannabis to be safely available for those who need it regardless of state lines.