The 30th Year

Today, the first day of his 30^th year, started out with a seizure. Katie came to get me (good doggie!) and I watched my handsome son seize for about a minute. Afterward, as I sat on his bed holding his hand,  rubbing his arm, weeping silently (yeh, sometimes it gets to me in a kinda overwhelming way) I took a little trip down seizure memory lane----the one in the shower, the one in the bathroom when the lock broke and I slammed the door open with my shoulder, the one in the bathroom where his head was jammed between the toilet and the shower stall, the one in fourth grade when the teacher and nurse thought he was “sleeping” but was in status and ended up in the hospital for a week…….and on and on and on. When you’ve been dealing with uncontrolled epilepsy for 24 years there’s lots of seizures that come to mind.

Michael has been on about twenty drugs in his lifetime; none effective at controlling his seizures. Not one---none! He has tried the ketogenic diet---failed. Neurofeedback---failed. Vagus Nerve Stimulator---failed. And by failed I mean these treatments may have reduced seizure frequency somewhat for short periods of time but he still has them whenever he sleeps; every day, every night. That’s my definition of failure. Oh….side effects must be mentioned: increase in seizure frequency and intensity, confusion, rage, lack of concentration, word finding difficulties, insomnia, fatigue, pancreatitis (a seven day hospital stay with that one), weight loss, and the list goes on.

There is one thing I like about the national epilepsy association and that is their motto/slogan “not another moment lost to seizures”. It is so fitting as there are so many moments, days, weeks, even years lost to the effects of seizures and the drugs used to treat them.  And there are so many lives lost too. Up to 50,000 deaths annually in this country due to seizures and related injuries. Enough losses!

OK----that’s it. End of pity party. Onward to seeking something that may REALLY work.

We are through waiting for the next big pharma drug with a litany of side effects to be Michael’s miracle. We are waiting though----for Charlotte’s Web/Realm Oil. We are part of a movement--- a growing group of parents who want nothing other than a chance at making our children’s seizures stop through use of a natural product with no contaminants and minimal/no side effects!  We are waiting for Michael’s plants to flower in California. We are waiting and we are hopeful.

Sometime in this his 30^th year of life and approaching a quarter century of living with uncontrolled epilepsy Michael will try the oil that may forever change his life. He is hopeful. We are hopeful. For now….that is what we have.

If you are interested in learning more please visit www.realmofcaringfoundation.org.