Our journey started in July of 2002 our car had broken down and we went to go get it.We left all the boys at home.We got home and were told our almost 11 yr old son Daniel had a seizure and was at the E.R. at Mary Bridge.We raced over there and were totally freaked out.We knew nothing about seizures and Epilepsy.We saw the doctor who assured us he probably would never have another that it was probably a fluke.I later found out he was watching his brother play a car racing game on the computer,so I asked if I should keep him away from the computer and was told it probably wasn't related.We were given the basic instructions and sent home.
He was Supposed to stay up all night later that week for a sleep deprived EEG.He asked if he could use the computer and I told him to go ahead after all the doctor said it was okay.Five minutes later he had another Generalized Tonic Clonic (Grand Mal) we were so freaked out.We were told it was a fluke it probably wouldn't happen again.They were wrong and it happened over and over and over.
It's continued happening for 17 very long years.We met the Neurologist who I didn't care for at all and did the whole myriad of medications.A lot of them had horrific side effects.We tried the Ketogenic Diet,The VNS and even looked into brain surgery.Our son was having seizures so often more than I could even count.He also was having a lot of injuries and countless ambulance rides and hospital visits.
People we were once close to didn't want to come around anymore including relatives,because they couldn't "deal" with it. It was so disheartening and lonely.
His brother Michael started having cognitive issues as well and also started having seizures.His started at age 14.
Our lives since then have been filled with doctors,hospitals,ambulance rides,surgeries,medications,EEG's and a whole lot of injuries.More than I could ever share in a brief post.
Epilepsy to me is so misunderstood and under reported People don't understand the significant danger seizures can cause.Both Daniel and Ariel were given Make A Wish trips meaning the doctor had to write that their seizures are life threatening.
It has been a very rough road that I wouldn't wish on anyone.There have also been rainbows following the storm clouds.One is seeing how my kids (now all adult age,but impaired) rally around each other when one is fallen and grab the rescue meds,the oxygen, the pulse ox, a pillow or a wet rag to wipe a bloody mouth from a bit tongue.I see the empathy and compassion they have for others,especially those with disabilities.
I see their eagerness to lend a helping hand if needed.I'm so proud of the people they've become despite all their difficulties.
