Mother Shares Her Story of Hope
No one could have prepared me for the journey into the world of seizures. For eight long years, it consumed my life and all my attention went in that direction. Now that my son is seizure free, I remember what our family went through, so I dedicate much of my time to helping educate other moms, shorten their learning curve, tell them the mistakes I made, and hopefully make their journey a little easier.
I learned alot and I am happy to share it. Much of what I learned I stumbled upon as there was no Internet or support to speak of when I needed it most. I spent many years in frustration and even anger. I was watching my dreams for my son disappear and did not know how to help him.
Even though each families story may be slightly different, there are many similarities and we can learn from each other. It is an honor to mentor and encourage parents whose child may be newly diagnosed. I want parents to know they are not alone. I look forward to talking about a variety of topics that cover many aspects of epilepsy, treatment options, resources, stories and the emotional aspects that are rarely discussed.
As more treatment options become available, parents are learning to become more involved in their child’s treatment decisions so becoming educated is more important that ever. Epilepsy is a balancing act. How a parent reacts to the challenge will directly impact their child, other siblings, spouse, educators and others who are a part of your child’s life. There are many challenges – and many rewards along the way.
My journey with epilepsy began in 1991 when my son Adam, then 4 years old, had his first seizure. Like most parents, it was the beginning of years of struggle to control seizures, constant doctors appointments, changing of medications 6 times, experimental drugs and terrible side effects. The discussion of surgery seemed like the last option. It was heartbreaking and there was a point when I truly wanted to give up hope.
Adam was diagnosed with Lennox Gastaut Syndrome. He had multiple seizure types including absence seizures all day long, tonic clonic 3 to 4 times a week, drop seizures and more. It was devastating to watch him turn from a bright happy little boy to a child who could no longer function and looked sad and depressed. His prognosis was grim — continued seizures and progressive mental retardation. Adam is the oldest of 4 children and it was very difficult to watch as his younger siblings, one by one, caught up and passed him.
Along with epilepsy, Adam had Asperger’s syndrome, a form of autism. Although he could talk, he was extremely obsessive compulsive and anti-social. His world was in tumoil. He preferred to be alone and as his seizures increased, his abilities decreased. The side effects of the medication left him lethargic. He had stomach aches, leg cramps, mouth burn, thinning hair and his short term memory was gone making learning a challenge. He spent a lot of time throwing up and sleeping on the couch in his classroom.
Worse than all this – he became angry and violent and with a newborn in the house, he could not be trusted. He screamed for no reason, he could not leave the house because he would not find his way home 2 houses away. He could never be left with other children alone. In grade 3 he attacked his teacher who was sent to the hospital in an ambulance. He was transferred to a school for children with behavior problems. Things just seemed to go from bad to worse. His life was out of control.
No one needs to tell me how hard this is. I have been through it all.
When nothing else worked – I prayed. Within 3 days, my prayers were answered. On TV, Dateline NBC did a special show on epilepsy and talked about a treatment, a high-fat diet called the Ketogenic diet that worked well on kids when medications failed. I knew it was the answer we were searching for. About 3 months later, when Adam was 8 years old, we started the ketogenic diet. Within 3 days, the seizures stopped. It was like a miracle. Our hope returned.
That was 14 years ago – hard to believe. Once we got the seizures under control, we worked on the autism and found an equally effective treatment called Neurotherapy. In future blogs I will talk about both these treatments in great detail – the benefits, the downside, the controversy.
When Adam was eleven, I was co-founder of The Fraser Valley Epilepsy Society, later renamed The Center for Seizure and Epilepsy Education in B.C. We produced much needed educational materials for schools, support for parents and workshops for parents and health care providers. We produced 4 well known epilepsy TV commercials, now viewed all over the world in different languages. The society continues to thrive and now have a dozen or more PSA’s.
In early April of 2009, Adam turned 22. In 2005 he graduated from high school with his peers, after completing a life skills program. He looked so handsome. Although thriving in most areas of his life, there was some lingering damage to his brain from the many episodes of Status seizures.
I now work on a website dedicated to helping other moms. My site is called EpilepsyMoms.com and shares stories from other parents, a newsletter and free podcasts interviews I do on a variety of topics related to epilepsy. My life was changed forever, and I hope I can have a positive impact on yours by sharing what I learned.
Warmly,
Arlene Martell
White Rock, B.C. (Canada)
