Adam’s Story

Mother Uses Ketogenic Diet and Neurotherapy to Help Son Become Seizure Free and Escape from Autistic Rituals

Arlene and Adam

Having a child with epilepsy and autism has been the biggest challenge of my life. I have a great story to share with other parents because despite the daily difficulties we faced, after 6 failed medications, I found two alternative treatments that I did not know existed that changed my son’s life forever.

From the time Adam was a toddler, he displayed signs of Autism and was extremely obsessive compulsive with daily rituals that consumed his every task. By the age of 4, he started to seizure and had hundreds of absence seizures a day plus tonic clonic convulsive seizures several times a week.

My story is unique because today Adam is 21 years old, and for the last 10 years has been drug free, completely seizure free and 90% of his autistic tendencies have been disappeared. I have valuable information I wish someone had shared with me earlier as a parent struggling with these issues! A few years ago I was encouraged to write a book all about Adam and our story. I have mountains of research and felt that I could make a positive impact on other family’s lives that live with epilepsy or autism.

Adam was diagnosed by Children’s hospital at age 4 with Lennox Gastaut syndrome – a severe form of Epilepsy that is extremely difficult to treat with medication. All hope seemed lost and it was devastating for our family including Adams three siblings to watch him suffer.

Adam started out as a bright little boy and by the time he was 4, he had deteriorated in his abilities significantly.

A snapshot of Adams life from age 4 through to age 8:

  • Had hundreds of absence seizures a day
  • Extremely obsessive compulsive
  • Repeated sentences over and over
  • Anti-social – played alone, did not want other kids near him
  • Could not dress himself
  • Could not find his bedroom
  • Could not read or write
  • Barely spoke
  • Had no eye contact
  • Had no common sense
  • Had extreme behavior problems – could not leave him alone with other kids – he put his teacher in the hospital
  • Had NO short term memory – he would learn something then forget it
  • He seemed to be “in a fog”
  • Terrible side effects from the drugs
  • Could only go to school a few hours a day

The Ketogenic diet – High fat diet stops seizures

One day I got an excited call from my mom who was watching a TV program called Dateline. They were talking about a diet called the Ketogenic diet used for kids with hard to control epilepsy. This diet was actually a high fat diet used for children since 1921. Johns Hopkins University has been refining the diet with huge success.

The Ketogenic diet offers a far greater chance for seizure control than any of the anticonvulsant medicines developed in the past 50 years. Since 2005, more than 70 countries around the world offer the diet…but still is seems to be relatively unknown and never offered as a first treatment to desperate parents.

Here are the stats from Johns Hopkins when placing children on the Ketogenic Diet:

  • 27% had their seizures controlled after 1 year on the diet
  • 7% were completely seizure free
  • 20% had a greater than 90% reduction in seizures
  • 50% had a 50% or better decrease in their seizures

The diet was a challenge to get used to and every ounce of food had to be weighed by the gram, but within a few days on the diet, Adam was almost completely seizure free. Within 4 years we stopped the diet and he has not had a seizure since.

Johns Hopkins University is now doing studies on a modified Atkins diet for seizure control in adults and children with great success.

Neurotherapy – Video Games retrain the autism and epilepsy brain

I first met Dr Swingle when Adam was 12. Dr. Swingle was Professor of Psychology at the University of Ottawa for 25 years prior to moving to Vancouver. He has a huge list of credentials that I would be embarrassed to try and pronounce. He is a regular guest on radio and talk shows.

I loved his demeanor and Adam loved the treatments which looked like he was playing video games. Over a two year period we had 40 sessions. Within 3 sessions, we noticed a difference. His teachers pinned me at school and wanted to know what we were doing because the changes were so apparent.

Neurotherapy is a natural and holistic approach to the treatment of many conditions that affect the brain including autism & aspergers, epilepsy, ADHD, depression, dementias, sleep disorders, anxiety and much more. It is a kick start to the brain. The treatments teach kids to regulate their own brain functions. Neurofeedback technology was designed by NASA for flight simulations.

They doctor starts by doing a brain map. They could read the hertz levels of each neurotransmitter. They played what looked like video games with Adam but it was really changing the slow wave activity of his brain. When Adam reached the desired wave, a balloon would move rewarding him, and it was really fun!

With each session, we could see the hertz levels returning to normal. Once they are normal they NEVER go out of place again.

After Neurotherapy treatments – Results I could only dream of:

  • A major reduction in Obsessive compulsive
  • Reading level doubled in 6 months
  • Started to learn math
  • Better short term memory
  • More control of violent behavior
  • He could reason
  • Started to understand consequences
  • Asked for things he wanted
  • Ability to work independently
  • Was totally aware of what was going on around himself
  • Started to play with his siblings
  • Children’s hospital psychologist was amazed at the difference

July 2000 – The Psychologist’s report arrives

Here’s what he had to say…

“Adam, now a young adolescent, behaved very differently from the 1996 assessment. He was responsive, good-natured, and hard working. He was not overly impulsive or distractible. Speech was clear, but comprehension was poor. Socially he seemed immature generally but at the same time was a very considerate, well-mannered child. Adam was a very cooperative and hard working child, his behavior had improved substantially since our assessment in 1996.”

This time, Adam had come in and cooperatively sat down at the desk. He had been tested from 9am until 2pm with a break for lunch. The psychologist could not believe that he had Adam’s attention and cooperation for that long.

The doctor told me, “I cannot believe that this is the same child that was here four years ago. I was ready for him because I read my notes. I had a second person here to help me manage him, ready to go. Adam sat there and cooperated. He did every lesson I asked him to. He was friendly. He was cooperative. What are you doing?”

Adam today – You would never guess he was autistic and had epilepsy

Adam is 21 years old, has a girlfriend and has graduated from high school. He is the most loving and considerate person you could meet. He is a total sports fanatic, goes on dates and really enjoys his life. Because of his many status seizures early on, he did suffer some brain damage and will require limited support the rest of his life.

I tell my story for moms who need support and encouragement. There is nothing better than a mom who has experienced it before – to help another mom and give her hope for her child’s future!

Getting Adam back… A mother’s triumph over Epilepsy and Autism

If you would like to learn more about how these alternative treatment options can help turn your life and the life of your child around, you must read Getting Adam Back.

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About Arlene Martell

Arlene Martell is the publisher of EpilepsyMoms.com and the author of Getting Adam Back – A Mother's triumph over Epilepsy and Autism. She resides in a seaside suburb on Vancouver BC Canada with her husband James and their four children Adam, Justin, Shelby and Victoria.