Thursday, December 29, 2016

How We Are Managing Juvenile Myoclonic Epilepsy Through a Healthy Lifestyle

On May 20, 2012, my son had a series of seizures and shortly after, he was diagnosed with Juvenile Myoclonic Epilepsy, or JME, a form of epilepsy that starts in childhood or adolescence. People with JME experience muscle twitching and jerking. They may also have other seizure types including full-blown convulsive seizures or absence seizures {staring spells}.

Epilepsy was no stranger to our family. My husband's grandpa and my uncle both had epilepsy. We knew enough about the disorder to know that certain factors could contribute to the precipitation of seizures. For example, sleep deprivation, fatigue, mental stress, and dehydration are all factors that can lead up to Andrew having a seizure. We also knew that there were terrible side-effects to the medications that are used to prevent and treat seizures. Sometimes the way that medications control the seizures can effect the way that the brain works in other ways and this scared us almost as much as the seizures did.

 We were lucky enough to have a neurologist and his physician's assistant, who listened to our concerns and worked with us to develop a plan for Andrew. We decided to try lifestyle changes{HUGE}along with a series of vitamins and supplements before putting him onto a daily  medication. We left that office armed with a list of changes that we could try that may or may not work and a prescription for him to take immediately, if and when he had another series of seizures. I'm not sure that the doctor was buying into the whole 'lifestyle change, natural healing' thing but we were committed and he supported our decision.

Here was our plan of attack:

  • Eliminate all artificial dyes from the diet & eat organic
  • Eliminate gluten and most grains {follow a very low-carb diet}
  • No less than 8 hours of sleep and plenty of naps
  • Always in bed by midnight- no sleepovers
  • Limited screen time/ video games
  • Journaling to manage stress
  • Drink half of his body weight in water everyday- more when he exercising
  • Supplements- prescription strength magnesium, riboflavin, B6 and Vitamin F {Omegas 3 & 6}
  • Eliminate as many chemicals from our home as possible

I went home and cleared out our pantry, cleaning supplies, laundry detergent, dishwashing detergent, soaps, candles, plug-ins, name it. Anything that had chemicals was donated or thrown away.

I scoured the internet for gluten-free recipes and all natural cleaning supplies. I spent hours researching JME and praying that our efforts would help Andrew. The hand tremors continued and every morning I feared he would collapse into a convulsive seizure, but he never we stayed the course. Another abnormal EEG but no more tremors and no we continued our healthier lifestyle. No one complained.

When Andrew started having debilitating headaches, the physicians assistant recommended some more dietary changes along with using peppermint and lavender essential oils on his forehead, temples and neck. He was also prescribed a pain killer for the headaches but we found that the oils were pretty effective in managing the pain and he seldom needed the medicine. At one point our neurologist expressed such surprise that Andrew's tremors had not turned into full blown convulsive seizures, which usually occurs within months of the first hand tremors. He simply said, "keep doing what you're doing because whatever it is, it's working." So that's what we did.

Four years after his diagnosis, after numerous abnormal EEGs, Andrew went in for another sleep-deprived EEG and the results...NORMAL! We were so happy but we didn't change a thing.

For over 6 years we've managed his epilepsy this way... with no medicine.
Recently, he went in for his final test...a 48 hour sleep deprived EEG test. No 'sparks', as our neurologist calls them{abnormal spikes}. The doctor told Andrew that he 'graduated' from his office and doesn't need to come back to see him but urged him to continue following his healthy lifestyle to manage his JME.

I don't know how or why the changes worked for Andrew's brain. I just know that they did. If you're struggling with managing your child's JME you may want to consider making the lifestyle changes above. While I can't guarantee that they will work for your child, they can't hurt. I wish you the best.