November is Epilepsy Awareness Month
"Genes are not our destiny, they are contantly being altered". Dominic D'Agostino, PHD
Watching our sweet children suffer from epilepsy is heartbreaking. Every second feels like an eternity. When an Angel is lost due to SUDEP (Sudden Unexpedect Death in Epilepsy) it is felt by the entire community.
Epilepsy affects the majority of individuals with Angelman Syndrome but it does NOT mean that nothing can be done.
We are going to share with you stories from several AS families that have been able to STOP seizures or significantly reduce them with diet therapy.
Did you know that there was a small clinical study done in 2012 on the most flexible diet therapy to see if was able to stop or reduce seizures in individuals with Angelman Syndrome? It was and continues to be the only proven treatment to date to effectively reduce and STOP seizures in individuals with AS. You can read about that study here.
So, why is this not common knowledge?
Why is this not common practice?
Your genes are not your destiny.
What does this even mean? Dominic D’Agostino is talking about Epigenetics. The power of behaviors and environment can impact our genetics. In this case, the power food can have to support the body and help it function well.
What else can diet therapy help with?
Parents are reporting (like in the study) improved sleep, improved digestion, and improved behavior.
One AngelMom turned the pain of watching her son suffer debilitating seizures into a passion for learning about a diet therapy that originated over 100 years ago and helped her son become seizure-free. She shares her story to inspire you and show you what is possible right now.
For more information about the resources that Lizzie has created to help you get started with diet therapy visit: https://www.angelmantoday.com/low-glycemic-index-guidebook/
She has created a Low Glycemic Index Diet Guidebook, an Epilepsy Journal, and a Digital Epilepsy Journal.
We have a Facebook group where you can learn more about diet therapy and connect with other parents.
Stacey Davis shares her story.
She started her son Tyler on diet therapy 20 years ago.
“My son Tyler has Angelman Syndrome and when he was around 11 months old he started to have myoclonic seizures that progressed into drop seizures. He was prescribed medications for treatment. He started out on Topamax, then added Keppra, and next Depakote and with this arsenal of medications he was still having 75 up to 100 drop seizures a day. At that time, we were told that he had exhausted all the pediatric seizure medications and that is when we were told about the Ketogenic diet and asked if we were willing to give it a try. Absolutely, YES! We started Tyler on the Ketogenic diet the first week of September and he was seizure-free on September 25, 2003. He was weaned off Topamax before we started the diet and he was off Keppra by 12/23/2003. Depakote was removed on April 24, 2004, and we never looked back.
Ty remained on the Ketogenic diet until January of 2007 when we made the decision to switch him to a different low-carbohydrate diet. Tyler was not having any medical issues with the diet, but he was always very hungry between meals, and we felt that if we kept him in ketosis, he should have the same benefits and he did. We started with 10-12 net carbs a day and have gradually increased them through the years and at this time he is on 25-30 net carbs a day.
In the past 20 years, he has had only a handful of drop seizures which came out of nowhere, they were isolated incidents and his last random episode was November 6, 2008.
I would like to add that I was extremely nervous about taking this (diet therapy) on and had anxiety wondering if I would be able to do this! I have no skills in the kitchen and no previous knowledge in this area. It was a lot of work and planning in the beginning, but the results made it worth everything! Eventually, it became second nature and our new normal. We did not let the diet restrict us from outings or going out to eat, we just planned, prepped, and took his meals with us. Once we made the switch to low carb it gave us more options. We didn’t always have a meal in hand when we were going out and it gave us more freedom.
I honestly believe that besides the obvious benefits of seizure control and no medications that Ty’s diet has benefitted him in many other areas such as improved behaviors, improved immune system, dental health, and overall cognition”.
