Lizzie Sordia Shares Nathan’s Diet Therapy
I am so grateful to be able to share our story with you. It starts out probably very similar to yours. It was Nathan’s seizures that led us to his Angelman syndrome diagnosis. Over 80% of individuals with AS develop epilepsy. Nathan’s seizures were so bad and uncontrollable. He suffered cluster seizures, partial complex seizures, clonic seizures, head drops, non-convulsive status epilepticus, and seizures that did not register but I knew were happening. He lost skills, he suffered partial paralysis (Todd’s Paralysis) post-seizure twice and I was so afraid they would one day take his life. I felt it in my soul. During one hospital stay, one of his seizures felt like he was being ripped away from me, I felt sick to my stomach and my knees almost gave out. Hopefully, you will never experience this.
Multiple medications had failed him. He had suffered so much. We, as a family was suffering right along with him. I share our story with you because I learned something and did something that changed our lives.
Diet Therapy Saved my Son’s Life
Diet therapy can reduce seizures, or even completely stop them. I hope that our story will help you understand the power of food. You can harness that power to help support the health of your loved one that suffers from epilepsy. Maybe they have already been diagnosed with an irregular EEG and you would like to try to prevent seizures. Prevention is also possible.
Nathan was born in 2008. His seizures started due to illness when he was 15 months old. I had never seen anyone have a seizure before and watching my child seize made my heart free-fall into the pit of my stomach. I didn’t know what to do. Thankfully, my husband Henry was home.
He was in law enforcement and had been trained on what to do. He helped me remain calm. He held Nathan while I called 911. This was the beginning of the next few years that would include many tests and hospital visits. One year we almost didn’t make it home for Christmas because Nathan’s seizures could not be controlled.
During one visit to the hospital for Refractory epilepsy (uncontrollable seizures) Nathan was holding his breath during the seizure and turning blue. When our neurologist came to the room to evaluate Nathan, I asked about diet therapy. I did not know much about it but wondered if it was a possible treatment option since multiple medications were failing. The doctor immediately said that he did not think it was a good option. He said Nathan would have to be having more than 100 seizures a day to be considered a good candidate for the diet.
I did not know what the right answer was at that moment, but I felt that his answer was not the right one for Nathan. As I stood in that hospital room looking at my son laying there unconscious, loaded up on Ativan to try and stop his seizures, I knew we had to look for other options. What is the difference between 100 seizures and laying in a bed loaded with medications to calm his brain? This was no way to live. At that point, the only treatment option was chasing the dose or adding a new medication and that had already failed multiple times. I am not insane and this by definition is insanity. A fire was lit inside me. If the doctor wasn’t going to help me get results, I was going to find someone that would.
Change in Course
Once we were home and settled, I started researching diet therapy. The first book that I bought was called Treating Epilepsy Naturally by Patricia A. Murphy. Diving into that book, I knew I was on the right track.
My intuition was guiding me and the research, books and people were confirming it. Go with your gut. Let your God-given Mommy intuition guide you. The teachers revealed themselves as I was ready to learn. I met other mothers using diet therapy with great success and they were happy to share their experiences with me.
Once I knew that diet therapy was something I wanted to try for Nathan, I had to find the right medical team to support us. It took some time and several conversations, but I finally found the right Neurologist and Nutritionist with the experience needed to support us.
Nathan has been completely seizure-free for several years now. His sleep is much improved. His acid reflux and constipation are gone! I get to light the torch for you now!
What is Diet Therapy?
The ketogenic diet has been a proven effective treatment for epilepsy for 100 years now. Are you surprised you weren’t told about the option or the research when your child was diagnosed? I was.
The ketogenic diet is a high-fat, low-carb diet. Does it sound complicated? It will take a little time to learn as with all new things, but let me give you a sample dinner: chicken thighs, a side of broccoli drizzled with olive oil, and a half of an avocado. Portion size will be taken into consideration for each individual based on their needs. Eating real food is best. Blending real foods for those with feeding issues is also an option on the diet.
There are now several diet therapy programs available to help with epilepsy. They are; Classic Ketogenic, Modified Keto, Medium-chain triglyceride (MCT), Modified Atkins and Low Glycemic Index Treatment (LGIT).
The Low Glycemic Index Treatment was developed by Dr. Ronald Thibert, Dr. Elizabeth Thiele, and Heidi Pfeifer, RD. If those names sound familiar it is because they are also well-known experts for our loved ones with Angelman syndrome. In 2007, the Angelman Syndrome Foundation funded their study using the Low Glycemic Index Treatment on a small group of individuals with Angelman syndrome and epilepsy. The findings were significant! The diet therapy was highly effective at treating AS-related seizures. It was well tolerated by the individuals.
All of the subjects that remained on the diet had >90% seizure reduction after 1 year of being on the diet. That is incredible! I challenge you to find the statistical evidence on the medications you are currently giving.
Watching my child suffer from a seizure is heartbreaking and makes me feel helpless. At that moment, I am helpless. There is nothing I can do. But with diet therapy, each meal I get to prepare for him is helping his brain and his body fight those seizures. THIS is what I get to do for him! I prepare his food with love.
Resources and Connections
Today, I host a Facebook group called The Low Glycemic Index Treatment for Angelman Syndrome/Epilepsy, where I share information and resources. If you would like to connect with me to learn more I invite you to connect with me on Facebook or Instagram.
Nathan has been seizure-free for several years now and I am grateful for that every single day. We stopped his seizures despite his genetics.
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Lizzie Sordia is an ASF Family Resource Team member and founder of Angelman Today. Lizzie has spoken at ASF Conferences and held many webinars for the Angelman community.
See the ASF’s Diet Playlist on YouTube for videos about LGIT, Keto, Seizures and more.
Also see Seizure Resources.