We are forever grateful for the ketogenic diet. It has truly given us our daughter back!! Reese is now a beautiful, healthy 7 year old who is such an inspiration to others.
On January 24th, 2016, at age 4, Reese had her first tonic clonic seizure. It was the scariest moment of our lives. We hoped and prayed it would be an isolated event. She soon had an EEG with a neurologist at LeBonheur children’s hospital. The EEG was abnormal. Antiepileptic medication was recommended to control seizures. As parents, we were concerned and reluctant to try medications due to side effects. We soon did because Reese had a second seizure shortly after the first. Within weeks, she was having numerous seizure types daily. We were trying multiple different seizure medications to control them, none of which was working. On her worst days, she would have up to 25 tonic clonic seizures a day. It was devastating and debilitating. We thought we were going to lose our daughter.
Reese was diagnosed with epilepsy- specifically a potentially severe and rare form, consistent with myoclonic astatic epilepsy or Doose Syndrome. As parents, we had done countless hours of research and came across the ketogenic diet for seizures. We had read various success stories and were optimistic and hopeful it could help Reese. Our doctor had also recommended it as a first line treatment for her seizure types- especially when medications were failing.
In August 2016, Reese was admitted to the hospital to begin the ketogenic diet. We had a week long stay. We had some issues early on but we did not give up! We finally got her to a 4:1 ratio in October and she was tolerating it well. For her, starting the diet slowly and working up to the 4:1 ratio is what did the trick! Within 2 days of being on this ratio, she had the life back in her eyes. She was clear headed and coherent. Not struggling in a daze. She was still on medication, but we had a weaning schedule in the works. The best thing about it- the seizures STOPPED. She had one small breakthrough tonic clonic brought on by illness early on in diet. We have not seen a single seizure since December 6, 2016. We are over a year and a half seizure free and I never thought we could possibly see this!! All thanks to this miracle of a diet and God using his healing hands working through it!!
Reese is off all medication and relying on the ketogenic diet alone! She is such a trooper. She loves her food and realizes how much it is helping her live her life and enjoy the “things”a 7 year old should enjoy. We love to travel and recently got a fifth wheel camper so we always have our kitchen with us! We are able to do these things and enjoy life because of the diet.
Reese especially enjoys the cookie and cupcake recipes and others the Charlie foundation provides. As a family, we love trying new recipes and adapting our meals to be similar to hers. We also work with a wonderful dietician, Ms Lindsay who is a big support to us.
We are forever thankful for the ketogenic diet and the caring, advocating, people with the Charlie foundation!!
With Love and Gratitude,
The Richardson family