Sayla is a keto kid again! She was admitted to Cincinnati Children’s Medical Center November 14- 16 to initiate the ketogenic diet. This diet is a special high fat and low carb diet, designed to help control seizure activity in those suffering from epilepsy. Sayla was started on this diet at age 16 months for the first time at Children’s Hospital of Philadelphia for a type of epilepsy called infantile spasms. It took the diet approximately three months to stop these types of seizures. We kept Sayla on the diet for four and a half years, then decided to wean her off since she was having issues with high cholesterol. Unfortunately, Sayla developed a new seizure type this past August, that is spasm-like and causes her heart rate and breathing rate to increase for about 30-45 seconds at a time. She would have these spasms anywhere from once a day to one an hour. Instead of increasing her current seizure medication doses or adding a new one, we decided to go back on the ketogenic diet, and will continue to pray for seizure control once again.
This diet mimics fasting, and when the body burns fat (whether ingested or fat stores) the byproduct of this metabolism are ketones. Somehow ketones have an inhibitory effect on seizure activity in the brain. Since there are hardly any carbs ingested, the body burns all of this fat for fuel. Fasting was used as a means of seizure control in ancient Greek and Chinese cultures. It is even mentioned in the Bible when the disciples asked Jesus how to heal the boy of his fits. “29 Jesus replied, “This kind can be cast out only by prayer and fasting.” Mark 9:29 We have to check her blood glucose daily to monitor for hypoglycemia, check blood ketones and urine ketones to make sure she remains in ketosis, and check her urine specific gravity to assess for dehydration. I have found a spreadsheet is the best way to keep track of all of these results/stats…cause, duh, who doesn’t love a good spreadsheet?! We mix her g-tube keto-cal formula daily with water using a gram scale. The process of managing the diet is somewhat labor intensive, but nothing compared to those parents fixing meals for their keto kids daily…kudos to them for real.
Good news alert: In the past two weeks, we have not seen a single spasm-type seizure! It took seven weeks being on the diet for the seizures to stop. She is still having a few partial focal seizures, but we are working closely with her neurologist to try and control these. We are so grateful Sayla is free of these spasms. No matter how many times we see her seize, it never gets easier to witness, and continues to be painful watching our child suffer. She fills us with joy daily with her beautiful smile, and reminds us to be grateful for our blessings, whether big or small.
