It is the 8th annual worldwide Feeding Tube Awareness Week!
In order to raise some positive awareness, I thought I would share with you our feeding tube journey with Sayla. We get a lot of questions regarding her tube, especially from children. We hear questions like, “What is that?” “Does it hurt?” “Can she have chocolate milk in it?” “Why can’t she eat with her mouth?” We love answering questions and want to educate others as much as we can.
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.
