Hi again. Ethan's g-tube as well as almost all type 1 children is required for them to eat because they have lost their swallowing reflex. We use the Tolerex and amino acid diet because of the extremely low muscle tone. Ethan does not have muscle mass to store protein which is then converted into an amino acid by the body for energy. Instead we dump amino acids into him which allows his muscles to work more efficiently. The g-tube is located directly in the stomach. It is literally a tube that sticks out of his belly which allows him to eat and for us to give him medicine. If he takes anything orally he may aspirate and get pneumonia.
As far as Dr. Goetting, he was never able to locate sodium butyrate. Because of this, we had to get it ourselves off the internet (doctor's health. com); it is called omega plex. Ethan has been on full dose for almost 4 days. I have not seen any dramatic improvements. The doctor in Taiwain said that they saw more positive results with type 2 children. They are doing a study and should be published sometime in the future ???? I don't know why you double dilute Tolerex. I would guess it is for volume and it's good for you. You only use just over 1 pack of Tolerex and if you only added the recommended water it would not amount to much, it may also get stuck in g-tube more easily.
I hope I have answered some of your questions. This is only my opinion and hard to substantiate with medical findings. I just watch Ethan and talk with as many parents as possible. Wish you the best. I have attached Ethan's diet. Dr. Goetting would probably read me the riot act if he knew it.
Chad Burnett