Danny - son with Pontine glioma - need some advice

[Elonna]

John,

Yes. Start him out at 1/8 tsp for 3 to 4 weeks depending on how you feel he is doing with the change in formula. After this period, give him in between the 1/8 and 1/4 tsp for 3 to 4 weeks again depending upon how he is doing. Then move him up to the full 1/4 tsp and stay there. Expect him to have a tired spell again and most likely be more tired than he ever was on #23.

Additionally, #50 is taken 4 times a day on a regular basis. Power dosing is done 7 times a day at every 3 hours from the first dose in the morning to the last dose at night. Then one should sleep for 6 hours without taking a dose of Protocel during that time. However, I would not try a power dosing session with him until you have him on the 1/4 tsp and you feel he is stable. Because his tumor is in the brain stem we especially don't want to overload this area with waste. Also he would need to increase his water during this time up to 1/2 gallon of water per day during the power dosing days and for 2-3 days afterward.