Long Term Maintenance
It has been three weeks of dosing Isa with pills instead of liquids through her port. Pills that she has now learned to swallow. (I worry that this will make it easier for her to transition into illegal pill consumption in later years.) Because her pills are to be taken on an empty stomach and not following citrus or dairy, I wake her up to give them. So many times the girls go directly to bed after dinner that giving the dose just before bedtime doesn’t work.
Currently the doctor has Isa on a 50% dosage. Considering that she went through two months of consolidation, and two delayed intensives, he decided this course of action based on his years of experience. Additionally, Isa has no allegiance to any study so veering away from the protocol only affects her, not some researchers study.
Her hair is still gone, her appetite is up, and her energy level is on par with her sister’s. What we’re having the most trouble with, is the typically four-year old antics of “me too!” and the gamut of misbehaviors like, screaming when told no, faking pain, fatigue or coldness when asked for a chore to be completed.
Lont-term maintenance has ups and downs. But one of the ups is that we get closer to being off treatment.