Soooo, here is what we have settled on. And when I say settle I use the term loosely. Poor Scott learns the "cocktail" just as I'm modifying something. Annie is always changing and growing and her nutrition needs to follow suit.
These are for Annie's basic nutrition: Bone supplement (for thinning bones due to rett), Multivitamin/mineral (rett causes malabsorption) and a probiotic (for proper gut flora, regularity and increased immune system)
These are for extra nutrition: a "milkshake" of Hemp milk (rich in fat, calcium and vit. D), protein powder and flax seed oil
These are meds that are given when they are necessary: suppositories (for severe constipation or impaction - rett causes poor motility and hypotonia of all muscles including the GI system), Mylanta (for breakthrough reflux and gas), and Levsin (for severe GI pain).
These are Annie's everyday meds: Buspar (rett syndrome causes severe anxiety), Zantac (for reflux - I'm not sure you can have a neurological condition without having reflux), and neurontin (for Annie's nerves that are "over-firing" and causing Annie severe pain).
These are for sleep: Melatonin (to help put Annie to sleep, we give it twice a night because rett causes severe sleep disturbances), and benedryl (to help keep Annie asleep). I really feel like Annie should be on stronger meds for sleep and we have tried some but at this point Annie has some pretty severe breathing issues and I would rather be less aggressive here then worry about Annie's breathing at night.
In addition to all the meds and supps Annie also has a whole host of medical supplies because of her g-tube. This is a typical monthly shipment:
2 types of syringes for the month, extension tubing, tube feeding bags, a new mic-key kit so we can change Annie's button (yes, if you can imagine, we have to do that), and of course the formula (we use complete pediatric)
Good thing I have 2 "forklifts" to help me get it all up the stairs and into Annie's closet!