I imagine you are about at wits end. I refreshed my memory of just what PA is, also why and how it works. PA (propionic acidemia) is in a family of genetically perpetrated metabolic disorders called organic acid oxidation disorders. In particular, propionic acid is normally digested by the liver as part of a chain of sequences where the liver produces useful nutrients. Digestion for the most part breaks foods down to amino acids from which the liver re-forms into useful metabolites used to fuel your cell's engine. The liver utlizes a sequence of DNA borrowed from the chromosomes to run the chain of sequences, but the DNA instructions have a break in the chain, essentially stopping the process. The instruction link is missing or garbled such that propionic acid, essentially worthless to metabolism, is produced alongside a couple byproducts also toxic and unusable as the propionic acid. Unless a related genetic disease turns up something, a "cure" is highly unlikely.
You're signature choice tells me you are a person of faith. Your post tells me you are under the care of a wholistic doctor, which often begins with leap of faith. Conventionally, you would be seeing a metabolic dissorder specialist. Unless you have found a leading specialist and exhausted all measures with him or her, consider a leap that direction, starting right now. I have some contacts that could shorten the search for a leading metabolic disorder specialist.
Your daughter has had PA from birth, she didn't just catch it. Going gluten free is not your most important strategy. Starting with gluten, it is a vegetable protein and proteins starting with meats and fish, then dairy, then nut meats, low protein grains, onto starchy and low protein veggies. I can't recall where sugars fit in, but total elimination of proteins is just as bad as too much. The body is remarkable. Other non PA processes will barely produce the Creb metabolites otherwise stopped. Almost all foods produce the missing enzyme to oxidize propionic acid. In many cases the gene is not completely worthless. A style of eating akin to grazing, or rather nibbling throughout the day on starchy low protein veggies is a sustainable lifestyle. Depending on her severity, PA can be managed. This genetic disorder directly interferes with absolutely vital metabolic fuel. A hamburger could terminally damage her liver, kidneys and brain. You donMt need somebody spraying a colloidal silver inhalant in her lungs. A top Naturpathic MD is out of her or his depth treating PA. This is one time you need a metabolic biochemist who before or after, became an MD. I have great admiration for wholistic medicine and the MD's who learned, proven or discredited the many tendrils of this medical practice. Forty some years ago, I subscribed, heck I jumped in with both feet. Older and a little wiser I utilize my Naturepathic MD as I do my neurologist or GI specialist etc. You don't go to a pharmacist during a heart attack.
