WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Tuesday, April 17, 2012

Another piece of the Pie. Maybe two pieces....

For the last 2 years I have really struggled to accept this "Mito" diagnosis. Partially for the obvious which is no one wants this diagnosis, but mostly because Abby just doesn't fit the "Mito" pie. Well, she does in some ways. The severe fatigue, the loosey goosey joints, the hypotonia,a few other symptoms that I always think "myopathy" when I run through them in my head. But, no ER trips,no meds,no tubes,no trauma..where so many seem to NEED massive amounts of interventions and constant Specialist care, Abby does better without all that. In fact, if we do medical interventions it just quickly leads to more interventions.. She has a whole slew of significant symptoms that just don't fit in the Mito World. I usually associate all of those symptoms with really odd ball allergies..Not to mention the surprise that registered on her specialists faces when they heard about the depletion results... and no one has yet been able to give me the "big picture" the missing slices of pie that would "Tell me Why?." Telling me it is genetic- doesn't answer anything. Telling me we will eventually find an nDNA responsible doesn't change the fact that she doesn't have any known depletion nDNA mutation..add to that the fact she is such an original in the mito world leaves too many wide open doors for me. The vast majority of Depletion patients that are Abby's age are in much worse shape even with the same amount of Mitochondria. I need absolutes and besides the depletion finding on the biopsy Abby has none. Which means I keep searching.

A couple days ago a nice group of Mast Cell disease families allowed me to join their groups- within minutes of reading their stories all those lightbulbs started flashing!

They spoke "Abby" and walked Abby style! Phrases like " if they eat something for a few days, they will suddenly react to it" "POTS and Dysautonomia" "cannot tolerate any vitamins,supplements or meds" "severe fatigue" "counting spoons" ... "weird triggers"...joint pain, rotating allergic reactions,histamines... In less then 10 minutes I felt like I was reading about Abby's entire life.. For the first time in 17 years, I was with a group of people who not only had been on a similar journey themselves or with their children, but folks who are all asking "Tell me WHY?"

It fits so well. Now to find a Specialist willing to confirm the Mom hunch and add another slice to Abby's pie.

My brain keeps asking " What came first, the Chicken or the Egg?" Because we just don't know everything about Mito, it leaves a lot of doors open for me to look for connections. Abby's first symptom was hypotonia, but the second was allergies. Could a severe mast cell disorder cause a depletion? Seems within reason to my non science brain- after all medications can... HIV can... so why not Mast Cells? The Myopathy part of the pie fits okay with our family- we have lots of slow walkers, slow to reach milestones, hypotonia and loosey goosey joints in the family tree- difference is, they all outgrew it and did not get worse like Abby did at puberty. We also have a lot of family with some serious, weird and scary allergies. Could the two have met in Abby and caused this unique set of symptoms? Or does she simply have both of the disorders?

Enzymes,supplements,minerals,histamines,genetics,allergies,nutrition, all little slices of pie we are adding to Abby's pie plate, eventually we will fill in all the slices and have our answers. Answers may possibly lead to ways to make Abby feel better.


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