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.

Saturday, January 5, 2013

Placebo- What if they say it is Mito, and it isn't?

What if you are told your child has Mito- and 5 years later- you find out they don't?

When Abby at 18 months was diagnosed with IFSH - our world stopped. Despite being young, I understood that IFSH was terminal. That like Leigh's or many other progressive diseases it would have destroyed her.

I got to admit, we spoiled her rotten. Already I am a parent that believes all children cry for a reason and need massive attention(some folks call this spoiled)- so thinking she was dying, well talk about a heavy dose of naughty! ..

Derek said "She doesn't have it, she will be fine.". That is it, no talking about it, no questions.. he flat out knew she did not have it. I remember my "gut" agreed with him absolutely and completely. Our well meaning PT's and Drs. kept telling me that "gut" was simply denial and everyone feels that way.. Both Derek and I could see certain changes in Abby that seemed "good" to us, so we pushed forward believing they were wrong- What if we both accepted she was going to die so young? Would I have thrown in the towel and given up on PT,OT, Sp. Would I have stopped finding new Drs. to look at her and "make sure" that is what she had? Would I have stopped reading journals, websites etc to find what was "really wrong with Abby?
Is it possible if I had seen her as a baby that was dying instead of getting better, would it have changed the outcome?

Who do you believe? Yourself and husband and your instincts or these super educated medical personnel..

By the time Abby was age 4 I knew Derek was right- and that was when I started to trust my "gut", that sometimes modern medicine gets ahead of it's self.

This is why having an ABSOLUTE gene and/or second(third or fourth...) opinion is so important.

Even with the same mutation the prognosis can be very different. Even with Leigh's there are huge variables between patients..

Abby is a "fader" with her issues.. no drama and no runs to the ER- Never acute. Some patients are all acute- but live fairly normally with school, social etc but spend a few acute flares a year in the Hospital..

After all the changes in Abby's diagnose's, I guess I am a bit skeptical about prognosis etc since nothing sticks to Abby.

My Grandmother lived to 86(somewhere in there, she never was honest about her age). She had 98 degree scoliosis. She had cancer a number of times, she had heart issues, She actually had spinal bifida that was closed but still was repaired(HUGE deal back then.) She also had to have what they thought were parts of a twin removed from a large swelling on her neck- and a huge list of other health issues yet, she lived. From family stories, she was always the weakling.. the sick one. We actually have a lot of slow to walk, slow to talk, uncoordinated people that live to ripe old ages. We also have a lot that die very young from the common "heart disease" "cancer.".

We love that commercial for the Cancer Centers.. The patient with Pancreas cancer said the specialist told her he did not find an expiration date anywhere on her body.

So maybe I have a different take on all of this, but one thing I am absolutely confident about is that with Mito there are no absolutes. Things can be fine and go sour, or things can be awful and get much better.

We got Abby's nDNA back, as predicted nothing in particular popped up. Since only 20 percent of Mitochondrial depletions have a known mutation we were not terribly surprised. Frankly, I was relieved. It means we are taking the right journey, that we should keep looking. It might mean I am right, the depletion is secondary, now to find the primary.

That first scare when Abby was a baby was a powerful lesson. The placebo effect is real. Our realities can be changed and sometimes by simply how we see our reality.


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