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, July 17, 2012

No Facts...

The other day I was on the phone with a Mito mom and the conversation lead to fundraising vs awareness. I really dislike fundraising- I avoided the PTA's Moms and Room Mom's like the plague during the few years Sara and Abby attended Public School so my opinion might be a bit tainted! :-) I lean toward "awareness" vs fundraising, but run into problems with the awareness- I am finding the facts change overnight about Mito and when I say "a disease of energy" I get the oh," chronic fatigue right?" For Abby kind of sort of sometimes.. but not the right description.

Blood tests- the list changes, the levels of what normal and what is not changes, nDNA, mtDNA,primary,secondary, related disorders...

It gets confusing. Really confusing.

Even the gold standard Muscle biopsy has no absolutes- might show something, and might not..Or maybe what they found in Abby's is a false positive? That happens and false negatives happen too. See, that is how my mind works- I really am not comfortable with this mito junk- but I fit very comfortably in the world of allergies- I "get" allergies and I can actually help Abby without dealing with any Drs at this point beyond our family Dr and Abby's Mito Specialist. A clear "cause and effect" with allergies, eat dairy you get sick- thus the treatment- don't eat dairy! But Mito? The answers we get are so flexible they really aren't answers.. I cannot do much for her "mito" issues.. therefore, my mind grabs hold of the last biopsy results and starts wondering if it was just bad results..

So with all that crazy making going on in my head, How do I describe Mito? Not just Abby's Mito- or Sam's or Libby's, or Dave's or Dale's, etc.. but how do I possibly just spit facts, about Mito? Really there aren't any hard and set facts except that it messes with the Mitochondria.. that is about it, after that, anything goes! I have actually tried that explanation out on folks before, no one automatically opened their wallet, but I got the raised eyebrow like, is she pulling my leg kind of response..

Just a few years ago, Drs. only thought Mito existed in the most severe presentations(and most Drs beyond Mito specialists often still think the same thing)babies and toddlers would go into a tailspin and that was it. Now that they know better and safer treatments these kids are more frequently living into adulthood. I am now hearing stories of children who were given the worst prognosis becoming almost "normal" and "healthy" with the proper interventions- clearly progress is being made.

Just a few years ago, depletions were only found in the most severe cases and the survival rate for depletions was scary low- but now they are finding lots of "Abby's" who are more mild, and though they have to live differently, it isn't killing them.

But is sharing about Abby when I share awareness doing any other symptom population within the Mito sphere any good? She looks pretty normal. On a good day, you would not look twice at her. We can hide most of her "mito".

Starting to think that the fundraising is the much easier option- get people to give money and let the Professionals figure it out. But, how do I explain Mito to get people to give money? It really is almost unbelievable to say," It is a disease that looks like every disease, can cause all sorts of diseases and could be anything from your hearing to your bones" I cannot imagine that line getting anyone to open their checkbooks either! LOL

No wonder I feel so lost in all of this.. and my brain is often left running in circles.

Abby and I often chat about this whole process. We both agree that we did what we had to do in order to get a diagnosis. She doesn't regret it so I don't either. But what gets both of us are all the "little Abby's" that are out there.. little ones who are off a bit like Abby was and whose parents desperately want to know what is making their babies sick, but constantly get the brush off. So many have even done the biopsy and not gotten results, and in the medical world, symptoms without lab proof will get you no where- a rare Dr. now again will try to help, but they aren't usually the specialists that could be helping the most. Even in the Mito World I have noted the great divide- Families are separating into those with "proof" and excluding those who are only "suspected." It breaks our hearts because we have been there. Trying to get any help at the Public School without a diagnosis? Mission impossible. Trying to get family and friends to accept there is something wrong without a diagnosis? Impossible. My biggest regrets are about not pushing hard years ago for a clearer diagnosis. Without a diagnosis we did what the Drs. felt we needed to do- I still am kicking myself over that last year in High School where we pushed her.. She was so sick.. and I watched her get sicker and sicker and still pushed- because without a diagnosis that is what they recommend. I am certain that year is what caused the kidney crash.. that caused her to not be able to come back out on top and bounce back. The only thing good that came out of pushing her because she had no diagnosis? Was that it broke her so badly that the Specialists begrudgingly finally agreed with us that there was a problem- that in itself ticks me off, where the heck is preventative medicine? First do no harm? Clearly many in the medical world don't listen to parents..

Now, before you think I am just being ugly, I know that thousands of families go through this same ordeal- just talk to any family who has dealt with a rare disorder. Especially if it is an "invisible" one, meaning one that won't pop up on any of the Drs. labs- I swear you could be seizing on the floor in front of some Drs but if the tests don't show a cause you don't need treatment! UGH! It isn't the Dr.s fault, it is the way that our Medical system has established- we have amazing medicine here in the US, but it seems the "whole body" approach you can find in other Countries isn't applied here- I get that the system is set up to serve as many as possible and it is simply impossible to serve everyone, but boy is it frustrating! I truly believe that most Drs. want to help but they also have been taught and taught again by Medical School, by malpractice insurance,by negotiated insurance rates, that they must follow the rule book, even if that means 10 percent who need help, get no help.

Years ago when the girls were in Public School and it was clear that the gifted programming was minimal to say the least I decided to get involved. It was implied that if I wasn't working with the team to find a solution I really had no right to complain-fair enough. I attended the meetings, I was even invited to sit in and be on the board for the District GT planning boards.. I will never forget when the Director of the program fussed me. He said it was a process, it took time to develop a good GT program and to get funding,facts and cooperation. I asked how long- he said it would be 5 years and then my girls would have a great program- I was stunned- Seriously? you want me to leave my girls in a program for 5 years that does NOTHING to support them academically? Plus, you want me to fundraise and follow you blindly while I let my girls rot? Talk about a serious dash of reality. I pulled them from Public School that week. Kind of rash huh? But some sort of survival instinct kicked in, that Mama Bear in me. No one I knew home schooled. My friends and family thought I was nuts. Kids that my girls were friends with cut them off.. The price I paid to make sure that their academic passion was allowed to blossom was earth shattering. Those feelings of being completely lost and pushing forward with zero support have shaped nearly everything about me at this point. Despite the enormous price I paid socially and the girls paid socially, all of us now look back and are truly proud we made the choices we did, nothing good comes without a price.

6 months ago, when Abby started getting so sick, I was faced with a deja vue moment- I knew that there wasn't anything that the professionals could do for Abby- like the badly created GT program that was hurting their academic passion, the Mito protocol was just as bad of a fit for Abby. I yanked her out, and went it alone again. I am still sweating a lot over that decision. Again faced with feeling like I just took such a leap of faith and really a level of arrogance on my part that Abby and I could do it better then what was offered by the Pro's. I really felt like I was pushing my luck, but what choice did I have? We KNEW the Mito protocols would hurt her, and that was all the Medical Pro's could offer- why keep going to them and saying No thanks?

Today we again have felt some of that isolation and alienation- not just from the Mito World but from friends,family- Those friends and family who weathered the Project Home School with us and saw it was the right choice have asked me," What took you so long?" LOL They know when it comes to the girls my gut rules- even if it seems like crazy, chancy, and not socially accepted choice. Thank goodness I am not a gambler- I would be one of those to start the night with 5 bucks and get to a million in winnings and bet it all on a gut feeling that I would win against the odds.

Today I can clearly see the improvement in Abby. So can everyone else. I would like to think it is Project Elimination.. Some would like to think it a fluke.. but everyone is right with their opinion about what we are doing, because Mito for Abby has no facts- Maybe our Project Elimination means that her biopsy results were incorrect, or maybe our Project Elimination means that there are more ways to help a Mito patient then just the Mito protocol.. no facts yet though.

Abby is still sick. She is gobs better, but hasn't left the house in weeks. I don't know if Project Elimination is going to do much more for her..but it did make us feel a lot more hopeful that we can help her. It was the right choice at that moment, that is a fact. I still have my doubts or denial that Mito has caused all of this, but that is because there just aren't many facts on Mito.. Maybe in 5? or 10 years they will establish some hard fast rules? A quick blood test that will either show the biopsy was wrong or right.. but for now we just have to prepare for the curve ball. Maybe they will have discovered 10 more new diseases that could be responsible, or just maybe a cure.. but we have to do our best until then, just not enough facts yet to make a prognosis.


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