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.

Monday, August 6, 2012

Exercise and Nutrition, for some better then Medicine

Recently I have noticed an uptick in various Mito patients taking their diet and exercise more seriously, and their efforts are either met by encouragement or defensiveness in the Mito World.


On the UMDF facebook page a Mito patient has been posting her progress and improvement by adding an exercise program. First, when I read about a patient and exercise I automatically assume that the patient is sharing what is working for him/her and not implying that other patients are sick because they are not doing the same. We have been in the trenches long enough to know, that for one patient exercise can be something as simple as brushing their own hair, or as challenging as working out at the gym each day. Reading the post I noticed a lot of encouragement toward the patient for trying something to feel better. I also noted a few posts that were definitely angry/defensive and felt it was implied that they were sick because they did not take care of their bodies.

I have read a few blogs and facebook posts where mito patients have focused on what they are eating or their child with Mito is eating. Tons of variables in diet depending on the disease process and which organs are affected. I have also read with some curiosity that some GI's are recommending previously fed by tube children to be admitted to something called "feeding clinics." At first I was horrified by the idea of separating a toddler from their parents to teach them to eat again, but now after what we have been through I can see where a few select patients it could be very helpful. When the rest of the world and our government find things like Roundup to be safe, or a can of formula with a hundred ingredients that are mostly chemically treated to be safe and healthy, it is not easy for a patient to change how they see food. Introducing chickpea nofu, millet, coconut oil,blackstrap molasses, figs just would not have happened a few years back for Abby, but it took an openness and desperation to give it a go- if there was some perfect nutrition in a can where she was thriving, I promise you, I would fight like mad to keep her on it- safer,easier,more predictable. Like breast feeding vs bottle- when you breastfeed you have no idea how many ounces they got, what exactly was in your breast milk? But a can of formula is clearly labeled with it's content, the bottle is measured in onces- it is a bit of a leap of faith to breast feed if it is your first- you don't breath until you see they have gained weight and grown at the peds office checkup.

Since both nutrition and exercise are the two area's Abby and I have focused on I have followed both topics with interest.

Within the mast communities and allergy communities there are lots of Mito patients, and many have tackled diet and exercise with some level of success. Some like Abby have experienced healing and stabilization that they could not get using medications and feeding tubes. Some have shown no improvements.

When we withdrew from trying any further medical interventions when we felt they were making matters worse instead of better, I felt pretty alone. Abby and I have talked a lot about what works and what doesn't for her. We both are feeling very grateful that Abby wasn't diagnosed with mito as a baby or toddler.. I suspect that would have significantly changed our perspectives. For us, it was an advantage to problem solve all those years because we did not know about Mito.. I had no tools, and no understanding of what was wrong and the only thing I could do was control her environment,energy, and nutrition. We saw improvement,though it took years. I wonder if at age 1 or 2 if the Drs. had suggested a feeding tube if I would have done it? Likely- at that point I really did not question medicine or Drs or status quo. At the time we thought she was just outgrowing her "undefined congenital myopathy" which was expected, until recently I did not connect what we saw at puberty with what happened to her as a baby. Nor did I ever really connect any parallels between allergies and neuromuscular until recently. When Abby got so sick at puberty again, and then we found the depletion it took me awhile this time to tackle her health the way I did when she was a baby, because Drs.and medical data was more powerful in my mind then food or environment. It wasn't until Abby got sicker with each addition of supplements, with the addition of miralax and supplemental formula's- we were absolutely terrified that whatever is wrong with Abby was progressing, and fast. My gut told me the interventions were killing her- but it took awhile before I trusted that. Though my efforts when she was a toddler were effective, now we were dealing with Mito and not Abby- or were we? I figured cleaning out the allergens might at least make her more comfortable and reduce the energy needs of her body.


I have had many days over the past 7 months where I truly thought I had lost my mind to withdraw and go back to the ABC's with Abby. Then I have had weeks where the improvements were so clearly massive I have been giddy with the success. We as a family have benefited beyond Abby's health improvements. We are all healthier. I feel like we have been empowered to take care of ourselves and not depend on Drs. for all the answers. I have learned that "fuel" is important. Through these changes I have found hundreds of patients who have similar issues as Abby, and they too have found some level of success by focusing on the minute details of nutrition.

Day to day I still wonder if this is all placebo- the mind is very powerful thing. We have lab work that proves she has improved but, is it just mind over matter? Or is it really a perfect fuel scenario?

At the end of the day, we are extremely lucky. Many children with Mito are terribly sick and need every single medical intervention to just stay alive.

What works for Abby isn't going to work for those children, but I cannot help but wonder, are there more "Abby's" out there who would benefit from tossing the twinkies and eating real fuel vs commercial chemical fuel? Though I recognize no two mito patients are alike I have been finding more patients who are benefiting from extreme diligence to their energy,diet and nutrition. I wonder if as Mito diagnostics improve, they are finding more "mildly" affected patients- and these patients have a better chance at seeing improvements...or are some or maybe many mildly or more affected mito patients have Mito secondary to another disease process? I suspect it will be another 10 years until we have answers to a lot of these questions. I hope they develop technology to create very individualized treatment plans- to have targeted treatment for each patient and not just mutation would be ideal for Abby.

My big question is, will this last for Abby? Or will another issue come up eventually that I cannot help her with by tweaking her nutrition,energy, and environment? If I base an educated guess on the current medical literature, this isn't going to work forever. Yet, if I base my question on Abby's history, she stands a good chance at being stable for a long time.

Last week Abby woke up in full flare mode.. edema,irritated, insomnia,painful muscle and joints,dysautonomia, GI issues- For more then a moment I felt panic. We traced back her diet and found she had been corn contaminated, had eaten too much protein, and suddenly developed a sensitivity to salt,where before she could not get enough. It has taken a week, but we tweaked and analyzed the data and yesterday saw good improvements. Still a bit off today, and so very tired but sleeping well and the GI is settled and her mind is clear again. So this flare we figured out again, but how many more are coming our way? How long can we live cooking everything from scratch, changing gears at a drop of a pin, living this extremely different from the rest of the world is not easy. I think though, as long as I can see that she is stable or showing improvement, or that we can tweak her out of a flare, we can do it forever. I still haven't figured out how to get all the nutrition into her that she needs, she needs more protein in a bad way.. for now we are waiting and trying to be patient that she is still healing. Placebo or physical need? I remind myself daily that for now it doesn't matter.

2 comments:

theprogressivepatient said...

It was nice to see your comment on my blog! It is so important to listen to our bodies and learn what works for US. The "catch all" treatments that doctors try to pass out often leave patients with more problems than they went in with!

Circus of 6 said...

I understand your thoughts completely. We had a decision to make years ago for myself and the kids...eat a western diet and take boatloads of medications to feel okay... or change what we eat and our environment and feel alive. We chose the latter because at that point I had handled all our health stuff anyway as we were shunned by Drs. Your a momma and I believe you will continue until you are no longer capable. I totally understand the overwhelming logistics of making everything by hand... but in the end it is worth it :) Both your girls are very blessed to have you as a momma!!!

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