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.

Friday, December 21, 2012

Mito and Nutrition

I try to stay caught up on the latest UMDF and MitoAction news- I am always hoping to learn something I can apply to Abby.


The other day I read the UMDF Newsletter and saw that they are going to cover Nutrition during the 2013 conference.


My first reaction was Joy! Yippeee! This certainly is our focus and that of so many other Mito families. Then I started thinking about the likely "watered down" information and I got a little frustrated..then I could not but envision a nutritionist talking with a pile of bottles of synthetic vitamins and cans of supplemental formula in front of her and suddenly I started thinking maybe I am not going to like their advice! LOL


Totally not fair or realistic of me. Abby is unique. I really do realize that for many many Mito families whether you feed them McD's or supplemental formula or fresh and clean, it simply isn't going to help. I really do get that, but nutrition counts from if anything a calorie standpoint. Patients with Mito seem to digest and metabolize food so differently it certainly is a critical subject.

I really hope though, they approach nutrition from an "individual" need. Nutrition in Mito patients is so incredibly individual and if they try to make a one size fits all protocol for food I might just hit the meltdown point.

So I am going to hope that they break nutrition down as very individual. That some Mito patients struggle with mast, allergies,slow digestion,EoE,FPIES, and intolerances(and thousands of other GI issues)and need to spend a great deal of time trying various foods that are easy to digest, and healthy. It takes a lot of thought to find the right foods to met their nutritional needs.

That they will also cover the different types of supplemental formula's and which ones are best for what- when to use them(what exactly is in those medical cans). At what point in the disease process should tubes be considered, when to remove tubes, feeding therapies and clinics..the positives and negatives.

My whole interest in GMO, chemicals, preservatives, allergies and sensitivities in our population is not likely to be addressed- I get it. Admittedly, we have taken a more extreme approach. But wouldn't it be nice? Abby has improved vastly by taking her super highly sensitive body into account when considering food.. I know there are other families like us out there... would be nice right?


Abby is bouncing nicely. A good hair washing, and bedroom scrub down, another day of solid restorative sleep and she was "right as rain" last night. :-) Whew! I swear I am going to build a decontamination room we go through to get sanitized before entering the house :-) It is really a HUGE relief to see her bounce back.. for a few days there, I had to reflect that maybe I had lost my mind with this Project Elimination- Nope still working. Nice to see the easy smile and sparkle back. I figure she will need more sleep and more protein for a few more days and then we will settle back into "normal."


4 comments:

Laura Cox said...

Wonderful to hear Abby is better! Wishing her the healthiest new year yet...

I know what you mean by one size fits all approach. I had to demand that Will's asthma be treated differently due to his sensitivity to steroids. Every appt they still try to get us to try different versions of the same thing - inhaled steroids - but I just can't agree to give him something that has the potential to make him sick and/or destroy his kidneys. Last year when I obtained a copy of all of his medical records to date, I noticed they said I was non-compliant. I wish there was a way for me to insert that they are being rigid and obtuse!
Will is slowly beginning to realize that if he wants to be an athlete ( his dream right now is to be a Major League Baseball Player) he will have to take care of his body and pay attention to his mitochondria.
Just found out his latest blood work shows him to be low in Carnitine. Dr. wanted to add in carnitine supp, but I had to remind him that the last time it gave him double vision and headaches, even on the lowest doses. I told him I am willing to try a low dose again ( it has been a few years) because maybe we have done enough detoxing and improving health in other areas to enable him to tolerate the carnitine and derive benefit from it, but have not heard back yet.
Wishing ya'll a very Merry and Healthy Christmas and New Year!!
Laura

Diane said...

Oh Laura- doesn't it just burn you? "Non- Compliant" really means "Mom knows more then we do and it ticks us off!" :-)

I know what you mean though- so many Drs. simply do medicine via some rule book-they are not capable of thinking and for a field that claims our brightest it is shocking. They will insist on doing harm despite their oath not to.. because they are taught NOT to think outside the box.

The asthma thing is sooooo aggravating! Abby too cannot have steroids - it seems to be the drug of choice for non-thinking Drs. Sigh.

Hummm I really hope the carnitine works without reactions. It would help with his endurance and getting him toward achieving his dream! Fingers crossed his system is clean enough to tolerate even baby doses- let me know how it goes! This spring I hope maybe Abby will feel up to attending one of his games and cheering him on!

So glad Will is learning to "care for" his unique body! That really has been why Abby has done well, because we let her lead the charge! :-)

This past year, her family Dr. wanted her to write him what she needed from him as far as medical approach to her health issues- she was very articulate that she needed a "partner" in her health and someone who trusted that she knows her body- it was terrific to see her take the reins.

Wishing you the very best for 2013 and hope your Christmas is terrific! and no colds!

Hugs!

Laura Cox said...

Sometimes we play over at Baseball USA, just off I-10E and the Beltway. I will drop a line this Spring when the weather is nice....

That is great Abby is taking charge. It will empower her to soar on the good days and endure the bad ones. Will still doesn't like to talk about his health much, it embarrasses him ( age 14! - everything is embarrassing, including me!), but he is becoming more accepting of it.

Laura

Anonymous said...

Laura....I like what you said..but I think you made a mistake....what it is, is a matter of religion....they think they are God and I disagree!!!

Last year when I obtained a copy of all of his medical records to date, I noticed they said I was non-compliant. I wish there was a way for me to insert that they are being rigid and obtuse!

Aliyanna

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