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 7, 2012

The Preventative Protocol

Over the past year of chatting with various parents with kids "suspected" of having Mito or those with more "mild" presentations we all dream of the "Preventative Protocol".

A few of us have had issue with the Mito Protocol or found that current trends in the Mito Population potentially cause more harm then good in "our" group of kids.

All of us tend to see any intervention as something that can just as likely cause harm as good. Many of us had children that were clearly symptomatic but not enough that current Mito medicine either could or would diagnose. What if there was a Protocol these concerned parents could follow? To even reduce the risk of brown outs, or flares, or triggering a full progression? Something for those parents who "know" there is an issue but eludes current trends in diagnostics?

I think about it almost daily, that had anyone told us before puberty that Abby has some sort of disease of energy(not just a congenital myopathy), we would have done so much differently. I know that we could have prevented at least a few of her collateral conditions- if we had just known. I don't think I could have "prevented" her getting a depletion or whatever her primary condition turns out to be,but I certainly could have done things differently and prevented some of the damage from not being told about Mito.

Makes us all SCREAM!!! The Motto of American Drs. is Preventive Medicine. You cannot turn on the news or flip through a magazine without seeing something about how Preventative Medicine is so important to our health. Except when it comes to Mito, Autism.. etc. Where is the preventive medicine for our population?

Actually it is kind of there. Sort of.. here is my opinion as to what should be on that Preventive Protocol for Mito.(Not medical advice, just a Mom of a sick kid) They are bits of advice I have heard over the last couple years. Some I followed, some I got the opposite medical advice. Some I wish I had followed.

1)No medications, immunizations during pregnancy.

2)Breastfeed.(Or pump if nursing is impossible) For as long as you can. No junk food,chemicals etc while nursing.

3)Low allergen(extra attention to met nutritional needs) and GMO free diet during pregnancy,while nursing and during early childhood.

4)Delayed vaccines.(I did not say NO immunizations, just delayed until at least age 5)

5)Hydration, hydration, hydration.

6)Extra attention to rest. DO NOT ever drag them around when sick or in a flare of odd metabolic minor symptoms. That little snotty nose that doesn't slow other little one's down, can cause a major metabolic crisis. Preserve energy when the immune system is taxed. No pushing them when they show fatigue,illness,or soft signs. Anything can wait or be rescheduled.

7)Keep hunting for "Why is my baby not normal?" No easy task. We have all been faced with a Dr. that rolls their eyes, or less then politely tells you to quit wasting their time.. but, again had I known with Abby before puberty? We could have prevented at least some of the damage.

8)Find a really really good Pediatrician or Family Dr.(We prefer family medicine and always have). Please find one that "gets" that your baby needs more TLC. Find one that see's you as the expert and listens. These are rare, so when you find one consider yourself lucky.


10) Environment- household pollution. Pesticides,fungicides,fertilizers, sizing etc. We are swimming daily in a stew of chemicals with vulnerable babies. Minimize those stressors in the home because you cannot avoid them in the rest of the US.

Of course this is just my opinion- not a Dr nor medical advice.. but I know a lot of Mito families(and Autism families) follow some variable of this list after diagnosis, why not before? Many of us will tell you our children had "soft signs" for years before they were taken seriously and investigated and usually not diagnosed until the symptoms and damage were requiring hospitalization and were permanent.

I don't know nor do I think that these efforts would "prevent" Mito or Autism. But, a good start to at least try something instead of waiting around for it to get worse. Just maybe it would slow things down.. or reduce the risks of progression? Maybe prevent a few collateral/secondary conditions from burning out their energy.

In the Autism population removing allergens like gluten,corn,dairy, soy and chemicals has been very helpful for reducing symptoms in some. Since we have found a connection between autism and Mito(for some)- wouldn't it make sense that we would benefit from their hard earned knowledge? The Drs. are finally acknowledging that removing these allergens even without allergies seems to cut some Autistic children's body some slack- why not give it a whirl? Easier to digest and metabolize means less energy required to absorb optimal nutrition.

I am so glad that Mito is at least being recognized faster now. A couple of years instead of 10,20 or more to get diagnosed. I realize that there simply aren't enough Drs. who acknowledge that Mito exists to treat everyone. Just like Income should determine who gets government freebies, the profoundly affected simply need more care. However, for all those parents getting the blow off, or too mild to qualify for research, or too mild to need medical interventions, how about a "How to avoid getting worse" printout? How about a "right now, Mito medicine is not able to recognize mild cases, but we believe in preventive care. Here are some common sense things to do for your child if you are worried they are showing soft signs of Mito."

Piece of cake right? No. But what about raising a child is easy?


Laura said...


We started treating Will's behaviors and health issues nutritionally ( just mama'a instinct ) and he is in a far better place health wise today. I have two metabolic tests, done 5 years apart. The first showed his system was a mess - nothing worked right. 5 years later, the second one showed all but one are of the kreb's cycle working normally. I asked Dr. Frye about the two tests and if the change could be the result of the nutritional support we had been doing for 5 years. He stated that is was likely and that you cannot start treating too soon with mito patients. We were lucky, because we did not even know we were treating mito. He will always have symptoms, but I often wonder, if I had not followed my gut, if I had listened to the pediatrician and given him laxatives and ritalin, instead of changing his diet and adding dr. prescribed nutrients, what he would be like today?
Would he be the nearly normal teen who, while he has some health issues, they do not control avery aspect of his life? I thank God every day that I follwed my gut!

Diane said...

:-) You are a very good example! I always wonder if there are other's out there like your's and mine, whose parents just follow the medication route and their kids get worse because of it.. and the Drs. and parents just believe it is all disease process but don't consider it could be medicine,environment etc speeding up the process? I know if I had not have listened to smart parents like you and many others last year, Abby would be violently damaged at this point- every medication added was adding to the snowball affect- once we listened to our "guts" she started healing..not cured, not worse, and even gaining a little ground!
Big Hugs!

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