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, October 26, 2012

The Bounce

Abby looks so much better today and has the "wobbly legs" which are actually a good sign for her. Once we hit the wobbly legs it ALWAYS means she is bouncing.


5 day turn around is pretty terrific. Though I sure wish we could figure out "what" causes these random flares, at least we know what to do to cut them as short as possible.


Her stomach was doing much better yesterday, and this morning it is almost normal. We are still being cautious and she is only eating her safest foods for a few more days. By next week she should be able to eat her full diet again.


I suspect a sinus infection since the rest of us having been fighting them, the weed count was high and that always seems to bring on sinus junk.


Last year, I would have run her into the Dr at the first sign of fever or green snot, after all they say infections need to be addressed ASAP in the Mito populations- last time she took an antibiotic for an infection we shut down her gut and Project Elimination was born.

This year I am smarter- For Abby, antibiotics are NOT a good first, or even second line option. Gutting out a minor infection is a much safer option for her. Research indicates we take too many antibiotics in general, I suspect in the Mito population way too many antibiotics are used, simply because what else can you do?

Of course the fact that the Mito Protocol causes more harm then good in Abby always makes me wonder what Abby's Primary issue is that caused the depletion? Because if this was all just Mito, then why does the Mito Protocol hurt her worse then help?


Which leads me to wonder, Are there other patients diagnosed with "mitochondrial disorders" that are being hurt by blindly following the Mitochondrial Protocol? Maybe antibiotics causing more stomach issues? Cocktail causing bad reactions? Above all else I have learned this year, each Mito patient is unique. Just because it works for Abby, doesn't mean it will work for you, and just because a Mito Dr. says to do something, doesn't make it the best choice either. It is a very unknown disease process.. hoping they figure it out soon, so each individual gets appropriate treatment- one size doesn't fit all.

3 comments:

Reagan Leigh said...

Here is my two cents... Reagan had been under anesthesia many times before she was diagnosed with mito. She had never had one single problem with anesthesia until she had a muscle biopsy to check for mito and they used the modified mito anesthesia protocol on her. It took her hours upon hours to wake up after anesthesia and two days later she started throwing up and basically never stopped! That's when she got a G tube, then a GJ tube, and that was the start of all of her nausea and vomiting issues!

Diane said...

You know I had heard a similar story for another parent last year- It really bothers me that so many families aren't learning from the stories like yours and mine and many others,that they need to ask the questions. It stinks that some Mito Drs. "assume" the protocol is ideal for all Mito patients- it is NOT. So sorry about Reagan.. it makes me so angry! Maybe like Abby her tummy will eventually heal a bit.. when they are doing all that growing at her age, it doesn't leave them much energy to heal damage- she is often in our thoughts.

Kristy Williams said...

So true! One size most definitely does not fit all. Too many docs think textbook and so many of us don't fit that mold. I'm so grateful that I have the brass to ask questions and get more than one opinion if needed! We are constantly weighing benefit vs. risk. I don't take anything at face value and earned the label of having trust issues! Hope Abby and Reagan feel better soon. BTW both my kids are sick this week and we haven't been to a doc. It's a head cold and they both have a horrible time with meds.

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