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Wednesday, May 15, 2013

Blog Reading.

One of the first things I did when the discussion even came up about a potential Mito diagnosis was start reading Mito Blogs.


First thing I noticed was that Abby wasn't the same as most mito patients who blogged or whose families blogged about them.

Then I figured that since Abby would be considered more "mild" perhaps those who were more mild just didn't blog.

Since then I have found a lot of mild patients, some like Abby who "fade" and lots of acute patients who seem to suddenly crash and need life saving efforts at the hospital. There are children that look like the picture of health, attend school full time, live crazy hectic lives with playing, school, birthday parties, appts and crash- Abby certainly is nothing like those patients not even at her healthiest, poor kid never could keep up with the other kids..there are many patients with seizures or who have more neurological damage- Abby thank goodness has neither, she has been fortunate that despite a funky body, her brain has been untouched.


From the very beginning of this particular part of Abby's journey, I have doubted the Mito diagnosis. I still do.

Most days I read blogs of children with depletions not making it past a couple years. Of teens with depletions who are so terribly sick and in and out of the hospital.. a few adults who have a depletion from medications or suddenly got ill out of the blue and rapidly got worse-

None of those are Abby.


Most days I spend trying to find out what is "really" wrong with Abby. I am a huge believer in trusting the "Mom Gut" and my Mom gut says Not Mito.. or at least "something else" caused the depletion...

Most days when I read the stories of what these families are faced with, the loss of their children, the horrific decline and illnesses- though my heart weeps for them, my Mom gut screams "See, Not What Abby has.."

Frankly I feel a little guilty that in a moment of sharing their grief these families unknowingly also offer me hope. Talk about feeling pretty rotten.. but, I cannot help myself.. it reaffirms my instincts that we are missing something with Abby.

There are days however when I look at Abby and I see Abby and compare her to a "normal" person. Reality is she is far from healthy- and she is truly an orchid, one tiny insult to her body and all this hard earned progress slips away.. that is not healthy, but the question remains, is it really Mito?

Every once in awhile when I read what families or patients share about their symptoms, I am forced to admit that Abby has the same thing. The endless need for sleep, to hideous weeks of insomnia. Getting a cold or other bug and watching her body react like she has Mono not just a head cold.. These symptoms seem pretty universal. Hard to run from them.

There are those Mito families that also struggle with serious funky allergies, allergies to things that it seems impossible to be allergic to, allergies that rise and fall and develop and disappear suddenly, we can relate to that too.


I now read blogs about families with Mast, SMA3, EDS, and you know what? We can find similarities with them as well.

Sick is sick- it is the Universal great equalizer.

Today was one of those days where reading blog updates reminded me what Abby has in common, and what she doesn't.

We feel very lucky today. I still doubt this "mito" junk, I wonder all the time about how accurate that second muscle biopsy was, I wonder why her metabolic work is always fine, I wonder why and where the heck that depletion came from..

She is getting better, she may never be healthy, but I think all of the things we have learned about Abby this past two years have taught us that there are no absolutes, well only 2- you gotta pay taxes and everyone dies- but those absolutes are Universal too.

So while I cannot simply wish away a depletion, I can say that Abby isn't like the other patients with depletions, her biopsy results were different, her symptoms are different, no genetic proof yet, no sign of Mito in her labs.. that depletion is simply a symptom-

Secondary. That is what my "Mom Gut" says, and I trust it.

Now that she is stable and improving, the journey continues- find the Primary.

2 comments:

Laura said...

I so agree with regard to my son. We know his mito don't work 100% - BUT WHY? He has asthma symptoms and responds to asthma meds ( those he can take without getting sicker), but I just don't believe the asthma is primary. I have exhausted all that mainstream medicine seems to offer (mostly drugs to cover up symptoms) and have started the quest to see what "alternative" medicines may have to offer us. I do careful research and look for those with science or documented history to back them up - just not "accepted" by allopathic medicine because they actually can cure vs treat.
Yes, the journey continues....

Diane said...

I thought about you while I wrote this morning..
We just got our 23andme results, nothing earth shattering, but they also provide raw data that you can up load to find issues in the methylation- that provided some interesting results that can be treated via nutrition- for 99 bucks- Abby and I got a ton of info for just from her spitting in a vial- and very helpful! Interesting that some of the recommendations for her various mutations are ones that we already put into her diet during project elimination- You and I are a like, I equally distrust medical and alternative,until either proves to be the right treatment for Abby! :-) Both have merits and both can cause serious damage. It is hard to walk in both worlds- Generally traditional medicine dislikes the other side, and alternative understandably distrusts the traditional med- thankfully our family Dr is an open minded guy who is proof based- he appreciates anything that makes Abby feel better no matter what side :-)

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