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 13, 2012

Here we go again!

Admittedly, with Project Elimination complete, we have felt a little lost without a mission. On the positive we have slowly added a few new foods with success, but we are missing the hunt for new and safe products, the research, the food diary,kind of like heading to work each day to work on a project you have faith is going to help your career and your company tremendously. Abby is far more stable, she isn't well enough to go back to College yet, or shop, though she is at the she can wash her own hair stage with the latest improvements energy..my "gut" has thought the whole time that the depletion was a secondary, yet we and her specialists had thought we had ruled out all the primaries- but, maybe not.


After talking with Dr. Kendall about our suspicions about a Mast Cell Activation Disorder- we finally decided it was time to contact a few Mast Cell Specialists.

Let me say this was not easy. In the past 17 years we have been blown off at every turn trying to get help for Abby. Either they don't know, and don't want to admit it, or they simply weren't bright enough to see it. Or, their Medical Schools did not teach them to look for some of these things. Plenty of the specialists we saw over the years were very human and tried to be kind, but that doesn't mean they were able to help Abby. The one thing that still stings after all these years is when you think you have found the right Dr. and they give you the blow off.

I have to thank the folks that have read my blog and taken the time to send me an email because from what I described about Abby they either knew someone with a MCAD or had it themselves and saw their own symptoms repeated in Abby. I have to thank all those thinking Mom's on various chat boards, and groups who have encouraged us to look at Mast cell disorders, they too saw the same constellation of symptoms that matched more closely to MCAD then Mito.


One of the Mast Cell Drs. wrote back to us quickly. He agreed completely that much of what Abby is dealing with sounds more like MCAD then Mito. Now, does that mean that she doesn't have a depletion? NO. Does it mean she doesn't have a myopathy? NO. She had poor fetal movement in the womb, and clearly issues from birth, and those issues are not likely to be blamed on Mast. It does mean at least the depletion part could be secondary. It does mean that maybe all the different organs that are having problems could be more MAST then Depletion- and that would radically change her prognosis to a much brighter and potentially more treatable one.

Now comes testing for Mast and if that is the cause, figuring out the best way to treat it.

The bad about Mast Cell Activation Disorders is there are fewer specialists for MAST then Mito.. that there are a lot of different presentations, a few different types and within those types a lot of different prognosis's.. Some with MCAD are completely disabled, some respond well to medications, some have died..for some it may only affect the skin..many lead close to normal lives.. Huge variables. Still, something that can be treated and explains a lot of Abby's flares, food issues, etc would answer our lingering questions and allow us to move forward. Of course, somewhere deep down inside I wonder if this like mito will be more of a pandora's box that would be better left alone.

Derek is a little worried that Abby and I are going to be horribly disappointed if the testing proves it cannot be a MCAD.. but you know, I would rather experience Hope,joy, in full for now. I know if they rule it out we are going to be horribly disappointed- we so desperately want to find a reason for these issues that is treatable, that won't have the same rough prognosis that a Depletion does. The only reassurance we have with a depletion is likely Abby has her own special blend and that they are now finding lots of adults and other teens who's life span hasn't been affected by the depletion, just the quality.

In my heart I still see too many holes in this Mito diagnosis- My gut says the depletion is secondary and until it is proven primary I am going to run with it. The fact is, my gut has gotten Abby through the worst winter in her life-and the past 17 years.. we avoided the tube, we avoided the hospital, we listened to our gut and she is stable now. So gut instinct it is for today.

Let Operation Mast Cell begin!

2 comments:

Circus of 6 said...

Hi! Abby is very blessed to have you as a mama! I believe in your quest, especially because she is otherwise stable and has improved through your hard work. I understand your need for a diagnosis, not to say HEY my daughter has ... but to find the best practices for her health. I went through that too with my kids. Do we NEED a diagnosis?? Ultimately the Dr and I decided yes for the simple reason of accurate treatment. Whether the treatment is avoidance, medicinal, or holistic, you can treat appropriately with a diagnosis. I am cheering you on from 10 hours away!! Can you hear me?? Even if you get a "no" on MCAD, you can chalk it up to one less diagnosis to research! It will not be a waste of time, this is your daughter and nothing is a waste of time. :)

Jamie

DrDiana said...

Hi Diane,
Many of us who seem to have the same or similar constellation of symptoms (and frustration)may have "mast cell activation syndrome, mediator negative". Yes, we call it "syndrome" now, instead of "disorder". Science moves quickly (sort of). I believe (through research, comparing notes, and more studying), that our mito issues AND our mast cell issues may be secondary to "the root cause". Did you see if Abby responds to Zyrtec? That can be a sign that mast cell medications may help her (even without official "MCAS"). Please pop on Prettyill.com -- I'm organizing some studies that should help us put our finger on the root cause for each of us (and how to treat it beyond mere symptomatic relief). My kids are also affected, as am I, but my kids are back into "normal life", and they SWEAR they don't have a "condition" (until I pull their meds for a blood test! ha). I'm hoping I can help everyone's journey a lot shorter, less expensive(!), and yet provide real answers for us. Hang in, my friend, :) Diana

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