dinydeek
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Posts: 14
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Thank you for allowing me to participate here.
Recently I joined a few facebook groups that talked about their experience with Mast cell disorders, and for the first time it sounded like I found folks who knew my daughter.
My daughter saw the allergist for skin testing at 9 months- and for the past 17 years it has been a battle.
For a long time no one knew what was wrong with her- I was left to my own devices to do what I could. I relied heavily on Allergists. We sold a house because of worry over cat contamination. We moved across Country hoping a different climate would help.. we have seen hundreds of Drs. At 15 they found she had had mitochondrial depletion. But, that just doesn't explain the "allergy" issues..
She reacts horrible to scopes(GI, about1- 2 days after a redhot mess for a week), she reacts horrible to stress or fatigue(weeks of misery)anytype of local like lidocaine freaks her body out,She is deathly allergic/reactive to all NSAIDS, recently we had to remove Miralax.. we have tried every compound pharmacy to get safe vitamins and within a day or two she starts reacting.. endless.
She will faint and hive in the shower, she doesn't tolerate heat or cold.. The list of foods she cannot have either from immediate or delayed reaction grows by the day... Even benedryl is making her react..
We have always described her reactions as "rotational" she can eat something for a day, 2, maybe a week and suddenly "flares" for weeks..
She is having problems with her kidneys,pancreas, GI(only found gastritis and she has significant malabsorption)
Also, she will have a year here and there where she does reasonably well and tolerates a lot-
This doesn't fit the Mito symptoms- but recently it was pointed out that she does have a lot in common with some Mast patients.
We wrote Dr. Verstovsek here in Houston and he said he would take a look at her- hoping if it is Mast he will be able to tell us at least whether we are on the right track. So calling for an appt today. I have hesitated for a couple months to go down this path, I hate to put her through anymore, but she was so flared all winter she lost a lot of weight and is so limited on food.
She is reacting to dairy,soy,corn,nuts,shellfish,tomato,miralax(Peg allergy), and NSAIDS and Steroids(she gets diabetes from 1 dose) and lots of other stuff.. It has been tough to cook! For the last 2 weeks we have have cooked "clean" and minimized airborne allergens and tried to eliminate what is listed as high histamine- and she has shown terrific improvement- still sick but even her lab work looked better.
Hoping we are on the right track and this dr. will at least be able to point us in the right direction,
Dinydeek
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