Author Topic: Mastocytosis  (Read 4223 times)

Offline Pennie

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Mastocytosis
« on: May 23, 2009, 01:11:34 PM »
Has anyone ever heard of this?  My friends little boy 18 months has it.  It is called an orphan disease b/c there are so few people w/ it.  I just looked it up and it says it comes from having too many mast cells.  He can't "tolerate" cold.  If he has body temperature changes his body(from how I understand it)releases histamine.  So, for example he ate ice cream the other day and screamed for two hours b/c it causes in lungs and insides to swell.  Apparently there are three types skin, inside and then both.  He has both.  He has little what I woudl say look like "liver spots" all over his body.  She usually warms everything he eats or drinks(I guess the ice cream was a thing where he hadn't had anything cold for awhile and they forgot how bad it is)She said she has to give him benedryl b/f she gives him a bath.  So I guess it's not just coldn necessarily but any body temp change.  Anyway......right now the only way to "treat" it is not to give him cold stuff but at some point they MAY have to go to "drugs" which she does not want to do.  It is not genetic but his grandpa has it but has never been diagnosed but he called her the other day and said he ate something and he could actually feel his insides swell.  He said if he didn't know what he had eaten he woudl have thought he was having a heart attack.  Can anyone direct me or help me see what she can do naturally for him?  I don't really know where to start. Thanks.

Offline hi_itsgwen

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Re: Mastocytosis
« Reply #1 on: May 23, 2009, 04:23:55 PM »
If anti-hystamines work, then I would look to herbals and food that have natural hystamines.  Since hystamine production is a function of the immune system, I would also probably research before ever giving him anything to boost the immune system.  (prob. not a good idea in this situation)

In my notes, I found a suggestion for making a tea out of several herbal anti-hystamines:
basil, chammomile, fennel, oregano, and tarragon

This works as an internal drink, and also externally on the skin.

I know onions also have quercitin in them, which is anti-inflammatory.  Cooking the onions destroys the sulphur compounds, which are so strong tasting (and the anti-bacterial properties, I think?)  But the quercetin is still present in cooked onions.  So that may be something that they could add to his diet as well.

Goodness, gracious, may God bless that family with an extra measure of grace.
~Gwen
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Offline boysmama

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Re: Mastocytosis
« Reply #2 on: May 24, 2009, 04:49:40 PM »
This is not an easy question nor is there alot of ready information.

In short, I believe that this should be treated with whatever brings relief while using a strict diet, supplementation, and VERY careful cleansing to bring down the level of inflammation in the body. It seems to be autoimmune and a genetic disorder, but not in a way that "you just have to live with it because you were born this way."
Contrary to what many people believe some, even many, genetic disorders can be reversed and this is one of them.
Look up mast cells, what they are, how they function and you start to see that auto immune type protocols should help. Hope they can get good and progressive care. Please pass on my prayers and strong belief that this child can reach a level of healing.

Offline BJ_BOBBI_JO

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Re: Mastocytosis
« Reply #3 on: May 24, 2009, 05:06:05 PM »
Im not sure why but for some reason something just screams out to me that liver health might be helpful for that little boy. Like herbs that cleanse and support the liver.

Offline blessingskx4

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Re: Mastocytosis
« Reply #4 on: February 19, 2010, 07:41:36 AM »
My six year old daughter is also suffering from this disorder. We are undergoing some testing to determine which type she has. She has been tested for food allergies which trigger a reaction and she is also very sensitive to cold. I would be interested in anymore information or suggestions anyone has!