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Mastocytosis: red spots that ooze...?

AriahsMom
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My daughter, Ariah age 13 mos has mastocytosis. The form she has is called urticaira pigmentosa. For the past week she has been getting these red spots on her body. They appear in the morning and about twelve hrs later they have a small head on them and then they began to ooze a clear discharge. They are bothering her like crazy and she has been scratching them until they bleed. Her doc has no idea what they are and suggested maybe an insect bite but I am skeptical. Could they be from her masto? I am putting pics of them in my profile pics for all to see ( I don't know how to post them otherwise.) Any help would be awesome!

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Zyrtec Benadryl Mastocytosis

10 replies

AriahsMom

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cherylpenner

BAD FOODS FOR MASTO and see here to see why: http://www.allergynutrition.com/
Some but not all of the foods to avoid: cheese, yogurt, buttermilk, artificial colours, artificial flavours, preservatives, alcohol, packaged rice and pasta; commercial salad dressings;all fish and shellfish, processed meat; prepared dessert fillings, prepared icings/frostings, cake decorations, confectionairy, commerical candies; all chocolate and cocoa, flavoured gelatin, mincemeat, prepared relishes, olives, soy sauce, commerical ketchup, gherkin pickles - see web site and/or book at the above site for complete list.

cherylpenner

Allergy Dr. Tips That Helped Me a Lot:
take rugs and drapes out of bedroom; cover matress and pillows with plastic covers, no bounce type products in the dryer; only use Ivory soap (I don't I use whatever is on sale, even Tide, but I double rinse); no nuts, no berries, no alcohol....this advise helped a lot. I carry liquid, children's benadryl in my purse just in case. They wanted me to take benadryl everyday but it put me to sleep so I save it for attacks, otherwise I buy the house brand at Cosco....main ingredient Lorandyne way cheaper than drug store (72 pills for $15., one a day non drowzy). Oh yes and stop eating salads at chain restaurants because of the chemicals they spray on it in the country in comes from (different rules than Canada) and what they spray on it to keep it looking fresher longer! Same for preservatives in foods. If I think of anything else (brain fog) I will post it.

cherylpenner

ALOE PLANTS/LOTION: I keep an Aloe plant on my desk at work and at home. When I feel a hive coming on I tear a piece of the plant off and wipe the clear gel on the hive. The hive goes down and does not leave the usual mark. And if my hives start "glowing and itching" I do the same thing and they stop. Of course you can get Aloe in a bottle at the store but I like the plant.

cherylpenner

Ester C Supreme - by SISU - why this VItamin C helps Masto patients. It has Quercetin is one of the most potent plant bioflavonoids, and has the ability to inhibit the release of histamine, thus calming allergic reactions. As a bioflavonoid it also recycles Vitamin C allowing it to quench more free radicals in the body.

Poetessa

Dear Ariah's Mom, although I was too young to remember but in speaking with my mom, those sound like what I had as a baby, I don't think they are bug bites considering she has just been diagnosed with Masto. Has she seen a dermatologist? Immunologist? Does the Benedryl help?
A cool bath and or ice packs.
I get weird things on my neck that look similar but mine last for months and leave brown spots after... skin leisions? I'm not sure.
I wish you all the best for you and your little angel, my heart goes out to you!!
If I think of anything else I'll let you know,
Big hugs,
Leslie

Valarie

I myself might ask the doctor to send in a swab of the discharge for testing, it could be some type of staph infection. Just my thoughts, I wouldn't know for sure, but it could be.
Valarie

AriahsMom

Today we took Ariah to her dermatologist. She has several more red spots. Most on her face! He said it is a complication from her masto. She is now on benadryl and zyrtec. I hope they go down soon and do not get infected. We are also trying the low histamine diet and the aloe lotion. In the doctors opinion she is getting worse and should see a pediatric derm but ALL the ones in our area do NOT accept our insurance. He said we should go anyways and that made me so upset I cried! Does anyone know how to get her seen at the NIH or by Dr Akin? My husband is in the US Navy, have any other military ppl been through this?

cattoy

Hi Ariah,

That looks and sounds like Diffuse Cutaneous Mastocytosis. There is a wonderful woman you could contact who also has a baby with this. She's in the UK, her name is Maria. Her baby is Stephanie. Maria has worked very hard to find relief for her child and might be a very good resource and contact for you.
Maria's email: meemeebrown@sky.com

AriahsMom

Everyone: thank you for your input looks like we will be back at the doctors sometime this week to get her all worked out! THANK YOU!

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