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Urticaria Pigmentosa (mastocytosis) Health facts for you

Posted by on Oct. 28, 2007 at 12:49 AM
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I got this information sheet from my pedi dermatologist with guidelines about Urticaria Pigmentosa. I thought I would type up this information in case other doctors haven't given it out.

What is Urticaria Pigmentosa (UP)?
Urticaria Pigmentosa (urr-tah-care-ee-ah pig-men-toes-ah) is a rash that affects the neck, arms, legs, and trunk of infants, children and young adults. This kind of rash does not happen very often. The rash is made up of red to brown color spots that are flat or slightly raised. Sometimes the spots will blister. There may be a few spots or many spots. The spots form hives when the rash is rubbed or scratched.

What causes Urticaria Pigmentosa
UP happens when there is an increased number of mast cells in the skin. The exact cause for the increased number of mast cells is not known. Mast cells are present in almost all parts of the body and help to fight infection. They also make a substance called histamine. Histamine causes hives, itching, flushing (redness) and the red color of the rash of UP. Many things may trigger UP. A trigger is something that results in the rash and itchy skin of UP. To understand what a trigger is, think of a light switch that turns on and off. A trigger is like a light switch. Things that turn "on" the skin rash of UP are called triggers.

How is Urticaria Pigmentosa diagnosed?
Urticaria Pigmentosa is diagnosed by signs and symptoms. The skin rash of UP and the itching help the doctor make the diagnosis.

What tests might my child have?
A skin biopsy can be done but may not be necessary. Sometimes other studies such as x-rays and blood tests are done as well.

How is Urticaria Pigmentosa treated?
Use medicine as directed:
The medicine may make the rash less itchy. This medicine is given by mouth and is called an anti-histamine. An anti-histamine is a medicine used to decrease the release of the histamine from mast cells.

Take care of your child's skin: Sun exposure may increase the brown color of the rash. Applying a sunscreen with SPF 15 may help to prevent the spots from becoming darker. If the rash becomes dry, scaly or rough, apply a moisturizing cream or ointment 3 to 4 times a day.

Avoid things that trigger UP: Triggers do not cause UP but they may bring out the rash or make the rash worse. In addition, massive release of histamine in the skin can cause low blood pressure or even shock. You will need to avoid things that trigger the release of histamine.

How to avoid things that trigger Urticaria Pigmentosa
There are a number of things that can trigger the rash of UP. Some of the triggers include emotional stress, medicines, foods and physical stimuli.

Foods and Liquids: Such as cheese, lobster, jelly fish, crayfish, spicy foods, and drinking hot liquids.

Drugs: Some of these medicines are used in the home. Other medicines are only used in the doctor's office or in the hospital: aspirin, codeine, morphine, alcohol, polymyxin B (found in polysporin ointment), thiamine (a vitamin), quinine, dyes that are used to take x-rays, opiates, nonsteroidal anti-inflammatory agents, D-tubocurarine, scopolamine, procaine, gallamine, decamethonium, pancurinium, and dextromethorphan.

Physical Stimuli: are mechanical or external factors that cause more histamine to be released: exercise, vigorous rubbing of the skin after bathing or showering, hot baths, drinking hot liquids, spicy foods, sunlight and cold exposure (especially swimming).

Other: Emotional stress, IV high molecular weight polymers (compound 48/80, dextran), calcium inonophor A23187, snake venom, Hymenoptera venoms, complement-derived anaphylotoxins, bacterial toxins, adenosine triphosphate (ATP).

How does Urticaria Pigmentosa affect your child?
The rash of UP is not painful but does cause itching in some children. Massive release of histamine can cause headaches, flushing (redness of this skin), diarrhea, vomitting, wheezing (breathing hard with a whistling sound), increased heart rate and a decrease in blood pressure.

How long does Urticaria Pigmentosa last?
Most infants and children will outgrow UP as they get older. New spots may continue to appear as long as the condition lasts. There is no known treatment to prevent new spots from appearing. The reddish-brown spots may fade as your child grows older but can last for months or even years.

This information sheet also recommends  ordering a medical bracelet for your child to wear that reads: Urticaria Pigmentosa (Mastocytosis). Your child should wear this bracelet at all times. If your child has surgery or goes to the emergency room, make sure to provide them with this information because a lot of the triggers are used in emergency situations.

Alert - Take your child to the Emergency Room if your child has:

Severe flushing
Wheezing or fainting
Problems with breathing

Call your child's doctor, nurse or clinic if you have any questions or concerns. Call right away if your child has:

Diarrhea that does not go away.


I hope this information is helpful to anyone who's child has UP.


by on Oct. 28, 2007 at 12:49 AM
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Replies (1-9):
del_bug
by on Dec. 21, 2007 at 5:21 PM
Thank you for taking the time to type that all up!  Great info!!!
Del

alaskamoma
by on Dec. 29, 2007 at 12:24 AM
Thank you for the information.  I had read most of this while visiting Mastokids.org and researching after my dd was diagnosed.  I also found a direct possible link to UP in HIB and HepB vaccine inserts because my daughter broke into spots within an hour of her first vaccines at her 2 month well baby check.  There was an obvious trigger.  Up to that point we didn't have UP signs at all.  I wonder if anyone else ever experienced this.
LOL
bellasmom870
by on Jan. 14, 2008 at 4:51 PM
Bella was born with up but she did have a reaction after the first set of shots. She hasn't had any problems with her other shots.
del_bug
by on Jan. 15, 2008 at 9:12 AM
Candice was born with UP and only had a reaction with only one set of shots, I believe it was her 15 month shots, and it wasn't too bad thankfully. 
kayngabsmom
by on Jan. 22, 2008 at 3:25 AM
intersting I didnt notice anything on Gabby until she was a month old or better..we were diagnosed at 3months old but that was after a month of telling the docs something wasnt right.

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CamyliazMommi07
by on Jul. 28, 2008 at 4:26 AM

my daughter has UP Masto.

seh gets blisters every now and then, also her skin is VERY blotchy!

Here's sum pix of her last blisters....

its right by her armpit...that was a big one!^^^

theres a cluster of them on her neck her...u can see one sticking out...


del_bug
by on Jul. 28, 2008 at 11:12 AM

That is similar to how Candi's reactions happen as well.  They will fill with the fluid and sometimes it's even a red/purple color and then will errupt and then scab over and eventually go back to how they looked before the reactoin happened.  It's awful!

bellasmom870
by on Jul. 28, 2008 at 2:53 PM

Bella used to get blisters on her scalp. She started getting them 4 days after she was born and they would pop up every four days. It had our doc stumped for a little while until she saw the 3 spots on her back. The blisters would pop up very quickly and then just burst and scab over. She stopped getting them when she was between 4 and 6 mths and hasn't gotten any since.

alla_b
by New Member on Oct. 2, 2013 at 5:18 PM

my son got this blisters (urticaria pigmentosa) after his first set of shots, witch was at 7 months and there were quite few of them. and after his second set of shots at age of 12 months they double in the amount. now i do not know what to do. anybody notice that shots trigger them to inflame?

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