Urticaria Pigmentosa

[Angelika]

My newborn nephew has urticaria pigmentosa and we would like to learn more about what foods or other factors trigger the spots or make them worse. We've been told he can't eat certain cheeses (like blue cheese), and canned tuna. Is there a more comprehensive list of do's and dont's that will help us make him comfortable. Also, hot and cold water have been mentioned as being potentially dangerous. Can you explain more on the cold water effects, since we're a family of swimmers and need to know if the cold pool could be dangerous for him. Thank you.

[Alan Rockoff, MD]

The textbooks and websites I know of do not mention dietary restrictions.  (See for instance http://www.dermnetnz.org/index.html and look up urticaria pigmentosa.)
In kids the condition is usually mild and self-limiting.  I suggest you ask the doctor who diagnosed the condition what he or she wants the child to avoid or at last look out for.  I suspect the list will be quite short and nonrestrictive.

Best.

Dr. Rockoff

[UPmom]

Actually, my son has urticaria pigmentosa.  While he does have a mild case, there is a whole list of foods that are potential degranulators, which means they can cause a potentially dangerous histamine release.  Along with foods are hot, cold, anesthesia, stress--the list is actually somewhat lengthy.  If you want a great resource, visit www.mastokids.org  there you will find all necessary resources, along with support from other mothers and relatives with children suffering from UP.  I hope that helps you a little more.

[Benny14]

My son developed Urticaria Pigmentosa at the age of 3 months, and is now 19 months and still has so many spots. We have been to Mayo Clinic, and also Childrens Memorial in Chicago. The doctor said that if they were to rate my son 1 to 10 as 10 being having the most spots my son is a 9. My biggest questions is will the spots really go away and when?

[Benny14]

My son developed Urticaria Pigmentosa at the age of 3 months, and is now 19 months and still has so many spots. We have been to Mayo Clinic, and also Childrens Memorial in Chicago. The doctor said that if they were to rate my son 1 to 10 as 10 being having the most spots my son is a 9. My biggest questions is will the spots really go away and when?

[jennafa812]

Hello.  I am 30 years old and have had urticaria pigmentosa since I was two.  The doctor's all told me my urticaria pigmentosa would go away when I got older.  I'm still waiting for all those spots to disappear!!  Out of all the problems I see listed on the internet associated with urticaria pigmentosa the only problems that I have had with this skin condition are stomaches and what I call "red-faced headaches".  The doctors call it "flushing".  As I have aged, the headaches have lessened and the stomaches have gone away.  I had a daughter in 1997 when I was 24 years old, I had no problems with my pregnancy.  At two, she also was diagnosed with urticaria pigmentosa.  The doctors tell me that every child I have has a 50% chance of having urticaria pigmentosa.  My daughter gets the "red-faced headaches" about once or twice a week.  She lays down and they go away.  Neither of us are on any medications.  Other than the headaches, we lead normal lives.  Luckily most people don't notice all the spots.  I don't have any on my face, arms, or legs - my daughter is the same.  She is now 6 years old and starting 1st grade.  I just wanted to give some other people out there some reassurance.  I know all cases are different.  Good luck!

[steve k]

I have urticaria pigmentosa, I am 27 and it is still prevelant on certain parts of my body.  I have spots that are larger than quaters.  It is not noticable on my face and arms much anymore and I think that is mainly due to exposure to the sun.  However, my trunk, the underside of my arms, and upper legs portray the spots still to this day.

Having this condition is quite a unique experience.  If you have any specific questions send me an e-mail at ***@****.

[cmonks]

Hi All,
I am 23 and have had UP all my live. Like most people I have heard of, the UP has not gone away. All my spots are about 1-2 cm in size but luckily I've nonoe on my face. Only every other part of my body.
In answer to some of the questions.
1. My spots have not gone away. ever and if doesn't ook like there is any sign of them going away.
2. For Parents out there Inform you kid of what the UP is and whats its all about from a very early age. This will allow the kid to accept the problem and also deal with any other social ocasions. I know it helped me alot, in school at the age of 5 i was able to explain to classmates what I had and they were intriguied by it.
3. Food to avoid. Well as regard what one are histamine producers. That's a "how long is a piece of string?" kind of question. It would all depend of what you are allergic to. I myself can't eat too much dairy.
4. Water. This is one of the worst to try to explain. Basically any radical change in heat. cold or hot will event in a flush/attack. The best temp for water is body temp.
5. I get a hell of a lot of heartburn as a result of the crazy histamine levels.
6. Alot of the above can be controlled by H2 histamine blockers. These are the best for UP suffer's. For me anyway. These have made life so easy.
Hope this help some people the more about UP we know the better.
If you want to contact me directly its
***@****
regards,
Chris

[cmonks]

Benny14