Urticaria Pigmentosa

[jkrjm]

My 2 1/2 year old daughter has Urticaria Pigmentosa with alot of lesions; her back has many as does her neck and scalp, the front of her torso has quite alot and they are also on her legs, feet, arms and face in decreasing numbers. Her medical notes describe her condition as 'a benign condition which she should grow out of soon', there is no mention of avoiding the prescribing of, or contact with any of the Mastocytosis triggers and her local doctors believe that if we give her clarityn or piriton her lesions will dissapear. We have been trying to get an accurate write up of her condition put on her files along with the information on triggers and we have also requested that she have epi-pen available should she have a large mast cell release from contact with a trigger. The school she will attend have also requested that on her starting school she have an epi-pen. Should her medical records contain accurate details of her condition along with details of triggers and should we have an epi-pen encase of degranulation?

[Alan Rockoff, MD]

I'm not sure why you think her notes are inaccurate.  In infants this condition is usually not serious and self-limiting, just as your doctors say.  Treatment is rarely needed, and severe symptoms from mast cell release are rare.

If the school (at age 3??) requires an epi-pen, fine--no harm in having one, even if it's unlikely to be needed.  The same would be true for a list of drugs to avoid, although aspirin, codeine, morphine, alcohol, and anticholinergics should be easy to avoid in such a young child.

I gather from your question, though, that you don't entirely trust your doctors.  That is your right, of course, but if so you ought to either have a straight talk with them or get another opinion from someone you're more comfortable with.  Medically, your child should be fine.

Best.

Dr. Rockoff

[pazifij]

My son was diagnosed with urticaria pigmentosa at 2 or 3 months old.  He is now 19, still has the "spots" but only on his torso, and I believe has lesions on his organs.  We have twice gone to the ER during his teen-age years with him having an allergic reaction--he says it is extreme, painful, internal itching.  No one associated it with his urticaria.  I'm wondering what kind of doctor diagnosed your daughter?  I want my son to go to a doctor who knows something about this, but don't know who that is.  The doctor who diagnosed him was the only one we've seen that's ever known what he had.  I've spent 19 years explaining what "those spots" (or even once "those bruises") are.

[jkrjm]

A dermatologist diagnosed it, my worries are that her doctors do not know anything about her condition, I have been informed by mastokids,org that sould she take a fall into cold water, be stung or even be prescribed certain antibiotics etc which contain asprin derivitive that this could cause degranulation of the histamine in her lesions and cause shock, she blisters alot and gets big red angry reaction rashes all over if she gets warm, stressed, ill etc. I have been advised by one quater to take it seriously and from others to take it with a pinch of salt. If one dermatologist cannot diagnose it by rubbing/stroking the lesion the find another who can especially if it is systemic/internal as the triggers for shock are more risky. But don't take my word for it as I'm only a mum, see a specialist.

[pazifij]

Thanks for the response.  I, too, am only a mom (and one who raised my son mostly before the internet and all this information!).  I was told he should avoid aspirin, codeine and morphine--that was all.  We never worried about anything else, and he never had any problem until he was a teen-ager (which we had been advised could happen if the spots didn't disapper around puberty).  Now my problem is getting him to go to a doctor.

[tamla]

My son was diagnosed with urticaria pigmentosa at 3 month old also. He is now 2 1/2 years old. My dermatologist follows my sons condition every 3-6 months. He has many allergies and some we found out the hard way. My son recently had an ear infection and was given Cefzil which is an antibiotic in the Cephalasporin family. Seven days after his last dose we ended up at the hospital as his mast cells degranulated. We were then prescribed an epipen one for home and one for his preschool. Heres a list of his known allergies if it helps, Demerol, Morphine, Codeine, Opiates, Aspirin, Aspirin derivatives, Polymoxin B, Procaine, Alcohol and of course Cephalasporin antibiotics. I know of another case where a little boy with the same condition reacted to Cefzil too.I was informed that my son will grow out of the condition but the ealiest known case for them was between 5 years old and puberty. If it remains into adulthood the risk of it going systemic (affecting the internal organs) is higher, this is rare in childhood apparently. My son was showing improvement until his allergic response, his rash is now redder instead of brown pigments plus hes blistering again. His condition is controlled by taking Atarax (antihistamine) three times per day. Apparently Ranitidine (histamine blocker)is also hepful in some cases but it didn't help my son at all. My heart goes out to you, I've had a rough couple of years with my son so I know how you are feeling, goodluck!

[Katharine]

I was diagnosed with Urticaria Pigmentosa at birth and still have it in the same form at 20.  I have never been completely sure why I shouldn't have a long list of things my parents were told about when I was born.  I want to join in with my friends for a drink on a night out but I can't have alcohol I've been told.  My life is at risk if given morphine is another one I have been told.  People ask if I have a poor social life because of these - also no narcotics (thank heavens!) - but no - I am fine as I am.  I too have for 20 yrs had to explain what the "spots" or "bruises" are and I now have it down to a fine art - "its a skin disorder - and no its not catching!"  I would love to be in touch with someone who also has Urticaria Pigmentosa as I have never met anyone else with it.  My dermatologist doesn't have anyone at the moment with it either! I'm sure we're not that rare!

[mende]

I totally understand the hurt that you all are going thru. My daughter (now 5) was diagnosed when she was 3 mos old. She was supposed to have outgrown this "disease" by the time she was three, then onto kindergarten, etc. Will this ever end? We explained to her that the "spots" (as all parents of mastokids like to call them) are where Jesus has kissed her because she is so special. She is older and that excuse has almost ran its course. I have often been questioned about the "bruises" from strangers in grocery stores and other places, I simply glare and walk off. Her daycare sponsered a "why everyone is different day" so that maybe would help her. I, too, am concerned about the longterm effect-is this going to settle into her organs? I have been assured by many physicians in my area that we are seeing one of the best dermatologist in the country that leads alot of research in this area. Still doesn't make things right though. We were terrified to have a second child but luckily he is okay so far. Scared to read the above comment about the 19 year old still having it. I think any of us would go to the end of the earth to make it better for our children. Let's say a prayer for each other tonite.
I am also concerned because my doctor has never discussed a need to carry an epi-pen. Is everyone else doing this? We do have her blood work checked every year though. So far, so good. Mastokids.org is a wonderful website and support site as well.

[Neiter]

My son is 9 months old and was diagnosed with urticaria pigmentosa at 6 months old.  I have been doing alot of research on this disease and I am beginning to find out several things that the doctors are not telling me.  I have learned that the drugs his father was taking when I concieved is the main reason why my son suffers with this condition.  I am a young single mother of 18 years old and my heart gose out to all of those with this condition.  My son goes through several nights where he can't sleep or he is up all night screaming because he's so uncomfortable.  He takes zyrtec once a day and I give him Aveeno oat baths a couple nights a week ,I use all the sensitive skin products on him afraid that he'll have a breakout if I don't, I'm constantly putting lotion on him. And all of these seem to help.  I pray for all of those with children who suffer with this condition and we pray for the children, I pray that they all grow out of it without suffering any sever outbreaks, and that they find a comfortable way to deal with it for now.  May god bless you all.

[Spotsareok]

Hello,
I am a 39 year old woman who has had "spots" all of my life!  I have 2 boys, one of them has spots, one of them does not. He does have the urticaria internally though. My son with the spots has only a mild case.  I have a more severe case, it never changed when I reached puberty.  I have had my spots since I was 2.  I have had a very normal life.  I do have an occasional drink, no problems.  I do have a very sensitive head, if I get hit in the head I will get a very severe headache.  I get hives easily too.  Both of my children have allergies, I don't know if they can be attributed to the Urticaria or not, we live in AZ, we all have allergies.  I never had a problem getting a boyfriend, I did have to suffer through the no stop questions.  My mother used to dress me in shirts that went up to my throat.  She only wanted to protect me from the comments.  I know that kids would have found something else to tease me about if it wasn't the spots.  That is just how kids are.  I have suffered through a lot of personal torture.  I was ashamed of my appearance, I found out it never really bothered anyone though.  I wear a bikini and I wear tank tops too.  You just have to understand that is how some people are, they will gawk and that is that.  As for medical conditions effected by the urticaria.  I have not had any.  Yes I was told all of the precautions, I have not had one of those things happen to me.  I have had a few times where I think I may have had a histimine build up and suffered through a very severe headache.  I can remember times I have had headaches so bad that my lips would turn purple and you could see my heart beating through the skin in my lips.  I also have probably over a dozen raised spots.  These are very sensitive and thankfully they are in a place that my hair hides them.  What I really want to stress is that my life if great, this is not a handicap.  Don't worry your children will be fine, they will adjust and they will be happy.  They will most likely be better off than most kids.  They will have learned how to find the best of themselves early in life.  One thing I do suggest is to NOT try to protect them from the comments, that only makes us feel like we are not normal.  Look around everyone has something, ours just happens to be spots.  It really isn't that bad.

[sash]

hi. I'm in a very similar state to yours and would really like to be able to talk to someone as i know of no one. finding it hard to cope alone.

[sash]

hi. I'm in a very similar state to yours and would really like to be able to talk to someone as i know of no one. finding it hard to cope alone.