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urticaria pigmentosa/mastocytosis

kathy and spence

Message 7 of 14 Previous Next



hi. My son is 5 and was diagnosed with uticaria pigmentosa when he was about 6 months old. You hear alot of different things from people (health professionals). But he is doing ok now. Be careful. Stress seemed to be a big trigger for him. He went to a pediatric derm initially who took biopsies to rule out cancers. Then he went to Baptist and Duke Hospitals in NC. Children will normally outgrow this. He appears to be doing that with no extreme lesions in about 2 years. However per the heads of dermatology at these hospitals it can be serious...you must pay attention. If lesions start to clump together and mass, they can enter organs , causing damage and cancer. Some children experience learning delays, my son has been in special ed since he was two. And only recently became fully "potty" trained. He will be mainstreaming this year. Depending on the severity of the uticaria, some children may have seizures, my son has had two. His doctors had catscans done both time to rule out any serious side effect, nothing wrong. I have found that topical benadryl seemed to make it worse, so i use a little vaseline. Doc's said he lacked properly functioning histamines???? Also if your child enters daycare, get a note from you doctor. Some well meaning, but uninformed individual, reported me to child services. She thought I burnt my son with cigarettes. Apparently, uticaria is not really known of, so educate the people around you. Sometimes my son in uncomfortable about his "spots", I told them they were angel kisses. That worked when he was little, but I know he is embarassed sometimes. Hang in there, and watch the spots.

 


   
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