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My son is 7 and has PLEVA. I know that it is very unheard of but I would love to find a support group for this awful thing. We got diagnosed after a month of my son being in severe pain with necrotic sores every where from head to toe. Took us 11 doctors to even get a diagnosis. This whole thing has been so frightening not only for my son but myself. Fear that the next set will begin soon. Fear that the meds won't work next time. Fear that people won't listen again. Honestly just trying to find people who know what I am going through and people who can help me to provide emotional support for my son through all of this

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I was searching on web for pityriasis lichenoides and found your post. Well I hope your kid is all healthy now and you don't need any support groups anymore. My son 9yrs old just got diagnosed with the same.

i can relate to you because it took me 7 different doctors and over three months of effort to finally get him diagnosed. He underwent two biopsy procedures. so far he has had two phototherapy sessions with no visible effect. Plus i am applying fucicort twice a week and fucidin twice daily, all over his body. he is taking 3 session per week currently.

I am hopeful things will get better for him soon and there will be no reoccurrence.

Please do let me know of your experience if possible

Best if luck n health for ur kid n stay strong 😊


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