Casey and Gail

From Casey (North Carolina, USA)

Seeking answers

My son (age 5) was recently diagnosed with Type V PRP. I have many questions. Does anyone have any advice? I am very interested in any help that is out there.

  • How do I explain to people, in clear language, what is happening to my son? I saw his regular doctor (not PRP doctor) at church this morning and told him about the diagnosis. His response was, “Great, so it is just another form of Psoriasis”.
  • Do I need to talk to his school teachers, the school nurse, etc.? If so, what do I tell them? What should they be looking for? When should they call me? Can he participate in outside activities?
  • What are autoimmune issues related to PRP? What precautions should I take, if any?
  • What are the possible side-effects from high powered steroid creams? My son was bouncing off the walls last night after our first application? Although I was happy to see him up and moving, it was pretty “over the top”!
  • What should I do about his eyes? He has done a lot of blinking at various times over the past few years. How does PRP affect the eyes and what should I be doing to be on top of things?

Ok, enough for now . . . .

Forgive all of my questions, but there just isn’t anything out there that reads clearly enough to get straight answers. I am hoping that someone out there can help.

Response from Gail (South Carolina, USA)

[This response is based on Gail’s daughter’s experiences]

Part 1

The following is my opinion from raising a child for nearly 30 years with PRP regarding what helped or didn’t help her. It is often said, each case is different.

My daughter, now 29, was diagnosed at age three with PRP. She saw her first dermatologist at age seven weeks. A biopsy was done at three. As far as I know, no one in either side of our family had PRP before her. Genealogy is my hobby and not even dry skin has been reported in the family. I don’t remember ever being told the type and when she was young I didn’t have the Internet to know there was a difference.

Until she was twelve it was only on her hands, feet, and knees. At that time, she had an ear infection and was put on a penicillin related antibiotic. Her whole body was inflamed and infected. She spent 22 days in the hospital ? but didn?t know what to do with her. For the most part she lived a normal life.

Two other times in her life, when she was sick, she had a skin reaction after taking a penicillin related antibiotic. No more penicillin drugs for her! No oral medicine has really helped her much. Now she is taking methotrexate which does calm it down some. Your son is very young to try some of the oral medicines.

She did try the PUVA light therapy which didn’t hurt but didn’t help either.

When she was young and ran a fever, her face would turn bright red like your sons but it always went away in a month or so.

The advice to moisturize, hydrate, protect skin from sun is wonderful advice. In addition, protect him from sick people with colds and flu. Vaseline or vegetable shortening on the feet at night with plastic bags on his feet with socks might help.

Part 2

PRP is a rare skin disorder and hard to explain. Most pediatricians, emergency room doctors and general practitioners will not know what it is. If they are a good doctor they will care enough to look it up and not guess.

I did talk to teachers and the school was great. I never wanted my daughter to be treated differently, but I did want her health considered. Teachers let her do what she felt like doing. Her case has been extreme but she still played softball, took piano, tap, jazz, and gymnastics.

Her friends were great. Children accepted the fact she had something different. Over the years I have had more trouble with adults. A waitress at a restaurant “chewed me out” for letting her get sunburned so badly. All sorts of comments by adults in stores, etc. . . . Even now, I have even had people ask if I ever took her to a doctor.

It seems as if any illness made her skin flare up.

We had the drug store order a pound jar of Triamcinolone cream and mixed it with another ointment. Creams didn’t help her at all. We saw no great improvement with the steroids. Creams with urea in them caused her skin to burn. Vaseline is what she uses now – as an adult.

As for the eyes, please consult a physician.

As for straight answers you might not get any. We have a teaching hospital near us. I recall another mother with a young child also recommending a teaching hospital.

One dermatologist asked me once if I minded all the student doctors looking at my daughter. He said it might be the only case of PRP they would ever see. Ginny was an outgoing child and was okay with the attention they gave her.

With PRP children, keep asking your questions. Don’t ever worry how many you ask.