In the Queue — PRP & Kids

FROM THE EDITOR

The Lion’s Share of information presented in PRP 101 comes from Land of Chat posts and comments. The purpose of “In the Queue” is to provide a staging area for the collection and processing of PRP patient and caregiver sights and observations. The post(s) listed below are “In the Queue” for content development under the category of PRP & KIDS.

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Any current member of the PRP Facebook Support Group may use “Leave a Reply” to NOMINATE any post. Simply copy and paste the post’s web address (URL) into the “Leave a Reply” field.


(1) PRP & KIDS

Ranae G — Brandon, Mississippi; March 19, 2019 (31 comments)

“Anyone have a toddler or child with PRP?


(2) PRP &  KIDS

Stephanie D — Colorado; February 27, 2019 (24 comments)

“Hmm, so this rash has spread rapidly over my 18 month old. Just curious, are we in the worst of it? Does it get worse before it gets better? I really want to try not to give him oral meds, but the topical creams and vaseline, ointments, lotions, etc don’t seem to be helping at all right now! Its like the prescription topical creams work for a week or so and I think he will get better, then we take 2 steps backward. There is very little area on his body without a rash. Or should we just try oral meds? I’m just nervous to do oral meds. Has anyone’s kids had major side effects from them?”


Ranae G — Brandon, Mississippi; March 25, 2019 (40 comments)

Looking for advice! We are waiting to see a pediatric dermatologist on April 30. My Emma was just diagnosed with PRP. The worst places are her hands/feet. Usually doesn’t bother her much, just looks painful. (X3 months). Yesterday they have started cracking? Maybe. And she’s complaining of them hurting. Any advice on what would help best with her discomfort/cracking of her hands? We are currently applying steroids AM & PM.”


(4) PRP & KIDS

Samantass S — Lithuania; March 10, 2019 (39 comments)

“Our girl was biopsied and got confirmation that we have prp. “


(5) PRP & KIDS
Janine R — Medinah, IL; December 8, 2017 (20 comments)
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“It’s officially been one year since PRP (unwelcomingly) entered our world, and I find myself reflecting on what a year it has been! I am thankful for this group everyday for all of the support and knowledge you’ve provided. Jacob has made great strides over this year thanks to his amazing dermatologist, and his Momma has become stronger and been able to cope thanks to all of you. While I know PRP may come back to visit over his lifetime, I’m going to appreciate this “calm” period. Thank you to all of you from our entire family! Here’s Jacob’s virtual hug to his PRP family.”

(6) PRP & KIDS
Jessica N — Rochester, New York; July 8, 2018 (18 comments)
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“PARENTS OF BABIES WITH PRP: I need help. Just someone to talk to. I knew it was going to be hard. I have had prp for 32 years. But to see my one year old with it!? I don’t know how to manage. I’m struggling. His hands and feet are cracking. Sloughing hands on a one year old, heartbreaking. I know my posts are becoming more and more current but I just need to talk to someone who understands. My poor husband and parents don’t know what else to say to me. I’m considering some sort of grief counselor for coping mechanism. I don’t know what else to do. I literally cry every day.”

(7) PRP & KIDS

Kerstin F — Frankfurt, Germany; November 3. 2018 (66 comments)

“This is my 2.5 year old son Louis. The first pictures are from August 2018 with MTX. The second from October 2018 after discontinuing the medication. We decided to take a living without medication and change the diet and switch to homeopathy. As you can see with success! between the pictures are 2 months and my son is finally happier and has no more pain.”


(8) PRP & KIDS
Annemi P — Cape Town, Western Cape, South Africa; December 29, 2018 (42 comments)
“Hi there…i have a 7 year old son, Noah, diagnosed with PRP Type 4. It has affected his elbows, knees, hands and other patches on his body but his feet have suffered most. In September the skin on his feet hardened, cracked and it all came off as thick skin shed. Then it continued to crack and bleed until now but the skin never thickened like it did in September. What have others with painful feet found to be most soothing? What are other parents with kids doing where schooling is concerned? His teachers at school have not been very understanding or supportive so we also have to decide on the best way forward for Noah. I want to make it as comfy as possible for him!

(9) PRP & KIDS

Love R — Austin, Texas; February 22, 2019 (28 comments)

“My baby will be turning 3 in May, she started with a small rash around her eyes and mouth In november after having a virus. We had a skin biopsy done after 3 hospital visits , her rash has now spread. Doctor has gave us some Tazorac to mix with aquaphor but her skin has begun to thin out. Next visit we will be talking about oral medication. He mentioned a medication that interferes with bone growth, I was wondering if any other parent has any medication that has worked on their children or any negative side effects. It’s hard to find any information on this skin disease when it comes to small children.”


(10) PRP & KIDS

Stephanie D — Colorado; February 20, 2019 (85 comments)

“Hi All, my son was diagnosed with PRP less than a month ago. He just turned 18 months old. His rash started around January 3rd on his face and forehead, then a couple days later the palms of his hands and sole of his feet became bright red, hot, and painful. They started peeling a few days later.” Follow link to full post.


(11) PRP & KIDS

Ginny M — Lexington, SC; February 16, 2019 (16 comments)

“New people! The photos are of my , now 14 year old sons, they presented with prp by age 4 weeks. We went through just about every treatment until we found Stelara helped the most. Please keep faith and hope.”


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