Hi everyone,
I'm new here...brand new! This is my first post. Hubby and I both have KP, but have never had an official diagnosis. Our daughter is three and a half years old and was just diagnosed with it. It started out over a year ago as a rough rash on the back of her upper arms. Her pediatrician said it was probably eczema and told us to moisturize and use a cortizone cream on it. We saw no improvement, but her Dr. would never make a diagnosis other than "probably eczema". Over the last three months this "rash" has spread to cover her arms from shoulders to wrists, her tummy, her legs down to her ankles, above her bottom and in scattered spots on her back. Her groin area seems pretty bad, as well. The itching of her arms, inner thighs, and stomach wake her up several times a night, and her outsides of her wrists are scabby and bleeding because she just can't stop scratching. We finally got a referral to a dermatologist. He took one look at it and said she has eczema in a few spots, but her main problem is KP. He prescribed Protopic ointment 0.1%. The info from the pharmacy says not to use that strength on children her age. He said go ahead. We tried it and she sobbed when it hit her arms. She cries when we put any kind of lotion on it...but she said the protopic was burning and begged us to stop. We tried to do what the Dr. said...apply 2x day...but now her rash looks even worse! She is digging her skin raw and it breaks my heart to have no way to stop it! We are fairly low income, and just spent $80+ out of pocket for this ointment in an effort to help our daughter. Is it supposed to get worse before it gets better? Are we doing something wrong? Please help!!!

Cadi,

We like to think our doctors know what they are doing, but in this case, I'm not sure. How many days have you been doing this treatment? If she were my daughter, I'd stop this treatment, but you will have to make your own decision. It sounds like the treatment is causing her more pain that KP.

Read the newspaper article that was just scanned this morning. Go to "General Discussion" and look for the topic "Article in Newspaper". Scroll down to find post #5. Everbody needs essential fatty acids, and they are available in doses for children. Also, the yogurt/lemon juice treatment described in the article may be mild enough for her, but be warned that lemon juice can burn sensitive skin. Her skin needs to heal from the scratching before you put anything with acid on it.

I suggest you read everything in Parents Corner to see what other remedies are being used with success.

I hope others answer you here with suggestions. It is heartbreaking when our children have to suffer.

kebod

Hi Cadi,
I am sorry to hear about your bad experience. My 2 year old son has KP. We also initially looked into medications and were prescribed Salex by a pediatric dermatologist- a salyicylic acid cream that is supposed to slough off the bumps- all it did was make my sons skin irritated. We were also prescribed a cortisone cream but we never used it. After a few months, we stopped the Salex and just took more of a natural approach - we moisturize (we love emu oil, extra virgin coconut oil, and a cream called vanicream), take luke warm baths every other day, use a humidfier in his room at night, and he takes 4 teaspoons of organic flaxseed oil a day. Initially, I so overreacted about his skin. I now just feel grateful that he doesn't have something more severe than KP. His skin looks so much better than it did when we were using Salex.

I wish you luck with your daughter.

Q

Elidel Cancer and Protopic Cancer & Lymphoma Side Effects Warning by FDA , Eczema Cream Drug Possible Cancer, Tumor and Lymphoma Risk Issued by FDA Warning for Eczema Drugs Talk to Lawyers Attorneys about Elidel, Protopic Lawsuits

Read this. It's about elidel and protopic. It's set to be taken off the market soon.

HTH

Hi,I'm pretty new to this as well & my 9 month old daughter's has KP.It doesn't itch or flak or scab up though.It does however look terrible & covers her shoulders, the backs of her arms & butt,top of her thighs & it's starting to trickle down to her forearms & calves.
A similar thing happened to us when we started to notice the rash.The doctor have us the Cortisone cream & said it was exzima(sorry bout the misspelling on that).It kept getting worse even looked like she had bruises on her back & shoulders from the brownish spots she was getting.Finally we took her to a dermatologist.She told me that a baby's skin is to thin to use any kind of acid or do to much scrubbing etc.She said that my daughter was probably going to have this the rest of her life & basically told me to get use to it.
Therefor I started to do my own research (as you have) & found this site as well as other information.I went & bought(believe it or not

"Gold Bond Ultimate Softening"skin therapy lotion

After reading every ingredient on every bottle in the store,I realized it had a lot of the ingredients that i ran across while studying KP.The "Urea(2 different kinds,vitamin A,C &E,Shea Butter etc etc".It actually does work wonders as for keeping her skin extreamly soft.Then I got the doctor to give me this lotion with Lactic acid in it ...

(prescription)Ammonium Lactate Lotion 12%

I only put that on once every other day even though the bottle say's to do it twice a day.It doesn't seem to bother her at all,but like I said her skin isn't open or sore anywhere.It's worth giving it a shot.
At least try & let her skin heal.Find something to sooth her itching....maybe something natural.I strongly believe in natural medicine.Like putting oatmeal in a rag & roping a rubber band around it to close it inside,then leaving it in the bath tub with her.That sooths skin very well.There are many other natural things to try.Also that Gold Bond Lotion really works well & if her skin is softer (truly)then it might not itch as much.
Good luck & yeah,definitely stop what your doing now.Sometimes pain is not the way to gain.
Sincerely
Smilindaisy07