Wednesday, May 14, 2014

May 11, 2014 - A Minor Victory

On the ITSAN forum, member “JellyfishMama” posted the following about a brand new company, Baby Pibu, marketing a skin care line for babies. One of the products, "Rash Relief" contains topical steroids. This really upset me, so I dropped a bunch of 1-star reviews on Amazon, as did other members of ITSAN. Below is JellyfishMama’s original post on the ITSAN forum, followed by an email exchange I had with Baby Pibu.

It’s a good read, but the executive summary is this: From Baby Pibu, “Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time.”

What will happen over the long term and whether or not Baby Pibu will also eliminate the kits it sells with Rash Relief remains to be seen, but I’ll tell you this much: Baby Pibu is my new hobby.

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JellyfishMama
Semi-Newbie

Baby Pibu Rash Relief: a steroid cream being marketed for babies/newborns
« on: April 16, 2014, 11:13:20 PM »

My mom called me horrified today. She has just recently realized my daughter's TSW is a big deal and a miserable experience and is thus starting to do lots of research. She came across an interview about a new product line called Baby Pibu being touted as created by a mom dermatologist, all-natural and safe for newborn skin. There is a rash cream for eczema, and when my mom hopefully investigated it, she found that is 1% hydrocortisone. Here's their product description:

"Baby Pibu’s™ Rash Relief was specifically formulated with love by a dermatologist-mom with children who suffer from eczema breakouts. It should be used as directed in small doses to treat, nourish and care for inflamed, dry skin and eczema affected areas. You can be confident that this formula is safe and gentle for newborn skin and rest assured knowing that it will soothe their sensitive skin without risk of further irritation."

https://www.babypibu.com/products/treat/rash-relief/

I get that it says to use as directed in small doses, but seriously. Not okay. I can just imagine how many babies are going to end up here on ITSAN the hard way down the road because of this. :-( Ia there anything to be done?

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Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, April 17, 2014 9:26 AM
To: Baby Pibu

I just saw that you are selling Baby Pibu Rash Relief with hydrocortisone on Amazon. Please, I beg you, read the review left by Amanda (not me) and educate yourself regarding Topical Steroid Withdrawal on International Topical Steroid Addiction network (itsan dot org) and see what thousands of people, including myself, are going through. To go through this nightmare myself is bad enough, but to see small children and babies suffer through this is heartbreaking. Topical Steroid Withdrawal, AKA Red Skin Syndrome or Steroid Induced Eczema, is a relatively new but very real and growing problem that is affecting thousands of people, including babies. You are literally marketing poison for babies.

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Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Tuesday, April 29, 2014 8:53 AM
To: Baby Pibu

I wrote to you on April 17th and I have not heard a response. I realized, however, that I did not ask you a question. So, here's the question: Assuming you have seen the Amazon ratings and have educated yourself on topical steroid addiction/withdrawal, do you intend to continue to manufacture, promote, and sell products for babies that contain hydrocortisone steroids?

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Return to Inbox Reply
RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Wednesday, April 30, 2014 12:18 PM
To: Dave Bupp

Yes. Baby Pibu’s products are developed by a board certified dermatologist and reviewed by a panel of physicians who have extensive education and experience with topical corticosteroids and the potential side effects thereof. It is important to note that eczema is not curable, however symptoms can be treated and precautionary steps can be incorporated into skincare routines to help protect sensitive skin from severe flare ups. In order to safely and effectively treat mild to moderate eczema flare ups, Baby Pibu’s Rash Relief contains a very minimal dosage of a topical corticosteroid called hydrocortisone. Parents can be confident that it is completely safe for sensitive skin when used as directed. Clear instructions for use are noted on the FDA regulated label as well as advisement to consult a physician prior to use. For more information on rash relief, eczema and hydrocortisone please see the posts on the Baby Pibu blog.

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RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp
Sent: Thursday, May 8, 2014 1:56 PM
To: Baby Pibu

Please read:

http://www.itsan.org/Research_Articles.html

Please visit these blogs from TSW sufferers and/or their children:

http://redskinsyndrome.squarespace.com/
http://steroidredskinsyndrome.blogspot.com/
http://misskittydefeatseczema.blogspot.co.uk/
http://thisitchylife.blogspot.com/
http://klinestopicalsteroidhell.blogspot.com/
http://theboythegreekfireandme.blogspot.com/
http://antisteroid.wordpress.com/
http://scratchymonster.blogspot.com/
http://topicalsteroidaddictionandcure.blogspot.com/
http://odvisnostodkortikosteroidnihmazil.blogspot.com/
http://skinofrose.blogspot.com/
https://healingthered.wordpress.com/
http://www.eczemancipated.com/
http://laleizel.wordpress.com/
http://pinklikeabeacon.wordpress.com/
http://curingredskinsyndrome.blogspot.com/
http://topicalsteroidwithdrawal.blogspot.com/
http://eczemaillusion.blogspot.com/
http://iowatsw.blogspot.com
http://tomatoskingirl.wordpress.com/
http://eczemaexcellence.wordpress.com/
http://ihatesteroids.blogspot.co.uk/
http://withdrawalofsteroidcreams.blogspot.com.au/
http://freshoffthebus.wordpress.com/
http://www.reddit.com/r/TS_Withdrawal/wiki/blogs
http://www.livingwitheczemaiscruel.tumblr.com
http://andtheearthshook.blogspot.ca/
http://kccd.wordpress.com
http://asteroidfreelife.blogspot.com/
http://journey-to-comfort-and-health.tumblr.com/
http://ajourneytohealingfromtopicalsteroids.blogspot.com/
http://eczemawithdrawal.wordpress.com/
http://greenteachocbanana.tumblr.com/
http://edenskin.blogspot.com/
http://amandatsw.blogspot.com/
http://www.35yearsofhell.blogspot.co.uk/
http://steroidfreeskin.blogspot.com/
http://tsweczema.wordpress.com/
http://eczema-suffers.tumblr.com/
http://i-have-eczema.blogspot.co.uk/
http://healthyskinjourney.blogspot.com/
http://itchyeczemalife.blogspot.de/
http://www.stoppingtopicalsteroids.blogspot.com/
http://topicalsteriodwithdrawl.blogspot.com/?m=1
http://willissnapshots.blogspot.com/
http://ateenwitheczema.blogspot.com/
http://www.itchyred.blogspot.com/
http://oregene92.wordpress.com/
http://eczemajourney.wordpress.com/
http://dreamingofanitchfreelife.blogspot.hk/
http://isaiahquinn.blogspot.com/
http://www.davestsw.blogspot.com/
http://keeganstopicalsteroidaddiction.blogspot.com/
http://justglowingwithhealth.com/is-your-child-suffering-from-topical-steroid-induced-eczema/
http://ekzemamalaysia.blogspot.com/2013_07_01_archive.html
http://life-with-eczema.tumblr.com/
http://estherminusts.wordpress.com/
http://mylittleredwarrior.wordpress.com/
http://warriorgirlbeatstopicalsteroid.blogspot.com/
http://fragilefacade.wordpress.com/
http://itchyred.blogspot.com/
http://skinmisbehaving.com/
http://atopiclady.wordpress.com/
http://catrstephens.blogspot.com/
http://steroidinducedmess.blogspot.com/
http://derekissteroidfree.wordpress.com/
http://ozzylovelots.blogspot.com.au/
http://thethickskin.blogspot.com/
http://lemonofftopicalsteroids.tumblr.com/

Please reconsider products for babies with steroids.

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RE: Product details inquiry from Amazon customer Dave Bupp
From: Baby Pibu
Sent: Sunday, May 11, 2014 2:30 PM
To: Dave Bupp

Baby Pibu sincerely empathizes with your skin condition and others belonging to ITSAN. We appreciate your introduction of ITSAN to us. Dr. Amy has personally treated patients such as you and understands what you are going through. Baby Pibu and Dr. Amy firmly do not advocate the chronic use of topical corticosteroids for treating eczema, mild to severe. Baby Pibu and Dr. Amy's mission is to educate new parents on common skin conditions and help them recognize, prevent/protect, and treat these common skin conditions safely at home. Dr. Amy has personally touched base with and talked with Dr. Rappaport in the past week. They had a nice discussion dermatologist to dermatologist involving the concerns of misuse of a product such as Rash Relief. Dr. Amy conveyed Baby Pibu's mission to Dr. Rappaport and appreciated the mission of ITSAN from Dr. Rappaport. Dr. Amy and Dr. Rappaport will continue discussions as needed. Appreciating the concern of possible misuse and abuse of Baby Pibu Rash Relief despite Baby Pibu's efforts to educate the consumer of how and when to use it, Baby Pibu has taken Rash Relief off the market at this time. Baby Pibu is in discussion with medical groups and will seek further medical advice on the eczema kit. The instruction card in the eczema kit has been found to be extremely useful in educating parents/consumers about eczema and the importance of daily care and protecting the skin. Preventing and treating eczema with non-steroid ointments such as Baby Pibu hydrating ointment are advocated as most important. The card also details corticosteroids and warns of the side effects of them as well. Consumers are instructed to consult with a physician prior to using on any child under the age of 2 yo and instructs to limit use to 2-3 days. Baby Pibu hopes you and ITSAN find victory in the end of individual sale of Rash Relief. Baby Pibu also hopes you will stop posting negative comments to its paying customers whom have no personal connection with Baby Pibu. Believe it or not, Baby Pibu has its followers who believe Baby Pibu and Dr. Amy is trying to do some good through skin care education.

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[EDIT 5/14/13:30: Added the following response]

RE: Product details inquiry from Amazon customer Dave Bupp
From: Dave Bupp)
Sent: Monday, May 12, 2014 8:38 AM
To: Baby Pibu

Thank you for your concern and prompt action regarding removing Baby Pibu Rash Relief from the market, at least in its standalone version. The fact that Dr. Amy and Dr. Rapaport are having discussions is great news. I believe that Baby Pibu truly cares about its precious tiny customers and that your new and continued awareness of topical steroid withdrawal will have a positive impact on their future.

I want to clarify a couple things. First, please understand that although I am a proud member of ITSAN, I do not represent it in any other way. The action taken by me and other members on Amazon was of our own accord and should not be assumed to be representative of ITSAN.

Second, I stand by my reviews and comments on Amazon. Whether as a result of Baby Pibu employee’s direction or not, the barrage of 5-star reviews beginning on May 8 was a stunning example of opinion spamming. Although I will continue to respond to those reviews and comments as I see necessary, I will do so with the newly found respect that I have for Baby Pibu and its actions.

Finally, and I know this will come as no surprise, I will not be satisfied until topical Steroids are removed from all baby care products from any company, including Baby Pibu Rash Relief being part of the “Pibu’s Soothing Eczema Care Kit” and the “Baby Pibu Newborn Essentials Skincare Kit”. My assumption is that the standalone Rash Relief product was the easiest to remove from the market and that repurposing and repackaging of kits and gift sets may take some time.

I am hopeful that Baby Pibu’s awareness of topical steroid withdrawal and continued communication with experts such as Dr. Rapaport and “TSW Warriors” such as us on ITSAN will result in a new direction for Baby Pibu that will be of great benefit to your company and the future of babies suffering with eczema.

Thanks and kind regards from Texas,
Dave

7 comments:

  1. Dave I am considering this cream for my daughter but worried it may have steroids in it, would you mind looking at the ingredients and letting me know? I know you are busy. Some of the ingredients are foreign to me. Thanks for any help...: )Mustela Stelatopia moisturizing cream

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  2. Hi Alisa! I'm no expert, but I don't see any steroids in there. I'll post the ingredients to see if anyone else is concerned about them: Water, Glycerin, Petrolatum, Hydrogenated Vegetable Oil, Cyclopentasiloxane, Caprylic/Capric Triglyceride, Sucrose, Distearate, Dextrin, Helianthus Annuus (Sunflower) Seed Oil Unsaponifiables, Prunus Domestica Seed Extract, 1,2 Hexanediol, Euphorbia Cerifera (Candelilla) Wax, Squalane, Sucrose Stearate, Dimethiconol, Glyceryl Caprylate, Xanthan Gum, Glucose, Sorbitol, Citric Acid, Ceramide 3, Phytosphingosine

    Quite a list! Have you tried just sunflower oil?

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  4. Thanks Dave! You are awesome to check that for me. I wrote the company an email and got a reply this am ...we do not use steroids in our products...
    No I have not tried sunflower oil but read a study that it is excellent for excema.
    I am having luck with real zinc ointment. Not the kind in stores but a pure form I purchased online. Hope you are healing...love to read your blog. 4 months in here. :)

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    Replies
    1. Please do not advertise on my blog. :-)

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  6. Good on you Dave :)


    http://rubyredandtsw.wordpress.com/

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