Approaching your pediatrician

Olive Dante outlined the steps she took when approaching her pediatrician about Red Skin Syndrome (RSS) or topical steroid addiction/withdrawal (TSA/TSW) in her child. This was originally posted in the Facebook TSA Caregivers Rock! support group in October 2014 and reposted on in May 2015. (Reprinted here with her permission 05/09/15)

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Here are some of the articles that I printed for my pediatrician and a few more that I found recently. For anyone needing to approach their pediatrician, I suggest you print them out and highlight the important stuff, for your doctor to read. I sat down with my pediatrician (made a private appt and READ to her the highlighted notes). Doctors don’t always have time (or will take the time to read everything). So I’ll tell you what I found important in each article listed. I should also add, I had already consulted with Dr. Rapaport, who gave my daughter a diagnosis of RSS and a “treatment” plan in writing. So I brought that along too.

I printed out Dr. Rapaport’s clinical study, although it’s in regards to adults, it’s all about TSW – there is a section in it that discusses “corticosteroid withdrawal patterns” and it discusses flares and their symptoms. Here’s the paper: http://www.itsan.org/…/Rapaport_Lebwohl_Red_skin_Syndromes.…

This is an article by Dr. Rap – NOT clinical study but easy to read and it discusses how to distinguish eczema from RSS. I brought pics of my daughter’s skin looking as he describes – “atopic dermatitis typically has excoriated (damaged, raw) lichenified (thick, leathery) lesions in the antecubital (elbow crease) and popliteal (back of knee) areas. In contrast, patients with steroid-induced dermatitis have distant pruritic (severely itchy and wide spread) papules (small, raised bumps with rash) nummular (circular) wet lesions (ooze) and general skin vasodialation” (dilated blood vessels – think red sleeves or that hot red skin).

This really sealed the deal with my pediatrician because she could visually see it was no longer eczema. Here is the article:http://dermatologytimes.modernmedicine.com/…/topical-cortic…

Here is a great new research paper composed of clinical findings by Dr. Fukaya and a collection of other Japanese dermatologists. This paper answers all questions regarding TSW (in which the National Eczema Assoc has posed for their research). This paper also describes the difference between TSA and eczema. Lots of great info. Here is the article:http://www.dovepress.com/getfile.php?fileID=22021

The NEA’s announcement and Info regarding RSS/TSA/TSW:http://nationaleczema.org/education-announcement-topical-c…/

And here is the NEA’s report on their findings about RSS/TSA by reviewing current research literature available: http://www.jaad.org/article/S0190-9622(14)02209-9/abstract

http://www.ncbi.nlm.nih.gov/m/pubmed/25592622/

I also printed out the transcript to Dr. Rap’s news segment (edited – link no longer works to transcripts) here is the actually video in meantime:http://youtu.be/bU2_ikRu4kA

A few more articles that go over side effects specifically in children:

GENERAL SIDE EFFECTS – local & systemic:

http://www.ijpd.in/article.asp…

http://www.ijdvl.com/article.asp…

HPA-AXIS SUPPRESSION/ GROWTH DELAYS:

http://www.ncbi.nlm.nih.gov/m/pubmed/18183788/

http://www.fda.gov/…/br…/2005-4099B1_01_FDA-Backgrounder.htm

RESEARCH PAPER – USE of TS CAUSING RISE IN ATOPIC DISEASES:

http://www.medicinaantroposofica.it/…/atopia%20e%20cortison…

Hope this helps!

4 thoughts on “Approaching your pediatrician

  1. Please, can you help us, tell us the name of your Pediatrician, we are from Wisconsin and we exhausted all arguments, my daughter is suffering and we cannot see any doctors. After a 3day stay in the Children Hospital, she was wrapped in desoximetasone, while being already lethargic from 5 years of triamicinolone. Because we protested and we requested blood work, we were threaten with removal and, after we got home, we got investigated by the Child Protection services and by the Police for Medical Neglect. Our daughter cannot walk anymore and her legs look like your son’s: wrinkled, dry, as if she’d been mummified. We hope you’ll see our message.Thank you.

  2. Hi, can I ask if you have had Brian’s blood checked. Our Dr. wants bloodwork to see what damage steroids made. Hes also checking thyroid and vitamin levels.

    • Hi Lisa,

      We didn’t get blood work during the early months of TSW, but it was fine the past 2 years except for a slight elevation in eosinophils. That’s great that your Dr. wants to check to check thyroid, vitamin, and other lab values. I’m not well-versed on labs and blood work during TSW/after TS, but I know other mothers who are. Please let me know if you would like to get in touch with them, and I’ll connect you.

      Take care,
      Rosemarie

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