Staphylococcal Scalded Skin Syndrome Remedies

This is about my baby daughter, Fiala, who is 14 months old. She has been ill in one form or another, for her whole life. We have seen a slew of doctors, and have had a lot of misdiagnoses, or treatments that have attended to symptoms, but up to now, no one has found the root cause. However, a friend who is visiting in town, who is an MD (who is very friendly to homeopathic treatment) took one look at her and said that she has Staph Scalded Skin Syndrome. Looking into systemic staph problems, it is likely that she also has bacterial enterocolitis.

Fiala's first symptom was nonstop diarrhea that started at about 2 weeks of age (in Nov '08). I have celiac disease, and as she exclusively nurses, Fiala's diet was gluten-free. I started taking more and more things out of my diet in order to clear up her diarrhea, starting with all dairy. It improved her digestion, but only minimally.

In Jan '09, when Fiala was 2 months old, she got her first "patch" on her face -- I don't know what else to call it. The pediatrician thought it was eczema. I was unconvinced. Her skin continued to worsen (and diarrhea did not improve) even though I removed just about every allergen I could think of.

Here is a blog post of mine from June that has a pic of her face. She has similar lesions on other places in her body -- currently on her face, legs, and a bit on her privates: http://onlysometimesclever.wordpress.com/2009/06/26/believe-it-or-not-this-is-an-improvement/

The thing that has helped best has been a Total Elimination Diet. We have been on that (together) for almost 4 months. We are currently eating only lamb, buckwheat, garbanzos (and most other beans), blueberries, and cabbage. We also use olive oil, fresh rosemary, cinnamon, stevia, sea salt, and a very small amount of honey. That's it. This diet has mostly cured her diarrhea, but has only had nominal effect on her skin.

I occasionally take a multivitamin, but because Fiala's reactions are SO BAD to everything, I am scared to put anything in my body. I do take a daily probiotic -- I finally found one that is rice/corn/soy/milk free.

I have tried LOTS of topical natural products/ingredients. TONS. I'm sure I can't remember all of them to list them, but I'll try: chamomile tea, gentian violet, manuka honey, organic super-enriched honey, homemade salve with beeswax & olive oil, turmeric - externally, oh... my memory fails me, but ask me, and chances are, I've tried it.

I have also used prescription products, sparingly, out of desperation, including triamcinolone, Protopic, and Atopiclair (which is actually all-natural but for some reason is rx in the US). She has been one one round of antibiotics, in Feb '09, for RSV (this is AFTER her first skin/digestive problems), and one round of systemic antibiotics for impetigo (which is staph, obviously, but the abx only nominally improved the lesions, and at that point, I was not willing to continue the abx).

The "best" that conventional docs could suggest is that she just has REALLY extensive, violent allergies. This is why we're on the TED -- it was suggested to me that if I do anything else (including putting her on elemental formula), she'd likely end up with a g-tube. She has tested positive to 17 foods (no environmental allergies), identified both from RAST testing and 3-day patch testing. After eliminating those 17 items, she still had problems, which is why I went on the TED.

My doc-friend said that it's likely that Fiala does have some underlying food allergy problems, but that the systemic staph is exacerbating her symptoms and reactions. I know she has allergic reactions and/or tested allergic to: soy, milk, egg, rice, potato, corn, banana, peach, pear, garlic, zucchini, sorghum, onion, coconut, mushroom, carrot, apple, and corn (plus she's been off of anything with gluten since I was pregnant with her, as I have celiac disease).

My doctor friend went out of town... I'm waiting to talk w/ her again, because after looking into SSSS and bacterial enterocolitis, that looks VERY hopeful. Pics of other infants that I've found online with SSSS look identical to my daughter's. Also, bacterial enterocolitis can cause carbohydrate intolerances. And, while Fiala has problems with proteins, too, her most violent reactions have always been to sugars/carbs.

Right now, I'm giving her a daily warm bath to which 2 cups of vinegar have been added (my doc friend told me that if I acidify her skin, the staph bacteria can't grow there). I am also back to painting her worst skin spots with gentian violet.

However, my biggest questions are: How do I treat her systemically? We have a very limited diet; I am frankly scared to feed her anything. She does drink water, and I have been putting about 1/8 tsp turmeric in it, daily, for only the last 4 days or so... she doesn't like the taste, though, and it's hard to force-feed a baby!

Is there anything else that ANYONE can recommend to either treat her skin or, most importantly, rid her body of the staph that is wreaking havoc on her internally?

Again, I still have to consult with my doc friend, but I want, if possible, to combine her homeopathic/conventional recommendations, with recommendations I receive on here.

I have done several searches here on Earth Clinic, but have not found any post that addresses her specific problems. To the best of my knowledge, Fiala does not have MRSA, nor any boils, and much of the suggestions given to adults with staph will not work for her. (For instance, she is alarmingly allergic to garlic -- it causes blisters on her skin.)

Thanks in advance for your help!!!

It's impossible to test for EVERYTHING, but we did have Fiala prick-tested for dozens of different allergens, including lots of environmental allergens: mold, dust, different pollens, pet dander, etc. She tested negative to all of them. Frankly, that didn't surprise me, as all of her reactions seemed to be delayed-response, and most environmental allergens are fast-response.

I have used organic/environmentally sound/nontoxic cleaners in my home for... seven years. This past year, I even started making my own laundry detergent (from real soap, borax, and washing soda), and I have long used 1/2 cup of vinegar as a rinse aid in an extra rinse cycle...

I hope you don't feel like I'm shooting down your suggestions -- I just wanted to let you know that we have tried/considered everything you've mentioned... although it's SO SO SO easy to miss something, and it may well turn out that she does have some as-yet-unidentified environmental allergen.

I am now trying to find out if there are any side effects to this disease as an adult... If a person could still carry the disease in some way. The only problems that I currently have are that my ears every once in awhile break out just like the explaination of scaled skin syndrome, redness, peeling, pain and then it's gone. Then some of my fingers react to something that cause blisters, pain, splitting of the skin, peeling, swelling, and then their fine also.