Dietary Changes
★★★★☆
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!!!
My heart goes out to you and your precious one.
I suffered from every ailment you describe except that my skin rashes were not so severe and hayfever had become a year round occurance. I tested positive for every food and plant intolerance that I could be tested for both through conventional medicine and alternative practises. but nobody came up with any cure. It looked as though I would just have to live with it. After moving home (only about 8 miles) most of my problems dissappeared only reapperaring for about an hour or 2 at a time. Thinking this was kinda strange I went back to my consultant (felt stupid saying "I'm better - whats wrong"). He reckoned peace of mind was a factor. Going back through some of my medical records last year I noticed that one of my allergic reactions was to a particular tree which is so abundant in the area where I lived with my mother. So I went in to her house and did about 6 hours of gardening for her - came home and wanted to die for about 3/4 days. Diarrhea, stomach cramps, chest and nasal congestion, joint ache (didn't do that much heavy work) and skin itch and bumps.
Is there any chance that your daughter is suffering an "outside " allergy that could be triggering the rest of the intolerances. Some plant, paint or laundering product.
This may not be of any help but I really do wish you well in you search for an answer and hope you find it soon to ease your mind and life.
(Amsterdam, The Netherlands)
12/31/2009
Hello Karen Joy, I read your post and saw your daughter face and it looks very similiar to the condition my daughter had as a baby. It started when she was almost 4 month old, got progressively worse and looked horribly most times when she could not help herself due to scratching. I had similiar treatments prescribed- triamcinolone - as you have mentioned but nothing worked really well especially when her cheeks looked like an open wound. I became afraid that the diagnosis of impetigo was wrong as there seemed to be some uncertainty. I was most afraid of all the drugs being used on her delicate, troubled skin.
Anyway, I decided to give her baths with only Apple Cider Vinegar (non-processed and organic) no specific measurement just using my gut instinct as I was also afraid that it could be too harsh. After her bath I would gently apply uncolored iodine about a drop or two to each cheek, thereafter Virgin Coconut Oil (VCO) sometimes Vitamin E as well - but I was not consistent with the Vitamin E. Actually I would apply VCO very often and sometimes I would put a 1 teaspoon in her formula or food or directly in her mouth - she loved it. I did no adjustments to her formula nor when she started solids - however I had stopped breastfeeding at 3 months. In my case I wondered whether she was affected by the formula. I did continue using the triamcinolone sparingly when the wounds were closed but always with the protocol as mentioned.
To be honest, I do not remember when it all cleared up (she is now 2 1/2) but I do know her skin was perfect on her first birthday. I must say that it started to return when she was 1 1/2 - I did not return to the dermatologist - I did the same routine and it went quickly away. I now cook using only VCO for the whole family - I feel somehow that this was a key factor - her condition is certainly history.
I can totally empathise with what you are going through but I always thought that she would get better. I did not care about the stares, comments etc. I was very proud of my beautiful baby although concerned about her skin. I hope this will assist you - it might just be worth a try.
All the best,
Mo
(Peoria, Az)
12/31/2009
Thank you, Tricia.
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.
(Hamilton, Ny)
03/02/2011
I was diagnosed with Scaled Skin Syndrome (Ritter's Disease) when I was about 1 1/2 years old. I had 2nd and 3rd degree burns over 100% of my body. I am now 34 and have no scars, my skin seems to be very sensitive, but otherwise, I'm fine. All I know is that I had 24-48 hours to live depending on how the infection turned, I was in reverse incubation. I really don't know what the doctors did.
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.
(Woodbridge, Virginia)
05/26/2011
Staphylococcus Aureus Remedies
(Tennessee, Usa)
11/10/2013
Dear Annabelle,
I am so sorry you have been dealing with this for such a long time!
We have sucessfully treated staph infections of the skin with the spice turmeric taken internally. You can take 1 teaspoon twice a day for this. Some put it in milk. I really don't like the taste, so I prefer capsules. 4 capsules twice a day would be the same as 1 teaspoon twice a day.
Raw Unpasteurized Apple Cider Vinegar has helped some people with candida and with infertility (and hosts of other things! ) It would be a safe and inexpensive thing to try. Try a 2-3 teaspoons in 16 ounces of water and sip it through the day.
Red Raspberry Leaf tea is also excellent for fertility and would not be harmful to your conditions. You can drink 3-4 cups of this a day.
Reducing processed sugar (if you haven't already) would be helpful to your conditions. Processed sugar reduces immune function so your body will fight sickness less and sugar feeds candida.
I hope you will find a cure soon and that you will be able to get pregnant. Please keep us posted and let us know what helps you.
~Mama to Many~
(Nigeria)
11/11/2013
Dear Mama to many, thanks for being a mama to me. Will start with the turmeric and Apple Cider Vinegar immediately while I look for d red raspberry . Thank you for answering so promptly.
(Nigeria)
11/16/2013
Dear Mama to Many,
I want to report on the regimen u prescribed for me. I had been using Ted's alkalining formular of lemon and baking soda for a few days before you told me what to take. I thereafter started with ACV as instructed daily and turmeric. However, I couldn't take d turmeric with milk but instead took it wt honey and some black pepper cos I read somewhere that the pepper aids absorption.
Interestingly, the spots on my labia where I hv d recurrent boils dt never mature immediately became sour and opened up for the first time. It wasn't deep but was painful, sour and open though flat. I started to use turmeric mixed with honey on the area and they dried up, became less painful to the extent that now it feels and looks like little grazes that have sealed up in the process of healing. I am truly amazed cos, I have always felt the boils come and go but never open up and heal like this. I am praying that it means my infection is going. My doc gave me a long list of antibiotics but...i hv been there and done that and am still here so I intend to give this protocol 1 more week and retest.
Pls what do u think?
(Tennessee, Usa)
11/16/2013
Wow, Annabelle, that sounds very encouraging! If the infection has finally come to a head and is now healing, that sounds good. I think the turmeric and honey topically was a good idea. I think it is a good idea to continue treatment for another week. When I have treated Staph in my children (and even my goats! ) I have found it best to continue treatment for a good week after healing is complete to prevent repeat infection to make sure the infection is truly gone. I feel comfortable extending treatment when using things so safe as vinegar and turmeric.
Thanks so much for reporting back on your results. I will look forward to hearing how the re-testing goes. God bless you!
~Mama to Many~
