Poor baby, that looks so painful I would tend to start looking beyond food allergies as well and focus on environmental. Dyes, fabrics, chemicals she may come into contact with like @ojo mentioned wood in the crib or varnish.
I would also be concerned that the allergy may be compounded by an allergy to the treatments. Is there any way they could get to ground zero and start over? Have a period of time with no ointments or oral medications. As you mentioned some treatments have seemed to make it worse.
Also, this may be a very stupid question. But has she seen an allergist? I saw mention of dermatologists etc. Maybe I just missed it.
-how long is she giving treatments or removal of foods to work? It can take weeks for improvement when an allergen is removed and for an area that bad to improve -I would switch back to prescription formula (whatever they use for MPSI). Soy Is a very common allergen -has the area been cultured? It looks like there is an underlying strep infection. Steroid cream is only going to make an infection worse. It needs to be a steroid and antibiotic cream combined. You are limited to what strength you can use on the face so it will take a few weeks to improve -has she gone to a major children's hospital or a hospital affiliated with a large university? She needs to see someone who has seen rare cases. (It looks like a few recommendations have been given) -lastly, it may be worse when she wakes up b/c she is scratching/rubbing at night. Do they put gloves on her hands at night? Do they have a video monitor to see if this is happening?
I am sure this is a very frustrating experience. I hope she gets answers soon. (I am also not sure if Dr.Oz is the way to go...)
My daughter had a similar open wound on her face for months that would heal and reoccur (it only impacted one cheek), I thought it was just eczema but a friend who had a child with food allergies suggested that might be the cause. Through a strict elimination diet I found out she had a milk allergy, that she was getting through my breast milk and through her cereal. So I agree it could be food allergies. It sounds like they have tried elimination diets? It can take several weeks for an allergen to clear your system so it is not a fast process at all. I agree with all the suggestions to find a new doctor or team to investigate. I would also try the suggestion to eliminate soy. Poor baby I wish this was a simpler process for her.
No advice, just hugs for your friend. That poor little baby! I hope that the wonderful suggestions from all the posters will somehow help that little girl.
Post by dancingirl21 on Jan 23, 2014 9:06:18 GMT -5
I haven't read all of the replies, but are they using anything to wipe her face like baby wipes? I have heard that some have chemicals that can cause reactions on the face specifically.
I feel so bad for that baby and her parents. I think PPs have had some great suggestions. I would lean towards a food allergy or contact allergy, either to her sheets, something on mama that she comes into contact with when BFing, or an allergy to the nipples or bottles they are using.
Post by asoctoberfalls on Jan 23, 2014 9:13:43 GMT -5
These situations are so tough because contact allergies, food allergies, eczema and other skin disorders can all manifest the same ways and make it very hard to determine what is going on. Sometimes it just takes seeing differenf doctors until you find one who has the answers. I saw 4 dermatologists last year, and the last one (affiliated with our world-renowned university research hospital) was the only one who even came close to the root cause of the problem. Under her care, I'm improving slowly. As has been mentioned, allergies can take a long time to clear (think poison ivy!).
Like runner09 said, she'll need a skin culture. I've gotten multiple patches of infected skin, and the treatment depends on the infection. I've had staph, strep, bacterial...and all have different treatments. Every time I get infected, I go in for a culture.
I'm just going to throw this out there, it might not even be a real thing. My ds is a super drooler teething or not. Whenever he's on the verge of actually breaking a tooth through he gets a bad rash on his chin. I've always wondered if the ph of his saliva changes to cause that reaction, like maybe it's more acidic or something. Anyway, it's like his spit is super toxic. When it's really bad I've had to treat with a steroid cream to get it to calm down (which I assume they've already tried on that little girl). That's all I've got.
are you sure it's an allergy? I have a friend whose daughter had absolutely horrible eczema - to the point where they had to constantly spray her with a water bottle, apply vaseline to her skin and keep her clothes wet (I guess all that helped with the itching). They never found a cure, they just managed the symptoms until she was a little older and she grew out of it. It looks a lot like the photo. I could definitely get your friend in touch with my friend to talk about things that worked for her.
"She was on keflex for a week, but had a severe breakout. I'm assuming from the sweetener, flavors, or corn in the syrup. She's been on a topical antibiotic since July and we do bleach baths too."
"I don't use soap on my chest, so I doubt it's soap residue. I use the same soap as her too."
"it's only bad on her face. Some of her crevices get red, but they are easily managed with moisturizer."
That poor thing! Poor baby and mama. Hope they figure it out. And soon.
DD gets red in the same area when she's allergic to something. Mostly contact. One time it's home made tomato sauce. Couple of times because of my facial cream that when I hold her, my face touches hers.
Post by SpartanGirl on Jan 23, 2014 15:34:06 GMT -5
That poor baby.
I haven't read the whole thread so forgive me if this has been suggested, but have they tried eliminating corn? DD2 had a corn intolerance. So many formulas were made with corn syrup solids that it was very difficult to find something that worked (even Neocate, which was a lifesaver for DS, failed). We found, through lots of searching, Baby's Only Soy Formula was the solution. It's made with rice syrup instead of corn syrup: www.naturesone.com/soy/ingredient-quality/
]My D looked EXACTLY like this. She is three now. Can you put me in touch with the mom? Thanks!!
I hope your DD found some relief. It will be so amazing if it turns out you can help.
Me too! My D still has issues but it's nothing like it used to be when she was that little. My heart goes out to them. It's not easy on baby or mama (or dad)!
Have any of their doctors mentioned irritation and aggravation from SLS? Sodium Lauryl Sulfate is hidden in a lot of products - she mentions using soap. It's in shampoos, toothpaste, detergents, etc. If it's not a food allergy, maybe it's a chemical.
I also wonder if this is an underlying condition like epidermolysis bullosa that someone mentioned earlier. Hopefully this is something they can catch in a more academic setting. Also going to throw out there if they have consulted with any Oral Medicine dentists or Oral Pathologists since this presentation is in the oral area. If they are in Seattle, there are department for both Oral Medicine and Oral Pathology at the University at Washington School of Dentistry. I'm hoping she can e-mail or contact them to find someone who has seen this before.
I haven't read the whole thread so forgive me if this has been suggested, but have they tried eliminating corn? DD2 had a corn intolerance. So many formulas were made with corn syrup solids that it was very difficult to find something that worked (even Neocate, which was a lifesaver for DS, failed). We found, through lots of searching, Baby's Only Soy Formula was the solution. It's made with rice syrup instead of corn syrup: www.naturesone.com/soy/ingredient-quality/
I hope your friend is able to find a solution!
Thank you so much for all of your input everyone!
She is mostly on breastmilk and we have been testing out formulas and diets for months. We are currently testing out the Baby's Only Soy Formula, after she has had severe, all body reactions to alimentum, neocate, elecare and other hypoallergenic formulas. The nutritionist think's it's a good option for supplementing and would be ok to switch to after she's a year. It's the first one she hasn't had a severe reaction to. We have recently tried goats milk, but she ended up getting a bad outbreak and blood in her stool.
We have gone on numerous elimination diets. She would immediately get better in a matter of days, then react to ANYTHING we added in, even the least allergenic veggies. While she may not have food allergies besides dairy, whatever is going on is most definitely aggravated by a wide range of foods. She just seems to become more and more sensitive. She has been allergy tested, but dairy was the only confirmed allergen. Almost all medicines make it worse, even benadryl and hydroxyzine.
We have also tried cutting out as many environmental allergens as possible. We got rid of our dog for a month, changed and even gave up all soaps and detergents for a time, removed all SLS and irritating chemicals. She also tested negative for dust mites, we don't use chemical cleaners, and doctors have said that her whole body would have broken out if she's sensitive to fabrics/dyes. She co-sleeps with me, since she wakes about every half hour or more to itch. Stress also seems to have an effect on it. We have tried a wide range of topical steroids. They even tried triamcinolone, which they usually think is a little strong for the face. She has been on Elidel for months. She has been seeing the dermatologists at Children's Hospital for months and they have been trying aggressive treatments from day one.
The culture came up clean, we finally found a pedi that would run a blood test a couple weeks ago and everything came up normal. Her D was low, but not deficient, so we've increased her supplement. We've even gone off all meds and supplements for a time and things continued to get worse. She is scheduled to get a patch test next week. They said it's a 3 day process and they've never done it on an infant there, so they don't know how accurate it will be. She also started an antifungal shampoo for her cradle cap that we put on her face and body, as well as an oral antifungal for thrush. We also stopped using vaseline on her face, since we it's only gotten worse since seeing the derm and we hadn't used vaseline before that. It has gotten slightly better, but still is pretty bad.
We have tried paleo, anti-inflamatory, failsafe, and gut-healing diets, but she continues to become more sensitive to foods. We used to use coconut oil as her moisturizer/anti-fungal, but now even a tiny bit gives her a rash. She seems to react to a lot of foods on the GAPS diet, so we have no tried it. I've been trying to find something that it could be besides eczema, but doctors keep telling me it has to be eczema. She also seems to have a lip tie that is getting worse, so she is getting evaluated next week. I am still working on my blog post about out journey to hopefully find someone to help. This was on a really good day last week. It's about the best we have seen since August/September.