Poor baby, and mama! My mom said my cousin had reactions like this and they took him off everything and would only give him bananas for days to help clean out the system. Then slowly add things back into his system. I hope you find the answer and a solution for her.
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.
Yep, this could be a picture of my D. This answers a lot of my questions. I'll write you soon.
Post by asoctoberfalls on Feb 1, 2014 8:55:28 GMT -5
Hugs to you, @kami. I hope you find answers. Sometimes, for eczema, there are none. Discouraging, but true. I do EVERYTHING right, and I still have outbreaks, though not as severe as your daughter's. Fortunately, almost all kids outgrow it, and I pray she's one of them.
Post by SpartanGirl on Feb 1, 2014 10:45:27 GMT -5
((HUGS)) Kami. I hope you find a solution soon! I stopped nursing my DD at 3 months and switched over to the Baby's Only as her only source of nutrition. She really did thrive on it (though I know it's not technically a baby formula).
I hope you can find something that she thrives on as well. (((HUGS)))
Stupid question and I'm sure you've already tried it. But have you done a trial without the amber necklace?
We actually only recently got the amber necklace and it improved a lot for a few days, even though we made no changes to diet or medication. I was actually going to get her a raw one to see if it would help more.
Oh my gosh! I think I might have figured out what Kate has! Tinea incognito! A lot of the photos look just like hers. A fungal infection that was mistreated with steroids, creating a much worse condition. Me taking her off steroids at the beginning of the month was probably the best thing we could have done, then the new pedi was in the right direction with the antifungal shampoo, but it wasn't strong enough on it's own. Her getting thrush was possibly the best thing that could have happened to her! I'm going to follow up with her dermatology team and we will still have to deal with her food sensitivities, but if this is really what is happening, this would maker her life so much more manageable!
Oh my gosh! I think I might have figured out what Kate has! Tinea incognito! A lot of the photos look just like hers. A fungal infection that was mistreated with steroids, creating a much worse condition. Me taking her off steroids at the beginning of the month was probably the best thing we could have done, then the new pedi was in the right direction with the antifungal shampoo, but it wasn't strong enough on it's own. Her getting thrush was possibly the best thing that could have happened to her! I'm going to follow up with her dermatology team and we will still have to deal with her food sensitivities, but if this is really what is happening, this would maker her life so much more manageable!
I hope you're right and her rash clears up for you!
Hoping for fungus too. If not I was going to suggest something odd, but some people have an allergy to cold temperatures, or more specifically, cold water.
Hoping for fungus too. If not I was going to suggest something odd, but some people have an allergy to cold temperatures, or more specifically, cold water.
It was worse today, but we got our dermatology appt moved up from next week to this week. Hopefully we will get some answers there.
I highly doubt that it is a reaction to cold temperatures, since we've been dealing with this since June of last year. We always use warm water as well. Never cold or hot.
Hoping for fungus too. If not I was going to suggest something odd, but some people have an allergy to cold temperatures, or more specifically, cold water.
It was worse today, but we got our dermatology appt moved up from next week to this week. Hopefully we will get some answers there.
I highly doubt that it is a reaction to cold temperatures, since we've been dealing with this since June of last year. We always use warm water as well. Never cold or hot.
That's so frustrating! Good thing you can move the appointment to earlier. It's also weird to me that whenever you tried something new, it got better and then got worse again.
Oh my GOSH. I just read her whole blog, and I am so angry on her behalf. All of those doctors are brushing the mom off and ignoring what she's saying. That poor sweet baby looks like she's in agony, and no one seems to want to help her.
Oh my GOSH. I just read her whole blog, and I am so angry on her behalf. All of those doctors are brushing the mom off and ignoring what she's saying. That poor sweet baby looks like she's in agony, and no one seems to want to help her.
Yes! Holy shit. That baby and family have been around in circles with docs. I can't believe no one can figure it out. How incredibly sad.
Oh geeze......her journey sounds so much like ours, except we don't get the super violent eczema. Quite frankly, I'm having the very best luck with a GI. He is working through everything with us and swears we won't stop until we have a diagnosis. (Bad eczema that does respond to steroids, vomitting/reflux, diarrhea) My recommendation is to do whatever you can to be seen by a GI. Mine says that the skin pricks done before the age of 2 are unreliable at best, especially with the negatives.....says we can't even test until then.
Anyway, my thoughts are with you, Kate!! But your Mom is going to figure this out, I know it.
Thanks. I had read up on this back in November and It was a big concern of mine, especially after she had been on steroids for about six months at that point. I really do think she did go through a withdrawal in December when we took her off of them for good. She initially got much worse, but over time it did get a little better. The new dermatologist we went to finally agreed that if her skin is improving without the steroids, it's hard to justify using them. He kept praising the PA we were seeing though, so it really sounds like he may push us off on her after the tests he ran come back. I'm just so frustrated that doctors keep pointing the fingers at other departments, while some of them won't even see us. We have tried everything we can to get into a GI and they continue to refuse to see us, since she isn't spitting up. She's been losing weight too and still, they will not see us.
I have a lot more details to add to the blog post and then I was going to try sending it to various TV shows, in hopes to get some visibility to it and doctors that are more willing to help find a cause, instead of just treat the issue unsuccessfully. I have gotten lots of great suggestions so far, but most are things we have already tried.
huge hugs. I always check this post hoping one day there will be a victorious post with a solution and an awesome dr.
I'm so frustrated you cannot get into see a g.i. even with a referral? or will they not give you one? it just doesn't make sense. the medical community is failing you in such a huge way.