graphic photo of allergic reaction - a mom needs our help

[CloudBee]

A mom from my BMB (which is now a FB group) has been trying to get help for her daughter for MONTHS.  I posted her daughter's picture on here a while ago.  She just gave our group formal permission to share her photo with anyone/everyone as they are desperate, so I'm posting a newer photo.

They've see multiple doctors in the Seattle area, have tried natural practices, nutritionists, the works.

She's writing up a blog post with full details - her daughter's medication history (they've tried countless), food exposure, environmental information, and the 10'ish foods mom and daughter are currently eating in an attempt to avoid allergens.

She's on a special soy formula and breast fed.  They have tried multiple formulas and gone periods of time without BF'ing.

None of her doctors can figure out what's causing the severe skin irritation.  She has to be allergic to something, but they just can't figure out WHAT. 

There's talk on the board of bombarding the Dr. Oz show email inbox (or similar) with pleas for help from our BMB.  There has got to be a doctor out there, somewhere, who knows what's wrong.

I don't have a ton of information, but can provide some feedback if you have questions.  If you can help brainstorm or might have any feedback or similar experiences, please share.  I'm going to share the link from this post with her.

For now, here's her daughter's photograph.  Once she finishes typing up the medical history I will share that link as well.

[Deleted]

Oh my gosh. Poor baby. Poor mama. I wish I could offer something. I can imagine how helpless she feels.

[rikki]

I have no idea about allergies, but that poor little sweetie. I hope she finds answers soon.

[geek96]

Omg. That poor poor baby. I hope they find out what's causing that reaction soon.

[CloudBee]

Jan 22, 2014 22:04:57 GMT -5 @littlemoxie said:

Is this the only part of her body that has the reaction?

Yes.  Though I believe she has some eczema on other areas of her body.  But her face is the only place that is constantly raw.

[litasail]

Corn allergy? I have a friend whose child had something similar and it turned out to be corn, which is really difficult to control for because corn cross-contaminates everything.

[CloudBee]

I will add that this is also very uncomfortable for the baby. This picture was taken a few days ago in the backseat of the car. The mom heard her kiddo fussing a TON. When she finally got out of the car she noticed her daughter had been rubbing at her face and irritating it again. It's got to be really itchy/sore/uncomfortable.

[CloudBee]

Jan 22, 2014 22:07:33 GMT -5 litasail said:

Corn allergy? I have a friend whose child had something similar and it turned out to be corn, which is really difficult to control for because corn cross-contaminates everything.

Her current soy formula is corn free.  It took them a long time to find one that was corn free, in fact.

[CloudBee]

Jan 22, 2014 22:07:35 GMT -5 @this said:

That poor sweet baby.

How long has this been going on? Since birth? Are there times when it isn't irritated?

It's been going on almost since birth.  Since she was a month or two old, I would say.  (Based on how early on I remember seeing her posts.)

Sometimes they think a new steroid cream or medication is helping for a day, their hopes are up as her face starts to scab over or clear slightly, and then bam, overnight it gets bad again.

They've tried topical and oral meds, and MANY diet changes.

[oceanstbride]

Ugh. I'm so sad for her and for her parents who are probably so frustrated. I don't have anything to offer other than I'd be more than happy to help with any sort of "bombarding" that may happen.

[skib]

Bless her sweet heart! Is there anything they can do to soothe it? At first glance, it looks like my daughter's eczema, just 20 times more severe. Have they tried hydrocortizone? I'm inclined to think there's some sort of irritant in her environment and that it's not an allergy, because it seems like that severe of an allergy would cause lips, eyes, etc. to swell up, and that the rash wouldn't be confined to that one area on her face. (I am in no way a medical expert, just going on personal experience with allergies.) Could mom be using a lotion or soap that's causing the irritation? Have they changed laundry detergent for everyone in the house -- if not, mom could be passing that on via nursing contact.

I'm sure these are incredibly basic and that they've already tried them, but they're what came to mind first.

[urbancowgirl]

Poor baby! I hope they get answers soon.

[litasail]

Jan 22, 2014 22:08:37 GMT -5 CloudBee said:

Jan 22, 2014 22:07:33 GMT -5 litasail said:

Corn allergy? I have a friend whose child had something similar and it turned out to be corn, which is really difficult to control for because corn cross-contaminates everything.

Her current soy formula is corn free.  It took them a long time to find one that was corn free, in fact.

What about the other foods she eats?

[zeewifeandmama]

I have a friend who's son has a nickel allergy ( among a few others) and it was a tricky bastard to catch. It inflamed his excema like no other. I hope they figure out how to help that sweetie soon

[DarcyLongfellow]

That poor, sweet baby

The only thing I can come up with is that soy seems an odd choice since it's such a common allergen for babies. Has she tried Alimentum or Nutrimagen? Or even Neocate?

[CloudBee]

Jan 22, 2014 22:12:12 GMT -5 skib said:

Bless her sweet heart! Is there anything they can do to soothe it? At first glance, it looks like my daughter's eczema, just 20 times more severe. Have they tried hydrocortizone? I'm inclined to think there's some sort of irritant in her environment and that it's not an allergy, because it seems like that severe of an allergy would cause lips, eyes, etc. to swell up, and that the rash wouldn't be confined to that one area on her face. (I am in no way a medical expert, just going on personal experience with allergies.) Could mom be using a lotion or soap that's causing the irritation? Have they changed laundry detergent for everyone in the house -- if not, mom could be passing that on via nursing contact.

I'm sure these are incredibly basic and that they've already tried them, but they're what came to mind first.

For the longest time the mom would nurse with a barrier to prevent her daughter's face from resting on her body.

They keep it slathered with ointment much of the time for comfort.

Hydrocortisone has been used and made things worse.

Detergents have been changed, and even stopped.

[anaps28]

Cloudbee my very good friend works for Oz if you want I can pass this on. I can't promise anything but perhaps she can get this into the right persons hands. Do you want me to send a copy of your post or does the mom have her blog up yet?

[CloudBee]

Jan 22, 2014 22:14:35 GMT -5 DarcyLongfellow said:

That poor, sweet baby

The only thing I can come up with is that soy seems an odd choice since it's such a common allergen for babies. Has she tried Alimentum or Nutrimagen? Or even Neocate?

Yes to those formulas - I'm pretty sure she's gone through all of those.  This soy formula was an effort to avoid corn, which is in practically every other formula.

[karinothing]

Oh poor baby. Is she eating solids? If she is just on the formula does she have the issue? I might try focusing on stuff that is not food. Does it happen worse at night? Maybe dust mite allergy?

[CloudBee]

Jan 22, 2014 22:17:07 GMT -5 anaps28 said:

Cloudbee my very good friend works for Oz if you want I can pass this on. I can't promise anything but perhaps she can get this into the right persons hands. Do you want me to send a copy of your post or does the mom have her blog up yet?

If you could send the post for now, that would be amazing.  She's in the midst of the writeup and it's overwhelming as they have had so many diet changes, formulas, and medications to account for.

[anaps28]

Jan 22, 2014 22:18:26 GMT -5 CloudBee said:

Jan 22, 2014 22:17:07 GMT -5 anaps28 said:

Cloudbee my very good friend works for Oz if you want I can pass this on. I can't promise anything but perhaps she can get this into the right persons hands. Do you want me to send a copy of your post or does the mom have her blog up yet?

If you could send the post for now, that would be amazing.  She's in the midst of the writeup and it's overwhelming as they have had so many diet changes, formulas, and medications to account for.

Ok will send tonight!

[ladygrey]

Oh my goodness, that poor thing. I hope they can find answers soon.

[karinothing]

Also - Do you know for sure it is an allergy? I just think of other weird random disorder that make the skin super sensitive. Like obviously this is way more severe, but did you ever read Tripp's mom's blog (warning it is very sad) but he had Epidermolysis Bullosa. I don't think she has this at all but have they tried looking outside just allergy stuff and on to other skin disorders?

[CloudBee]

Jan 22, 2014 22:20:32 GMT -5 karinothing said:

Also - Do you know for sure it is an allergy? I just think of other weird random disorder that make the skin super sensitive. Like obviously this is way more severe, but did you ever read Tripp's mom's blog (warning it is very sad) but he had Epidermolysis Bullosa. I don't think she has this at all but have they tried looking outside just allergy stuff and on to other skin disorders?

They have seen multiple derms - and they all think it's an allergy.

But you make a good point that it could be a rare skin condition instead.

[vanillacourage]

This story is a little crazy but it looked to me like the areas of irritation are right where baby's tend to smear their drool everywhere.  Could it be something like this, but with it irritating the outer skin instead of the inner throat?

www.dailymail.co.uk/health/article-84211/Lisa-Stansfield-tells-allergic-saliva.html

[Deleted]

Could it be a reaction to the bottle nipples?

[CloudBee]

Jan 22, 2014 22:25:25 GMT -5 fadedscars said:

Could it be a reaction to the bottle nipples?

She's used a few different ones, and is currently using silicone.

Someone on our BMB mentioned vinyl as an allergy.  Could that be in any of the plastic pieces of the bottle?

[vanillacourage]

Jan 22, 2014 22:26:11 GMT -5 @ojo said:

Whoooa, what is her crib made of? She could have an allergy to pine.

Oh yeah - she looks like she could be in prime crib rail chewing zone. 

[gretchenindisguise]

Latex or something in the bottles they are feeding her with.

[greycat]

That poor baby! It looks like my nephew's eczema when he was a baby only way worse. He is allergic to proteins in milk, eggs and tree nuts (all except tree nuts have improved now that he is older). I'm not sure where she is located but I suggest trying a major university hospital like John Hopkins, NYU, etc. where she will have access to a team of top specialists. Please keep us posted.

ETA - on sirus /xm satellite radio there is a dermatology show on the doctor radio Chanel. It may be with emailing or calling in.