Welcome to my blog!

This blog is a journal of our struggles with food allergies and eosinophilic gastrointestinal diseases (EGIDs). ("DD" stands for "dear daughter", so whenever you see it in the blog it is referring to my daughter and our personal experience.) My hope is for this blog to be a source of information and support to others who might be trying to investigate, diagnose, treat, or live with, food allergies and EGIDs. Feel free to leave comments with suggestions or requests of what you would like to see on this blog. This is a work in progress. :)

Month 7

April 2008

The elimination diet is not producing the results that I expected; the eczema continues to get worse. It's now crusty and oozing most of the time. DD seems to be reacting to the squash that I'm eating, even though I've been eating zucchini (same food family), and it's supposed to be one of the least allergenic vegetables... But I continue the diet, minus the yellow squash (I continue zucchini, as she seems fine with it.)

I start looking into leaky gut some more, and reading up on how we can help the healing process along. I'm still hopeful that with healing, DD can overcome these allergies. I'm also looking into alternative allergy testing, since the RAST done by the allergist showed nothing, and I KNOW without a doubt that DD is reacting to very specific foods in my diet. Some moms on the discussion board that frequent have mentioned the ELISA test, so I think we will try that out.

At some point this month, I ask the pediatrician to give us a referral to a pediatric gastroenterologist, since she has some blood in her poo. I want to make sure that everything is ok, and figure the GI doc can help us figure out what is going on in her gut and help us fix it. We have a Children's Hospital here in Seattle, and they have a GI department, so I thought that would be the best place to go. Our pediatrician agreed and sent the referral.

Here is what happened (I am just copying and pasting from a post I made on a discussion board):

If you've missed all my previous posts, some background: DD is showing allergies to milk, soy, eggs, beef, nuts, peas, and maybe fish. But with 2+ months of an ED, I finally have started seeing some improvement. Last week she was almost completely healed up- no spitting up, no eczema, no mucous/bloody poos, no raw/rashy butt, no gas, no screaming, and sleeping much better. Then I ate peas last week and she had a HUGE reaction. Each time she's had a reaction, her symptoms get progressively worse and this time she is showing a lot more blood in her poo. So I decided to get a referral to a pediatric gastroenterologist to make sure that everything is ok.

I just got the call back, and they are refusing to see DD unless I stop breastfeeding. What kind of medical professional would actually think this is a good idea? The nurse I spoke to said that DD is reacting to my breastmilk, and that I just need to stop BFing- even though I told her that I can control the symptoms through my diet, but I'm still trying to pinpoint all allergens so I wanted her to be seen just to be on the safe side.

After I said that formula absolutely wasn't an option, she said, "We all just want what's best for your daughter, and breastfeeding is what is making her sick so you need to look at other options. You don't want her to continue to bleed out, do you? I know that BFing is a special, bonding time for you, but there are other ways to have special time with her."

WTF?!?!? I agree that there is a component of BFing that is about the bonding, but what about all the lifelong health benefits? Does she think I'm just doing this for fun? That I've been exclusively BFing DD since birth- through the cracked and bleeding nipples, the clogged ducts, the mastitis- just for kicks?

I am just so completely broken down at this point... I've had a pediatrician look at me like I am making this whole thing up, an allergist who didn't want to hear anything except test results, and now a GI doctor telling me that I am continuing to harm my DD so I should just give up on BFing. And DD's insurance doesn't cover a naturopathic doctor, so that isn't an option.

BTW- this decision (to refuse our referral) came from Dr. Christie, head of the GI department at Children's Hospital in Seattle.

I can't believe how utterly misinformed and uneducated the medical field is in this area.

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