Julia's Guardian Angel Fund

Wednesday, October 6, 2010

Now what?

I'm proud to say we have made it 8 weeks gluten free with very few slip ups (only in the first two weeks)
Despite that, my three year old's eczema is worse than ever.  It's now on his neck, arms,  face, stomach and sides.  He'd never had it anywhere but his legs (and diaper area - ouch!). It's still there and worse than ever.

He's no longer getting any dairy, eggs or wheat.  Now, he eats MOSTLY rice (which I'm allergic to), gar-fava bean flour, coconut milk, corn (tortillas), soy based cheeses, Earth Balance Buttery Spread (thank, realmom!) instead of the obvious alternatives.   One thing I've noticed is he has started to only eat a few things.  If I bake anything, he won't eat it.  I tried to make cinnamon rolls for him - nope.  I have baked GF/CF/EF brownies with a Bob's Red Mill mix and he wouldn't eat those either.   GF Biscuits?  Nope.  He will eat pancakes made with the new Gluten-free Bisquick, but not the Bob's Red Mill GF Pancake mix (any body want what's left?)  I've also made a wide variety of things like muffins, coffee cakes, etc and he's turned them all down cold.  He likes it when I make oven baked chicken with a Gluten Free Bisquick as a coating.  The last 8 weeks I have tried to make his food as much like ours as possible so that he doesn't feel denied.  I don't think he does.  Now he's being selective either because of picky-ness or because something is not agreeing with him.  He's not terribly verbal, so it's hard to figure out.  It's very frustrating when he REALLY needs to eat to gain weight.

I'm more frustrated about the eczema, though.  While he's not lying in a pile on the couch saying he's tired anymore, he's scratching all the time now.  He can't sleep.  We're down to one bath a week with cool water and moisturizer two times a day.  I can't seem to pin point what the culprit might be that is causing the eczema.  So, next trip to the doctor we'll have to do yet another blood draw to see if he's allergic to rice, coconut, sunflower seeds or perhaps some fruits?? I don't know.  He already takes Zyrtec, which is a histamine blocker for his allergies.  I wonder what his eczema would look like if we took him off that!  I can't see putting a kid that is already short and small on steroids.  For now, we're relying on Aquaphor and tricimnalone for the eczema.

I wish we had a normal here.  He also hasn't gained any weight or grown taller.  It is hard enough to try to get him to gain weight on the short list of foods he's allowed to have.  He comes down in the morning, literally shaking because he's so hungry. Then, he turns down the food he asks for and requests something else.  It's hard to know when to give in and when to give up.

One more month and we'll have had our three month run of Gluten Free eating.  I'm not sure what will happen when we switch back.  I'm a little scared - scared that what I am doing now IS the new normal.  All prayers are gratefully accepted.

5 comments:

  1. Prayers are most certainly heading your way. We were once told by a doctor that the 2 hardest things for a parent are
    1) watching your child suffer and
    2) having no idea what is wrong

    You seem pretty savy with all this so please don't take offense, but just in case you are a tad bit stressed and lacking sleep...

    1) I didn't see it on your list but could it be tomatoes? It's a common eczema culprit.

    2) We have a fabulous Catholic chiropractor in the area that can do non invasive allergy testing. It's quick and easy and surprisingly accurate (my husband no longer has repeated sinus infections or eczema after our chiropractor diagnosed him with dairy and tomato allergies)

    3) Have you done any testing with Genova Diagnostics for PERSONAL REACTIVE FOODS? We did that when we had a medical conundrum a couple years ago. She tested most highly allergic to grapefruit - which is also what our chiropractor discovered. The paper I have in front of me lists items she is allergic to with a +1, +2, or +3 next to it. The form also says (Delayed food allergies are recognized as the most commonly undiagnosed contributing factor to undiagnosed chronic unsolved symptoms. Genova Diagnostics IgG Antibody Assessment uncovers delayed food allergies reliably through strict quality control and supervision.......) We did it through someplace associated with Children's Hospital. I cannot remember off the top of my head what it's called by I do still have paperwork I can dig out easily if you are interested.

    4) Have you considered things like laundry detergent or dryer sheets? Both my dd and myself need to avoid perfumes and dyes in both. And, even the perfume free dye free fabric sheets causes hives here.

    Sorry this is so long. I would not be offended if you deleted this.

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  2. No! Thank you!!! I'm asking for help. I would like to get the chiropractor's name. Can you email it to me?

    We have only done IgA, IgE and IgG testing for:
    eggs, dairy, soy, wheat, oats, nuts, fish, shellfish, peanuts

    I'm also going to look into NAET treatment. Another friend with multiple food allergies in our home school co-op has had it done and it's supposed to cure all your allergies.

    I use All-Free & Clear and vinegar for our laundry. Dryer sheets alone put more DUST on your clothes than anything and he's always been sensitive, so I've never tried anything with scent detergent wise and have never used fabric sheets.

    Tomatoes could be a problem. He has it in some form every day either through ketchup (this kid eats ketchup on his ketchup) or spaghetti sauce. One of the foods he is fixated on is rice noodles with spaghetti sauce. He dips his carrots in ketchup. So, that is totally a possibility.

    I'll see if my doctor can do the Genova testing. Otherwise, if you have a referral, I will take it.

    I am restless having to watch him suffer. This kid has had a rough go of it from day 1. One of the things I'm struggling with is his need to be held because he doesn't feel good, or is tired from not being able to sleep due to itching and trying to keep the one year old happy. While it is unfortunate my husband in unemployed right now, I don't know how I would do school trying to hold him and keep her happy, too. He's miserable. She's miserable. Not a happy place to be for a mommy.

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  3. Restless?? I bet!

    And even with help, you must be distracted anyway with worry and just the practical considerations, too.

    It probably is food, since it's so systemic. But, it makes sense to check for things like soap and shampoo. Detergents give me and one of my kids everything from canker sores to rashes, eczema (more transient than your little guy's), and skin sores.

    Prayers, for him and you.

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  4. Thanks, Hannah. I use Dove Unscented Sensitive Skin Soap-free cleanser for all the kids since I have other kids that are sensitive to scented soaps. It might be a culprit (anything could be at this point). Strangely enough, his scalp has no eczema.

    We caught a possible source of his current eczema outbreak. I just found out tonight my husband picked a different spaghetti sauce by accident. We've been using it for the last 2 weeks. He didn't see the type we normally purchase (Prego-2pk) and this one had (Ragu-3pk) Romano cheese in it. My 12 year old, who reads anything within sight with words on it, saw the jar while today and said, "Hey mom. This contains milk." So, the recent flare up of eczema might be explained by the new spaghetti sauce. It got really bad the last two weeks and that would definitely explain it. I can't believe I didn't read the label. I didn't even think about it. I didn't spell out PREGO, when I made the list. So, when spaghetti sauce came in the house, I just went on autopilot, thinking it was the same. I can't do that anymore...

    Thank you for the prayers.

    We did some fun experimenting here with AK via a surrogate. The three year old tested positive for eggs, dairy and wheat, just like the regular allergy tests showed. Weird, yet very interesting science. I need to read more about it.

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  5. Tina would get eczema flare ups bad when she was a little girl from anything with a tomato base to it. I would definitely look at the spaghetti sauce, and the ketchup as being culprits.

    I remember when the 5.5 year old went through all the allergy stuff. It was horrible, and for a long time we had to make sure that he didn't get anything with milk in it. I was shocked at how much contained milk. Or peanuts (or manufactured at the same place with peanuts). The good news, Cathie, is that he could end up growing out of all of this. Tina no longer has flare ups from tomato based stuff, and hasn't in years. Charlie isn't allergic to anything that he was allergic to when he was between the ages of 6 months to 4 years old. The doctor said that it can cycle through your body. So, let's hope that is the case with you as well.

    Also, the soap thing. I recently found a company in Minnesota that makes their soap with all natural ingredients. Most of it is scented, but there are some unscented ones too. http://www.applevalleynaturalsoap.com/default.htm

    ReplyDelete