Believe it or not, this is an improvement

Fiala's skin

Sweet baby.  Sad skin.

I think we may have really had a breakthrough.  In case you didn’t see it in a comment I made on a previous post, on Monday, I couldn’t find my pure vitamin E oil (as suggested by my pastor!), so I got out an older bottle of vitamin E oil blend, whose first ingredient was soybean oil.  Almost immediately, her skin was inflamed, worse than ever!  That’s bad;  I have cried this week over the sorry state of her skin.  But, that terrible reaction appears to have been an answer to prayer, as I now have myself on a soy-free diet, and her skin does indeed seem to be improving.

My first reaction was, “I hardly eat any soy!”  I thought it would be a snap to eliminate.  But… that stuff is pervasive!!  It is in my non-dairy creamer (I’m back to regular half & half in my morning cuppa).  It’s in the protein bar I usually have on Sunday mornings.  I use soy lecithin in a homemade marinade I make about twice a week.  It’s even in my beloved Lay’s Stax!  And in my cheapo chocolate chips that we eat, and I bake with.  I buy them because they’re totally dairy-free.  But, they’re not soy-free!  Bummer.  AND,  soy oil is in the store-brand tater tots that we eat 1-2x/week.  It’s crazy, because virtually everything in my home is gluten-free and dairy-free, and it feels so good to just be able to pull something out of my pantry and know that it’s safe.  It’s been a weird adjustment to re-reading every label, checking for even minute traces of soy.  I don’t know how sensitive she is, exactly, but right now, I’m not taking any chances.  Often with food sensitivities, it’s the protein that is the problem, and the oil in the offending food isn’t nearly as big of a concern.  But, since Fiala’s bad reaction was to oil, I’m being very cautious.

Night before last, Martin came home to me nearly in tears, and VERY CRABBY because things were going very much awry with the kids.  He said after dinner, “Why don’t you go to Starbucks?” and at first, I was so ill-tempered I harumphed that I just wanted to stay on the couch and watch the baseball game.  Then, I changed my mind about two minutes later.  I said, “Call me when Fiala wakes up” and Martin replied, “No, there’s a bottle in the fridge;  I’ll feed her.”  Great!  But, we both realized the next day that the milk was pumped on a pre-soy-free day.  Ugh.   (Regarding Starbucks, they were out of the new gluten free Valencia orange cake.  Bummer.  And, at that Starbucks location, my options are always sit inside, where they keep the temp at 65° or something ridiculously chilly like that, OR, sit outside under the misters and cigarette smoke.  I chose cigarette smoke, and very much enjoyed reading Jane Eyre for about an hour and a half.)

So, it’s been very difficult to entirely eliminate soy.  But, this morning, for the first time in a very long time, the edges of the patch on her left cheek are pink (instead of red), and look like they’re truly healing.

Her skin problems have placed a near-permanent knot in the pit of my stomach, from seeing her in pain (when she scratches and draws blood) and discomfort (from itching)…  she hasn’t been sleeping well (meaning, neither have I, and not sleeping well at nighttime lends to her daytime crabbiness)…  I have felt very powerless to help with her skin, because nothing I have tried, both on my own, and as suggested by doctors, and as suggested by other concerned souls, has really worked.  A few things have slightly helped, or appear to help short-term, but mostly, it’s simply been a search for products or anything I can do to not make her skin worse, and it has been, by and large, a losing effort.

I’m also weary of fielding questions from others when we go out.  Maybe that’s dumb on my part, but we get so many comments from others, and I’m just tired of answering questions, and seeing multitudes more look at Fiala in concern or even fear like, “Can I catch that?”  I have seriously seen people recoil when I kiss her face.  I’m tired of that.

Obviously, my biggest concern is Fiala’s health.  I’m starting to be very concerned about scarring.  However, I find myself going out — even on simple errands, or to the library — less frequently, just because I don’t want to deal with others’ reactions to her skin.

I really, really, really hope that eliminating soy will solve her skin problems, or at least improve her skin greatly.

We do see a doctor on July 10, but that doesn’t mean that I’m just going to sit back, watch Fiala’s skin fester, and wait for the appointment.  😦  And, anyways, Fiala’s pediatrician has been of such little help, it’s hard to hold out hope that the pediatric dermatologist is going to have a miracle cure that the pediatrician didn’t know about.

So.  That probably sounds whiny, but there ya go.  Keepin’ it real.

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on June 26, 2009, in Allergies, Babies, Books I'm Reading, Medical Stuff, Sad Things, The Dear Hubby, The Kids, Whining. Bookmark the permalink. 25 Comments.

  1. glutenfree4goofs

    Oh that dear, dear girl! 😦 I’m going to try soy with Judah I’m still having trouble and maybe myself too. Do people “develop” allergies as they age? I know about the celiac but I’ve never had any other sensitivities that I noticed until lately it seems everything I eat gives me a stomach ache and I’m off gluten and dairy now (which never bothered me before)! Makes me feel like a nut! Wellll, that’s besides the point. I do hope soy is the ticket. Praying for your baby right now!

    • My dad had a horrible mold reaction all of a sudden in his early 40’s which put him in the hospital. He’d never shown more than a sniffly nose before that. Now he has really bad migraine type allergies that knock him out.

      I did start having allergy problems until I was a teen and just now in my 30s have shown definite sensitivity to gluten & dairy.

      So yes, I think that you can grow into allergies, just like some kids can grow out of them.

      • I do find myself wondering if these “grown into” allergies and intolerances aren’t the result of exposure to something that has weakened our bodies — like chemicals or something. IDK. But, it does seem suspicious.

  2. I am SO SO happy it seems to be working!

    having had a sick baby I know what you mean about the ache in your heart that just wants to heal your kid. and the turmoil you feel when everything you try doesn’t work. I felt that way about Eva (kittycat) for so long.

    I wonder if being off of soy would help me finish healing my gut? it’s like I’m missing something. I’m so much better but I’m still having unhappy stomach and bloating issues I can’t seem to resolve. and it’s very uncomfortable.

    anyhow, my prayers that this works for her!

    • I feel like I’m still missing something, too, Laura. I’m half-afraid to find out what it is, like it’ll end up being rice or corn, or some other staple of a gluten-free diet! 😦 I do need to find a good allergist or g.i. doc for myself… so hard to find doctors whom I can trust.

  3. We have soy issues, too, that can show up FOUR days after consumption. See pics here: http://notnewtoautism.blogspot.com/2009/04/delayed-food-allergy-testing-before-and.html

  4. PS: Have you tried a calendula cream or ointment on the rash? We also use ointment in a tin by Badger Cream that I found in the gift shop at a Cracker Barrel restaurant and later found at Whole Foods.

    • Yes, I do! The homemade salve I use has calendula in it. I soaked some calendula and chamomile blooms in some sunflower and olive oils for about six months, then combined the oil with organic beeswax to make an ointment/salve. It’s the only topical thing that works even a tiny bit.

  5. Karen Joy, I tried to publish your comments to my blog and I somehow *rejected* them (not sure what went wrong). To answer your question (the one I didn’t mean to reject! I’m sorry), my daughter’s delayed food allergies are soy, sunflower, pineapple + gluten and casein, and that testing from US Biotek (described in the post over on my blog) revealed some immediate allergies to several nuts. (We were not doing nuts, anyway.)

    Sunflower is almost as difficult to avoid as soy. And if you take digestive enzymes, check them for bromelain (pineapple).

    You’ve probably already tried putting breast milk directly on the rash. You might even consider opening a capsule of probiotics and mix it w/ breast milk to dab on her face. Disclaimer: I am NOT a doctor and this is NOT medical advice. I’m just a mom!

    Hope this helps.

    Penny

    • No disclaimers needed, Penny! I’m open to all suggestions. I have put breastmilk on her face… Never thought of probiotics! I have some powdered capsules in the fridge right now. I will try that!

  6. An hour and a half with Jane Eyre and a coffee……

    That sounds like a prelude to heaven. (I’m a little down and weary tonight myself. So, that sounds perfect!)

  7. I will pray for dear, sweet Fiala. My good friend did elimination diet with her two oldest boys when they were babys because of awful eczema (accompanied by almost constant fussiness). They turned out to be allergic to pretty much everything but vegetables, fruit, some fish, and some grain that she got at the health food store. Truly. It took one year for one of them, and two for the other, but after sticking to that strict diet they were able to gradually add in other foods. They are teens now, but have been eating completely normally since before I met them at ages 6 and 4. The diet thing is so hard, but often it is not a life-long thing if you keep to it strictly for a couple of years.

    My son (now 10), on the other had eczema from an allergy to Japanese dust mites (it completly cleared up whenever we were in the US), but even he has mostly grown out of that, and only has to deal with a bit of dry itchy skin in winter. I still remember all the stress I felt before we knew what the problem was with him, though, and he didn’t even have it on his face much. I will pray for healing for baby, and wisdom for Momma – that God will again show you anything else she is allergic to!

    • I think I may just have to suck it up and do a full-on elimination diet. My husband, oddly enough, is not really supportive of me doing a super-restrictive diet. But, more and more, I have heard from moms IRL and online, who were only able to ID serious allergies via a hyper-restrictive elimination diet. We’ll see…

  8. Karen,

    My 5th has had a time with multiple food intolerances. Her main symptoms were excessive spitting/vomiting, eczema, mucous/blood in ruuny stools. The very short, short version is that I ended up on a total elimination diet of lamb, a few veggies, and pears. After nearly starving, I switched to rotation diet where I rotated my grains and proteins. At 11 months, we are now trialing soy back in…she did fine with the soy oil and lecithin, but this week we are trying soy foods (through my breastmilk, only). No big changes, but she is getting those allergic shiners under her eyes…only on day 5 out of 14. We’ll see…Probably the most frustrating thing was eliminating rice…yes, a killer when you already eat gluten free. Her first allergist said “No way! No one is allergic to rice!” But the specialists at Texas Children’s in both allergy and GI told me that rice intolerance is common in these ultrasensitive kiddos. Anyway, I understand how frustrating this all is. After the diet I have been on, my old GF diet will seem like a breeze.

    • Jill ~ Where did you get the info for your elim diet? I am the world’s supreme Googler, but I couldn’t find a good prescription like, “Here’s what you start with, then work in this after two weeks,” etc. Even my chiropractor/nutritionist/almost-certified-as-a-naturopath didn’t have really good info on a elimination diet. I have definitely heard that lamb is the best-tolerated, “pure” meat, and that virtually no one is allergic to pear (plus, I think it’s the only non-acidic fruit)… but where do you go from there?

      I am very happy that your baby is healing. Your situation sounds like a friend’s… she ended up putting her son on a g-tube, for very similar symptoms to your baby’s, and I just can’t help but think that there must be SOMETHING different she (and I) can do!

  9. I hope she gets feeling better!! Soy is near impossible to eliminate. I know it stresses people out to no end. I reduce mine, as in I don’t eat tofu or soy nuts, but I’ve never had to totally eliminate. Hopefully this truly was a helpful mistake and will lead you down the path to recovery!

  10. Thanks for keepin it real. I read this on a day that I was feeling I was the only mom who struggled with…well, everything! Blessings to you and your dear one! It hurts to be a momma sometimes doesn’t it!

    • There’s such a balance there with the whole “keepin’ it real” thing… I had a conversation with another mom recently who was really struggling, and she was looking to me for help, and I tried to defer and laugh off her… looking up to me… I felt uncomfortable with her relying on my “expertise.” But, the result of that was that her hopes were totally dashed and she was more discouraged after we talked, like, “If you can’t help me, who can??? Maybe I should pray for you!” And, the words of a former Bible study teacher came back to me, something to the effect of, we’re all older and more experienced than someone, and not to let the enemy keep you squashed down by making you feel not good enough, thereby rendering you useless as a minister of the truth and the Gospel. BUT, OTOH, I never, ever, ever, ever want to feel or project like I’ve got it all together as a wife and mother. That’s total pride. So, I’m always searching for the balance, and never feel like I’ve quite achieved it.

      (Sorry, that was probably more of a reply than you bargained for!!!)

  11. ooooh, I feel your pain. When my oldest was a baby, he chewed his fingers constantly, and I swear he was allergic to his own drool, because his face and fingers were red and scaly from about age 6 months until he was 15 months. He also reacted to any acidic fruits–mandarin oranges, pineapple, the juice just flared his skin bright red.

    Poor baby. She’s beautiful! I hope her skin feels better soon.

  12. I am not sure if you saw pictures of my niece before her surgeries. Someone actually asked my SIL if she was going to keep her face covered when they were out and maybe not take her out at all. But now she sorta understands that because she wants to shield her from the ugliness of other people.

    I would probably would be one that asks what happened because babies in pain make me so sad and I know that my kids would ask too. They hate to see babies in pain. Now I will try to be more sensitive.

    I am glad that her skin seems to be improving. I did just remember that my friend’s boy had this horrible rash on his body and he was allergic to nickel, which is apparently in snaps. So all those onsies, etc. were a no-go for them. Now (at almost 15) he can wear jeans (because of zippers, snaps) if he keeps his shirt tucked in. I assume she is probably not allergic to that, but sometimes it can be so strange.

    I am glad you time to yourself. What a nice little reprieve!

    • Christy ~ I’m glad that you and your children would ask. I like it — in general — when people ask about Fiala’s skin with genuine concern and sweetness. It’s just, though, that I get it so much, that I grow weary of even the kind comments. Still, though, I prefer the concerned, inquisitive comments to the jolted, wordless, “Oh, my God!” kind of expressions from others. … Not counting church, where there is LOTS of ongoing concern, I have counted a bit, and it averages one comment from strangers approximately every 30 minutes. So, if we go out on errands, which can easily run into 4 or 5 hours, depending on how many places we go, I will have fielded the same questions, and made the same explanation eight or 10 times, and that’s each time we go out. Know what I mean? I certainly don’t fault others for their concern… I think, also, that I feel partly guilty, like I should have figured this out by now, and obviously, it’s something she’s receiving in my breastmilk. So, though it’s not people’s intention, I feel a tad indicted with every question.

      BTW, I have seen nickel allergy — a friend’s son has that. But, it tends to be in the area where there’s nickel. (Her son had an awful rash centered on his stomach.) It definitely could be something in the environment, rather than food… I guess I tend to think that it’s mostly food, though.

  13. glutenfree4goofs

    Just a quick note, double check that your probiotics are milk free if you are still thinking that is a cuprit. Davie can only digest the milk protein in goat milk with probiotics but I missed the fine print on one and she got worse for a while before I found the little spot where it said “traces of milk”.
    My son Ethan almost always has some sort of huge gash or road rash on his face, I totally know about the not wanting to get asked thing! People I’m sure think I’ve done something TO him and they get the saucer eyes…. Sometimes I want to choke them and say “don’t you LIVE in the REAL WORLD!?” I wouldn’t do that of course it is just a knee jerk! 🙂

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