Rollercoaster skin issues :(

I have been really hoping that Fiala’s severe eczema sores could be eradicated by eliminating one substance (likely food) from her diet. Then, after I figured out that both soy and milk were causing her problems, I thought, “That’s OK! Two things! Very manageable.”

I had not been eating eggs, as I took them out of my diet (along with dairy and tree nuts, plus, I’m already gluten-free, due to celiac disease, and peanut-free — due to my 7yo son’s anaphylaxis we can’t have ’em in the house) when we were completely in the dark as to what would help her. I started eating eggs again, and there was no change to her skin. Great!

Then, nuts. Darn. Nuts seem to be a problem. Her skin flared up badly for a few days after me eating both almonds and pecans. I stopped, and after a few days, her skin settled back down. So, I’m gluten-free, dairy-free, soy-free, and nut-free, along with her.

Then, yesterday morning, her skin broke out TERRIBLY. I had given her banana chunks and Rice Chex for breakfast. I don’t think rice causes any problems for her… but now, I’m thinking, “Is it banana? Or, is it the pork I had with dinner last night???” I don’t know. 😦 When she seems to be having reactions with both what I’m eating, and what she’s eating… and with the knowledge that some foods cause a quick reaction, and some bad reactions may not show up for hours, or even days… it all just seems overwhelming, like will we ever find out what’s wrong with her???

All I can say is that, when we first ID’ed soy and milk as major problems, we thought we might be able to cancel tomorrow’s appointment with the pediatric dermatologist (who is going to do micro injections to test for allergens). Now, I’m glad we’re going, because I feel at a near-total loss again… I hate that powerless feeling, looking at her oozing and bleeding cheeks, and being unsure as to what caused it. 😥

The only good news — if there is any here — is that I think my husband might be more supportive of me doing a total elimination diet in order to pinpoint the problems. Previously, he thought that was just too extreme. I certainly don’t relish the idea of living on lamb and pears for weeks on end — I normally don’t even eat lamb; out of conscientious objection I don’t eat any baby animals, though I guess store-bought lamb isn’t actually lamb, but mutton (to which I regularly reply, “Then why don’t they call it mutton?”). But, I’m ready to try just about anything, even if it’s to my total inconvenience, and my family’s inconvenience, as well.

~sigh~

In addition, I find myself feeling a bit guilty. I don’t know quite how to explain it. A man at church on Sunday, after asking what was wrong with Fiala’s skin, said something like, “Man! There’s something wrong with ALL of your kids!” To which I laughingly replied, “Not Ethan! Ethan’s normal.” But I really didn’t feel laugh-y. I feel like with my husband’s severe childhood asthma, and my childhood eczema and environmental allergies, plus my celiac disease… And my husband’s alopecia areata… Not that alopecia is genetic, but we both have fairly serious autoimmune problems, both in ourselves, and in our family history. It’s like we created the perfect storm of bad genes to pass down to our kids. 😦

I’ll let y’all know how tomorrow’s appointment goes.

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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 July 9, 2009, in Allergies, Babies, Medical Stuff, Sad Things, The Dear Hubby, The Kids. Bookmark the permalink. 24 Comments.

  1. Hi Karen,
    Just curious, with all of these issues and her being older, why do you continue to breast feed? Isn’t she old enough to start going on semi solids and back up bottle feeding? You may have explained it in a previous post but I have never read your stand on breast feeding. If you took yourself out of the picture completely, the bottom line of healing her would be much more quickly obtainable would it not? Just curious, not judgemental or trying to tell you what to do. Others may be curious as well but may not feel comfortable asking you. Since I am ignorant and old, I don’t understand breast feeding and the latest research to undertand why it isn’t an option to take off the table.

    • Breastfeeding definitely is the best, God-designed source of nutrients for a baby. However, since proteins (and other stuff) pass into breastmilk, a mother with a nursing baby who has allergies or intolerances, will — if she’s wise and well-supported and has done her homework — continue to breastfeed, but eliminate the problematic ingredients.

      98% (just my own estimation!) of baby formulas (formulae?) are soy- or milk-based, which, for us, are automatically out. Those that aren’t, like Alimentum, Nutrimigen, or Neocate, are RIDICULOUSLY expensive, anywhere from $26-40 a can, which will last less than a week (and they STILL contain soy products, just not as much). http://www.kidsource.com/maternal.conn/cost.feeding.html (This link doesn’t even include Neocate, which is even more expensive than the most-expensive formula included.)

      Not to mention that all baby formulas are sweetened with corn syrup solids. Ack. There is no such thing as an overweight breastfed baby, but plenty of unhealthily fat babies who have been fed on formula. It has also been documented that formula-fed babies have a higher rate of childhood and adulthood obesity.

      A friend of mine had a similar food-intolerance problem with her son, and doctors advised that she stop breastfeeding and start him on one of the “hypoallergenic” formulas. She did, and he couldn’t tolerate those either, and had to have a g-tube inserted. Ack again. Major surgery? Or eliminate a few foods? I’ll eliminate the foods, thankyouverymuch.

      And, I don’t think it would be any easier to ascertain what she’s allergic to/intolerant of, if she weren’t breastfeeding. It would still be a hit-or-miss scenario, and she would be getting incomplete nutrition. Fiala, at 8 months, is eating some solids, but is too young to NOT have some sort of liquid sustenance. No matter how scientifically advanced any formula is, I refuse to believe that any formula is better than breastmilk. Scientists are still studying breastmilk, and have not yet catalogued all of its components. It’s that complex! Plus, it is a known fact that a mother’s body will alter her breastmilk according to the temperature outside, the time of day, how much liquid a baby needs, and so on. Breastmilk at 9 a.m. is substantially different from breastmilk at 10 p.m. Amazing.

      PLUS… breastfeeding is comfort for a baby, and peace to the mother — compliments of physical closeness and the miracle of oxytocin — and I’m loathe to give it up. Many times, just the act of breastfeeding is what both Fiala and I need. Not to mention, it’s entirely free and completely portable. 😀

      Ethan breastfed until 13 months, at which point I weaned him. Grant self-weaned at 12 months. Wesley (my first child with serious food issues, which I handled very ignorantly and clumsily — oh! if I could do that over again…) self-weaned at 10 months, and I switched to goat’s milk (which he couldn’t tolerate), then rice milk. When he was dx’ed at 13 months with celiac disease, that made our lives a lot simpler and easier to navigate. I weaned Audrey at 21 months. I hope to breastfeed Fiala at least 18 months. Here’s hopin’! 😉

      • An interesting note, I was given Nutrimigen as an infant (after to much time in Cincinnati Children’s with failure to thrive) and my doctor has told me that they have seen quite a number of children who were put on Nutrimigen be diagnosed with Celiac’s as adults. He told me that they have not come to a consensus on what the exact link is however.

        • That is really interesting! Maybe it’s because celiac disease is a protein intolerance-related disease, and Nutrimigen works for most babies who have various sorts of protein intolerances! (My son who is now 7yo was dx’ed failure to thrive, as well, at 13 months. No time in the hospital, though, thank God.)

  2. glutenfree4goofs

    Ah I have gotten that “isn’t anybody normal” response from my husband. He is usally pretty supportive (as long as I don’t get to extreme) but I think he feels helpless and frustrated. My oldest is eliminating milk for the time being and my husband said “NO you CANT be alergic to milk TOO!” For Caleb it really isn’t TOO (just celiac and possible milk) but my 2yo seems to have a lot to deal with. I don’t know it does seem unfair or wierd or maybe like I’m stabbing in the dark sometimes. Other times I feel as if I’m just making things up so I’ve re-tested and then whoa, he reacts. My husbands personality is one that processes through talking/writing so it helps him when I put it all on the calendar then I can say… see he ate nuts and 4hrs later a reaction. I don’t know you probably already do this. Let me say you help me keep digging and I appreciate your “support”! I’ll keep you in my prayers about the appt.

    p.s. thanks for “introducing me” to Sue in Japan, we’ve been having some great email conversations!

    • Yes, Sue is so lovely I sometimes don’t quite feel worthy to read her blog! 😀 Beautiful kids, and a very interesting life… I really like Sue!

      I don’t keep a food diary. I should start one. For a long time, she just had major problems no matter what (so it seemed!) I ate. Now that she has days that are better than others — like today is better than yesterday, but not as great as, say, Monday last week — I really need to be more careful about documenting. I’m sort of waiting to see the outcome of tomorrow’s appointment. If we can pinpoint some issues with the micro injections, I’ll start with those. If I eliminate a bunch of stuff based on those results and she’s STILL having problems, I’ll then do a serious elimination/exclusion diet, which, of course, you have to hyper-document.

  3. Karen,
    I had no idea about the formulas. The cost and content!!!!!!!! Thank you for the quick reply, it makes sense to me now.

  4. Oh, geez. It’s never easy, is it? I was very surprised when I tested positive for banana allergies. And because of that I am advised to avoid latex (comes from the same plant family as bananas–tropical plants). I was amazed at how my digestive issues got so much better when I eliminated my allergic foods (apples, green beans, bananas).

    I hope you get some answers.

    • What sort of allergy testing did you have done, Karen? Just curious. Hm. Cross-reactivity — that’s always so tricky!! My mom is allergic to latex; I think I’ll tell her about that cross-reactivity to bananas.

      • Yep, latex comes from the rubber tree, which is related to the banana tree. Kiwis, I think, are related to bananas as well.

        It’s not that a banana allergy=latex allergy, but because a person is allergic to one item in the family of plants, they can develop an allergy to latex. Basically, my allergist told me “better safe than sorry, but don’t stress about it”, meaning, let all medical personnel know not to use latex if you’re in the hospital, or having dental work, but using a Band-Aid here and there that has latex, or handling a balloon once in a while, isn’t an issue. Again, it’s repeated exposure that can create an allergy.

        I don’t react to latex, but I do tell my dentist and doctors to use non-latex gloves just to reduce exposure and therefore risk of developing said allergy.

  5. Karen, I had the skin prick testing done. I had had an anaphylactic episode (scary) and went in for a full allergy workup. Although, some people will not test positive on a skin prick, especially if they are NOT ingesting the potential allergens regularly, so a blood workup may be better. I have had the “under skin” injections to re-test my environmental allergies, as well. Those did a better job pinpointing the allergy.

  6. likely if you stopped BFing thins would get worse as there are WAY too many additives and preservative in it and it’s nearly impossible to know what they are. when eva was sick i finally threw in the towel on nursing as your first commenter suggested… with in 2 week she had becone 10 times worse! my milk never dod recover and she suffered til we found raw milk when she was 17 months old. i am with you – keep bfing if you can.

    not to sound stupid – but are you putting anything on her skin or clothing soaps that could be aggrivating her rash?

    lastly, some one said that same remark to me about our whole family being sick – it really really stung and made my heart ache. i felt so judged and hurt.but i know i’m not making it up so what can i say?

    • Not stupid! I started making my own laundry detergent in April, just to be safe. (1/3 Kirk’s Castile soap, 1/3 borax, and 1/3 washing soda/sodium carbonate) It did help, a wee bit. And… I abandoned petroleum-based moisturizers a number of months ago, since at BEST they didn’t help, but more often, they aggravated/stung. So, I use aloe, lanolin, and a homemade salve of beeswax and olive oil.

      I’m sorry your heart aches over what that person said!!!! 😥 You are doing what’s best for your children. A hundred years ago, children with serious health problems would get “committed” somewhere, or just left to languish and die. Bless God that we can now much more often find the source and bring our kids into health in spite of what’s going on in the world and our environment!! You’re doing the right thing, Laura. Be encouraged.

      Funny — I don’t care what OTHER people say (mostly) because they just haven’t walked our path, and even I had a hard time believing a change in diet could make a difference until we found out about Wesley’s celiac disease, and his health turned around almost overnight — from failure to thrive to positively healthy!! So, OOH, I don’t blame them for misunderstanding or judging… but what does bother me is when my husband doesn’t quite believe or support something I’m trying to do for better health for me or my kids… Although I must say that even when he’s slow to get on board, he has almost always come around… 🙂

  7. Karen- keep up the breast milk… it’s likely she will have a far worse reaction from infant formulas because of all the crap in them.

    Just a thought… it could be preservative related. I don’t know how many items you have in your diets with chemical preservatives, but that is the one issue I have with Rice Chex (though we do still buy them sometimes). My 7yo gets a good reaction to any artificial preservatives. Banana’s are usually pretty benign.

    Another thought… what kind of cleaners do you use on her high chair tray/dishes/etc… that she eats food straight off of? Could be a reaction there as well.

    If you do decide to start trying her on some “milk” other than Mama’s… you might give a go with Raw Goats Milk. Our friends have have excellent luck with their 3 mo foster baby after switching him from formula to Raw Goats Milk. She buys it in bulk, freezes and gently defrosts as needed.

    That remark about having everyone in your family sick is just plain rude. I hate it when people express their ignorance that way… sometimes I feel like that’s my husbands opinion about the rest of us… me and his non-genetic children. Poo-poo on that! Try to just let it roll off… some of us just get the issues… and others, well they are the lucky ones until they have a sudden heart attach at 50 which takes everyone by surprise because they’ve always been “so healthy”.

    • Jamie ~ I will keep an eye out for preservatives… I have considered a Feingold (or similar) diet, and will if what the allergist said (more on that later) doesn’t have a positive effect.

      Cleaners — on the high chair — usually just water, sometimes with (natural) dish soap.

      I will likely have her drink the rice milk I make, once she reaches one year. I’ll keep nursing her, but for her non-nursing liquid, rice milk works well. And, since I make it, it’s sweetened w/ honey and supplemented with brown rice protein, so it’s hyper-healthy and easy to digest.

  8. Your comment about “the comment” of all the kids having something wrong. 1. I’m sorry people say things like that without thinking. 2. Have you done any research into homeopathy? Obviously you have to keep working with your food options and allergens. In homeopathy there’s a general concept that the health issues we have now come from generations of ailments (mild & chronic) in our bloodlines. It goes beyond just the genetics disorders, but basic symptomology. I guess I mention that because it sort of sounded like you feel you made your kids this way. Perhaps thinking of it as a culmination over time and the choices that generations made about their health (or situations they had no choice over) might help alleviate some guilt. Also, combining some homeopathy with the allergen elimination might help reduce some of her sensitivity and get her back on track faster.

    • Ah, homeopathy. Well, when we were paying $10 co-pays for a regular doctor, and would have to pay out of pocket for a homeopath, it just seemed like way too much money. But, now that we’re paying $50 copay for specialists, and $25 for our primary care doc, homeopaths just don’t seem that pricey!!!!! I might go that route. However, a homeopath that’s not too far from me, well… a lot of my friends go to her, but I don’t agree with a lot of her recommendations (Marshall Protocol for just about everyone, gluten-free diet for just about everyone), plus she’s hyper-dependent on endocrine manipulation with various hormones… and I just don’t buy into all of that, so it’s hard for me to want to go to her. It’s really hard, IME, to find a good homeopath that is well-educated AND in line with my own spiritual and health beliefs and practices AND who isn’t cost-prohibitive AND doesn’t have an office 40 miles from my house, etc. 😦

  9. Hi Karen — I’m a new reader on your blog. Found you when someone clicked a link from one of my posts to yours and I though “hey, who’s she? that’s a great blog tagline!” 🙂 You posted some great information on formula vs. breastfeeding. I just read a post on Radical Womanhood, Carolyn McCully’s blog, last night where she talks about organic baby formula and some upsetting regulative decisions made by the USDA regarding what is and is not permissible. If you’re interested, the article is at http://solofemininity.blogs.com/posts/2009/07/power-to-the-people.html.

    I was mind-blowingly blessed to be able to breast feed my son until just before his second birthday with almost no hitches at all, so formula was not something I ever even had to consider. Lord willing that will be the case with any other children I get to have, too. Formula really scares me simply because I don’t trust the regulative agencies who are supposed to be keeping it safe. This is not a statement of judgment on ANY other decision other mothers make — I know plenty who’ve had very legitimate needs for formula and had to put up with a lot of unwarranted grief as a result. However, I do with we had better information about what is allowed into our food products and how.

    Last, I just wanted to speak a word of encouragement to you regarding your children and their various allergies and health problems in combination with yours and your husband’s. 1 Peter encourages believers to understand that suffering and trial, while hard to be sure, is meant to refine us and is therefore a sign of God’s great love for His children. He is sovereign — even over cracked and bleeding baby cheeks and lamb-and-pear-dinners-for-a-month. Romans promises us that God takes ALL things and works them for the good of those who love Him. And so he redeems and makes beautiful and fruitful even the hard things that make us weep and that we don’t understand. I don’t mean to preach at all. Rather, I hope this is encouraging to you.

    • Mary, that was an INCREDIBLY encouraging comment. What’s your blog addy? I will definitely read that link, too, though, like you, NONE of my kids ever went on formula at all…

      • I’m so glad it came across the way it intended. my blog is just a small personal deal — merlotmudpies.wordpress.com. 🙂 I’ve added you to my blog surfer list. Carry on, sister!

  10. Ugh. Man, I am so sorry to hear that things are still up in the air with this. My dad has recently found out that he can’t eat a ton of things, which is adding a huge stress to my mom as she tries to figure out what to feed him.

    Hang in there!

    ~Luke

    • Luke, I have read about your Dad’s health and dietary situation. I am certain that what he’s trying will improve his health!! HOWEVER, it’s all I can do to not shake his shoulders and get him to go on a gluten-free diet. With his health history and at least two autoimmune disorders, and “wheat allergy” in the family, I want to yell at him to get tested for celiac disease (which I suggested, but I don’t know if he had done, though the idea of CD being comorbid with a host of other autoimmune disorders piqued his interest). The diet he’s on is gluten-reduced, but not gluten-free… 😦 BTW, he has referred to at least one of his kids having that “wheat allergy” — is that you??

  11. You poor family! I can relate. I have passed on Celiac to both of my kids. I suffer from autoimmune disorders and multiple allergies too. At one time I had no idea what was wrong with my kids and there was nothing more disturbing then feeling confused and helpless. I will pray for you to get all of your answers.

  12. AW, poor thing. You definitely shouldn’t feel guilt, these things happen … and more and more these days than ever! I hardly know of a person who doesn’t have some sort of autoimmune disease or skin condition of some kind. Crazy!

    I hope your little on gets better and if you choose elimination, good luck!

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