Fiala/Titanic – Oh God Oh God Oh God!

Sunday, my pastor, Dennis Bourns, had a sermon that wasn’t.  He said that he meant to speak on thankfulness, but instead relayed a number of stories from a recent ministry trip to Northern Ireland.  I’m glad he did.  The theme running through the stories was about depending on God.  He called it something like steering clear of the iceberg, where you can see that your Titanic is definitely heading for disaster, and all you can do is pray, “Oh God oh God oh God!”  Then, He responds, and alerts you, or opens your eyes, to a way out, one that you would not have previously considered.

I needed to hear that.  It seems I can see my ship on the path to destruction, and too many times, I just brace for impact, instead of asking Him to divert the ship, or come up with some sort of Plan B.

Afterward, Dennis asked each of us to participate in a time of corporate prayer, each praying individually for that “iceberg” in our lives.  I prayed for my 11 year old son Grant, who, I’m afraid, is bent on destroying himself and taking down as many people as possible with him.  That’s a “gift” of motherhood, by the way:  Extrapolation — perceiving events the events of today, and envisioning a possible/likely future if things proceed down the current path.  That can be both a blessing and a curse.

I asked my hubby what his was, and he said, “Fiala.”  I do understand that.  A day or two previous, he called her situation “distressing.”  It is.  She’s in the middle of the worst outbreak she’s had in a year.  Head to toe with eczema — BAD every-square-inch-of-her-body-covered, sandpapery, intensely itchy eczema — and on top of that, it got infected (impetigo), so now she’s on antibiotics (Septra).  In addition, she’s broken out with a different kind of rash…  I think it might be related to the impetigo, but I’m not sure.  It looks different than her “standard” eczema, larger, redder papules.  She is absolutely miserable, and it’s heartbreaking.  Right now, we’re totally praying, “Oh God oh God oh God,” because we simply don’t know how to proceed.

For now, in addition to

  • Septra
  • Various topical remedies (including olive oil, Vaseline, and bacitracin — when she can handle it, because when her skin is really raw, it stings too badly)
  • Hydroxazine for itching (which seems to work, but also makes her giddy/hyper)
  • Bleach baths 2-4x/week (the doctor we saw at the urgent care center said to do it every day for the next week or two, but that’s too irritating to her skin),

we’re taking her diet down to “bare bones” as my hubby calls it — the foods that we know are the least likely to cause a skin reaction.  That means lamb, garbanzo beans/flour, oats, blueberries, all the veggies of the brassica family, olive oil, cinnamon, and stevia.  That’s it.  On one hand, that sounds like a lot of food — and it is definitely enough food on which to survive.  But, on the other hand, it is a very simple diet for a sweet little two year old girl who loves to eat, and she spends a lot of her day asking for food (food other than what she can have) and feeling left out, often crying over missed food.  Obviously, the things that are hardest for her to understand are foods that we’ve previously OK’ed, but are now taboo, particularly maple syrup, honey, and a wee bit of sugar (like in her all-blueberry organic jam).  It’s hard to say no.  I caved and gave her cranberries on Sunday, and she paid a dear price for it on Monday.  I had been thinking that her previous bad reaction to cranberries was tied to the corn syrup in Craisins.  So, I got a variety from Trader Joe’s that is sweetened with real sugar.  She was SO VERY MISERABLE on Monday (yesterday)… that did it.  I have buckled down on her bare bones diet, with no risks allowed.  Already today, she’s doing better than yesterday, although only nominally so.

I’m thinking a trip to the pediatric g.i. doc is in our future.  My hubby hasn’t been much in favor of that, since, in the last year, I’ve done a good job of managing her care, and Doctor Mama doesn’t cost a $50 specialist co-pay.  But, I’d been considering it anyway, as Fi doesn’t appear to be making any improvements, digestive- and skin-wise, and I’m feeling rather lost without some doctoral care.  And, these last two weeks (when her skin has gotten awfully terrible again) has rather spurred me on to re-prioritize finding a doctor for her.  I mean, I haven’t made a appointment or anything yet.  But, I’m thinking that we’ll need to take that step.

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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 November 30, 2010, in Allergies, Digestive Woes, Family, Health, Medical Stuff, Sad Things, The Dear Hubby, The Kids, Total Elimination Diet, Vineyard Phoenix. Bookmark the permalink. 16 Comments.

  1. Have you tried raw milk and real kifer? I’m new to your site, but it has really helped my children, both of whom are autistic and have celiac sprue and multiple allergies. It took about a year, but as long as we don’t give them artificial anything they can eat just fine. Our youngest was like your daughter, and we were egg, wheat, soy, oat, corn, nut, peanut and everything else -free for ages while he healed. The neat thing is that at such a young (he was 2)kids heal quickly. It takes a lot of milk and kefir to really make a difference, like it’s 1/2 gallon a day, but it was worth it for us. In fact, we raise goats now to keep getting milk.

    • Hey, thanks for the comment! I have tried kefir — real goat kefir. But, it’s been a while. Is there some sort of protocol you followed? I don’t know if that would be right for us, but it’s something I’d check out… Can’t raise any goats where we’re at, though!!! And, raw goat or cow milk is in short supply — I’d have to buy a farm share (abt $30/month for a gallon per week, plus a 60 mile roundtrip each week).

      My youngest son was dx’ed with celiac disease 8 years ago, and is asthmatic with dairy, so we’ve been GFCF for a long time… He can, however, eat sheep cheese, which is a fairly recent discovery. His asthma was triggered (almost anaphylactic) even with raw goat kefir.

      • Well, I bought mini-goats since we only have a small backyard and I make sure I buy really good feed (you know how your milk takes up stuff you eat and passes it on to your baby? My philosophy is the same about the animals milk, so no soy, binders, or antibiotics for my girls). If your son reacted so badly it may be he was too sick to handle it. When kefir is prepared right it digests lactose and casein from the milk, though some will still remain. When we make it we strain it after 24 hours and then let it sit out lightly covered for another 24. It will cause a major reaction in someone who’s gut is in bad shape, and should be introduced very slowly, like a tablespoon a day to start with.

        I’m sorry you don’t have access to the raw milk from a closer supplier! It would make it hard to try something. That’s why we bought our goats. I wasn’t even sure we would be able to use the milk as we all had reactions to milk in the store. It seems the pasteurization was the main problem for us, but then, a goat I just bought in milk had been chemically wormed and caused reactions in my boys until it worked out of her system. I wonder, some farms around here will sell a persons share all at once, like 4 gallons at one time, and then you can freeze the milk. It separates, but is fine for kifer and puddings and such. It just looks funny!

        We found that the more we heal, the more we could eat of natural stuff. At the same time, we could handle less and less of the bad stuff (like food colors and preservatives). I hope you have success figuring out whats going on with your daughter, but she really sounds like my younger son when he was 2 and it turned out to be the celiac.

        As another note, have you tried soap nuts to help your daughters skin? It is used in Aryuviac (?) medicine to topically heal skin issues, like excema and infections. It can be very drying, but so is everything else. I buy them for us for everything since the boys and I can’t have anything at all from the store for washing us and clothes. You boil a handful of nuts for an hour, cool and strain. Store in the fridge to use as shampoo, soap, laundry detergent, etc. It’s very mild, and can be used safely with babies. Only thing I would note is that if you have parasites like lice it will cause them to go into distress as it kills them. I buy them from NaturOli. They are the cheapest quality ones I have found, but it has done wonders for us. My husband washed with suave shampoo, then took a bath with our boys, and the elder got out of the tub covered in hives as big as whole pecans! Raw milk, kifer, and soap nuts have been key to us surviving, that and going gluten-free. I’m on WordPress as Nigerian Meadows Farm Diary if you want to look me up. I have links to soap nut places, and kifer, etc. though it’s kind of a small site. Sometimes, just surviving each hour is all you can do. My prayers are with your family, for where believers pray together, their prayers will be answered!

        P.S. Sorry for the lengthy comment *blush* I really feel for you guys!

        • Just to be clear, the kefir caused a bad reaction in my son, Wesley, who is 9. This was fairly recently. He is gluten-free because of celiac disease, and dairy-free because of allergy. He is actually in really good health, provided that he avoids gluten and dairy. And peanuts. He’s anaphylactic to peanuts.

          Our families, on both sides, have a history of autoimmune problems — the serious ones mostly on my side, but my hubby’s side, too, has asthma and
          eczema and the like.

          We’re actually very healthy, clean eaters, and have been for years.

          I do believe that many health problems are caused by over-processing, stripping foods of their naturally healthy properties, and then trying to
          artificially prop them up with added, artificially derived vitamins that “enrich”. And hydrogenated oils. And preservatives. And myriad of chemicals. And poor farming practices. And much of my alertness to these
          issues stemmed from Wesley being dx’ed with celiac disease eight years ago, and my continuing study into how the world around us and what we put into ourselves really DOES AFFECT our lives and health.

          But, I also believe that there are some people who, due to the fact that we live in a fallen world, are born with illnesses or predispositions to disorders which really have nothing to do with what the child ate, or the parent ate, and cannot be healed with good diet.

          I’m not suggesting that good diet should be avoided; I strive to provide clean, healthy, well-balanced food for my family, organic when possible.

          But, I don’t believe that X, Y, or Z food or supplement is the “key” to our family’s health ills, and that if we just eat or take it, we’ll be miraculously better.

          Now, of course, I may be wrong on that. But, I just don’t believe kefir is a cure-all. Or that if we just follow some specific protocol we may be healed from celiac disease.

          (By the way, though I have not tried soap nuts, I make my own laundry soap, from Kirk’s Castile Soap, baking soda, washing soda, and borax. And Suave shampoo makes my 4yo daughter’s head peel.)

          What I most strongly believe in, is the miraculous, healing power of my Savior, Jesus. I believe that He can, at His choosing, and by His mercy, and through His love, reach down and fill our bodies with His power and set everything to rights, and restore our bodies to function in the way He created — with Adam and Eve.

          What I mean is that, while I do believe that there is *SOME* underlying issue, especially in my youngest daughter, Fiala, which has been undetected thus far, I would be very surprised if the “key” was that she was deficient in some nutrient. She is 25 months, and first exhibited symptoms when she was 2 months old, when she was 100% breastfed, while I was on a clean, healthy, GFCF diet, which I had also maintained while pregnant with her. (Well, I was on a clean GF diet while pregnant, and consumed minimal dairy.)

          I will, indeed, continue to strive to eliminate chemicals from my home (that’s an ongoing process!), and eat healthier and cleaner… But, I don’t believe — at all — that her symptoms, or really, the rest of our family’s various symptoms (like my 11yo’s high-functioning autism, and my 9yo’s and 4yo’s celiac disease) are *CAUSED*, at their root, from a deficiency.
          Unfortunately, I think my husband and myself have created the perfect storm, via our genes, of autoimmune problems in our precious children. HOWEVER, I also feel very strongly that God Himself brought us together, that His plans
          are perfect, that we were meant, by Him, to bring our children into existence, no matter what their “problems” are, they serve a purpose for the
          Kingdom of God, and I strongly believe that the world is better for their existence, not to mention how *I* am better for them, and I look forward with high and excited expectation to see what God’s plans are for their lives. It brings a giddy feeling to my heart, really, as I anticipate seeing unfold all that God has in mind for each of them.

          I hope this is coming across with gentleness and clarity and love. I do admit to feeling a bit of defensiveness…. Only recently, I had a dear
          friend suggest to me a similar thing: If I just took X, Y, or Z supplement, or if I just fed my children X, Y, or Z whatever, that they would be cured from celiac disease, and that it clearly stems from a lack of nutrients because he heard it from this homeopathic doctor on the radio. I had to restrain myself, and respond in love, yet refute what he was telling me, which was, in essence, I was at fault for my own celiac disease, and the ills of any/all of my children. I really think that words like that are
          condemnation from the enemy, and not the truth.

          So… I would just caution you, my new friend, on your evangelism to a kefir/gluten-free/soap nuts, et al existence. None of it is necessarily a
          cure-all, and while I absolutely congratulate you on finding things that work for your family, just because something worked wonders for you doesn’t
          necessarily mean that the same thing is what another person/family needs, even one who exhibits similar symptoms.

          It’s rather like how I adore red meat, and can eat it endlessly, and feel bereft when I go without it for too long. I have to get a yearly physical, with the insurance we have, and my cholesterol numbers are so stellar, the doc says it looks like I’m on meds. Obviously, I’m not. But, there are other people who may eat a similarly clean diet but whose physiology simply
          does not allow for them to be able to safely eat the amount of red meat I do, and their cholesterol number would shoot through the roof if they ate as much red meat and eggs that I do!! Everyone’s bodies work differently, and
          one solution (be it from diet, or naturopathy, or conventional medicine, or whatever) may work miracles on one person, but be absolutely detrimental to another.

          (You thought *YOU* had a long comment!!)

          I congratulate you if you’ve read thus far… And, I’m sorry I’m so wordy. And, I know that all your suggestions have been generously supplied in
          kindness….

          I hope you understand.

          • Great response! Sorry I made you feel you had to defend yourself. Everything you just said follows my thoughts and feelings exactly. I didn’t mean it to be a cure-all response at all! Heavens, people told me since my kids had autism the last thing they should have is dairy, lol! I would rather you delete the comment than have people think it’s a perfect recipe for success. I hesitated to even mention some of these things since I haven’t read your blogs long enough to know what you have and have not tried, but wanted to share if you thought it would be worth checking into. Yes, after 3 long years of trying everything under the sun, I found a few things that have helped, and I am blessed enough to have them work. I have tried many more that others swore by that failed or made things worse. The rich, way back in history, chose marriages to create children of high intelligence and optimal health, and the term “well-bred” actually meant that very thing. Today we function on love, and yes, we often create our own sick society, but I would not wish to have not had my spouse or our children, no matter the health issues. I commend you for your clear stance, and really feel bad for hurting you. Please know it was never my intention 😦

  2. I’m so sorry Karen. This breaks my heart – for each of you. I bless that prayer for the Lord to divert the iceburg, or the Titanic. May He release just the right help at just the right time. Love and blessings to your family – Kathy

  3. Hey there – I’m a local subscriber/lurker, and I think I may have recommended this before, but given your family’s troubles (celiac, autism, Fiala’s troubles) you might want to look into the Specific Carbohydrate Diet and/or the GAPS protocol (very closely related). I am myself a celiac who will soon be returning to the SCD due to a recurrence of all manner of symptoms, including exzema, and would love to talk with you more about this if you’re interested. I also have the requisite books (Breaking the Vicious Cycle and various cookbooks, etc.) if you wanted to borrow them. We currently live in central Phoenix but are moving to Peoria next week, not sure where you’re located but it’s an option to consider. I’ve heard miraculous stories both about food intolerances and autistic kids on the SCD boards. Feel free to ignore this, but I just wanted to mention it as a possibility for your family.

    • Hey, welcome to the neighborhood! I’m going to shoot you an e-mail and ask where you’ll be living.

      Basically, other than oats, she’s on the SCD. I read “Breaking…” when my youngest son (who is 9) was first dx’ed with CD… so, it’s been 8 years or so. I’m definitely familiar with it. One of my favorite food blogs is http://www.affairsofliving.com, and most of what she posts is SCD-friendly. The only problem I have with the SCD is that it’s not the cure-ALL, which it touts itself to be. And, I’m not necessarily totally anti-grain. HOWEVER, reading about it definitely alerted me to the importance of simple carbs…

      However, I may just borrow those books, to reacquaint myself. 🙂 You rock for offering!!

  4. Ditto what Kathy said. I keep praying that you and/or her doctors will discover some underlying key to her issues, and the lock to fit it.

  5. Xoxo. I will see you and little Fi soon.

  6. Hello Karen Joy,

    You are in my thoughts and I am praying for Fiala’s health, for you and your hubby as you seek medical attention. God be with you.

    Carol

  7. Hi,

    Has anyone suggested real silk sheets as a possible allergy/eczema helper?

    My evidence for this is second-hand and anecdotal, but supposedly it practically cured a friend of a friend who had multiple allergies and eczema. My friend recommended it several times to me when my own daughter had (mild) eczema; I didn’t try it because I got the eczema under control via diet.

    I hope your little girl recovers soon, soon, soon. And thank you for sharing your excellent flour blend :).

  8. Hey do you think that you could email me privately about some of the issues with your son. I know I have asked a few specific questions but it seems so like my 14 yo. I am so desperate to find something, anything that might help him.

  9. Hi! I came across your blog while surfingfor zucchini allergy 🙂 And just reading a few posts under the Allergy tag made me want to run to you and hug you! Coz you see, my daughter and I are having serious allergy issues which instead of getting better are getting worse, despite being on a very restricted diet 😦

    In desperation, we went on a vegetable and fruit (apple, pear, grapes) diet for 10 days just for some improvement. But nah, zilch, nada 😦 Isn’t that totally frustrating? Then yesterday for dinner we had just stir fried zucchini in grapeseed oil and my lips stung and swelled. Her eczema patches itched terribly and that’s when I discovered that a zucchini allergy is that rare!

    Anyway I love long reply to a reader esp this part…. “What I most strongly believe in, is the miraculous, healing power of my Savior, Jesus. I believe that He can, at His choosing, and by His mercy, and through His love, reach down and fill our bodies with His power and set everything to rights, and restore our bodies to function in the way He created — with Adam and Eve.” AMEN sister! AMEN!

    • Serene, thank you for stopping by, and thank you for the comment!

      How old is your daughter? What CAN she eat? Fiala will be three years old later this month and is still on a very, very restricted diet. She can eat everything in the brassica family (cabbage, cauli, broccoli), every veggie in the mustard family (mustard greens, turnips, etc.), most legumes, oats, lamb (and possibly “clean” pork), blueberries, and not much else. There are a few other things (lettuce, honey, beef, a few herbs like rosemary, citrus, raw dairy, sheepmilk cheese), that we are half-way thinking are OK for her, so we let her eat them in moderation, on occasion. That’s pretty much it.

      I don’t know how much help I can be; no miraculous healing here (yet!)… but I can hopefully encourage you!

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