For the next two weeks…

…Fiala and I will be living on buckwheat, millet, and lamb.

We went to the allergist/immunologist today.  He spent a good 45 minutes with us, which was encouraging after an hour and 25 minutes’ wait.  I have no idea why the wait was so long… maybe he was spending 45 minutes with everyone today!

He recommended two major options:  Either put Fiala on an elemental formula (like Neocate), or eliminate everything from our diets except for rice and lamb… uh, no… she’s allergic to rice, that’s right… OK.  Any grain she can have?  She seems to tolerate both buckwheat (which is technically a fruit, oddly enough) and millet.  OK, then.  Buckwheat, millet, and lamb, and keep nursing.

He said that he thinks the breastmilk route is definitely the most preferable, but that he’s only had a handful of patients in his history as a doctor who have been able to successfully stick to a complete elimination diet.  I’m confident that I can add to that small number.

I told him that I was heartbroken and frustrated, and he seemed to really understand that.  He understood, as well, when I said that we were considering some sort of alternative medicine because I didn’t feel like we were getting good enough information, fast enough.  He suggested that route as a second-opinion kind of thing, or supplemental, though he did suggest that we wait at least the two weeks on the new diet to see what the results are.  Which we will likely do, but it made my husband laugh with rare cynicism (my husband is SO not a cynic) that the doctor recommended that.  “Well, of course.  He’s a medical doctor.”  And, yes, since that’s his tool, that’s what he’s going to recommend the highest.  But, I don’t think it’s unreasonable to hold off for two weeks, in any case.

At the end of two weeks, I’m to CALL him, rather than come in, thereby saving $50.  Bless God.

If there is good improvement, we’re going to very slowly introduce foods, one every 3-5 days.

If there has not been enough improvement in both her skin and her digestion in two weeks, he suggested that we try an elemental formula for two additional weeks (which their office can supply, in samples, for free), that I take Fiala to a pediatric gastroenterologist, and that he (the allergist/immunologist) would start looking into more serious immune problems (like EE or similar).

Though he agreed with my assertion that steroid creams are only a short-term solution, he recommended that I really hit it hard, as far as medicating her, for the next two weeks, just to get her skin healed, so that we have a baseline from which to work.  Up until now, I’ve mostly been medicating to… keep her eczema under moderate control, so that it never gets bad enough that she gets infected.  I just hate slathering all those medications on her, plus it’s just so time-consuming to keep up with.  However, I can see the benefit of her having “clean” skin, even if it’s just from medicine (which seems FAKE to me, not actual healing) — because, for example, when she had a bad reaction to peaches, I was then wondering, during the two weeks that it took for that rash to clear up, if each food I gave her was making her skin better or worse;  the answers were obscured when her skin was already bad, if that makes sense.  But, if I think about it in the sense of, “It’s only for two weeks,” I can more easily adjust my thoughts to medicating her, rather than have the dread that we’re just going to keep masking her symptoms for life, or whatever.

He was also very interested in our success with gentian violet, and was going to look more into that, especially when I told him it successfully treats impetigo, as well as the yeast infection for which I was using it.

So, all in all, I feel better.  I feel like we have a plan of action that I can agree with, and that I have hope for.

Add to that, that Fiala hasn’t had any diarrhea in the last three days, since I started her on beans, millet, and buckwheat only.  Healthy poop for three days.  That’s fabulous.  (The doc said, “No beans” on the new diet, though.)

And, over ALL of that… Church was so fabulous yesterday, just what I needed.  After worship, there were two prophetic words given — well, I think there were more than two, but these ones really spoke to me.  The first was given by a guy named Damion, and here are the notes I gook on it:

“Look for the trickle.  It’s like the trickle that comes out of a dam before the dam breaks and lets loose a flood of water.  So, don’t be discouraged or discount the trickle because there’s a flood to come.”

That was encouraging, because there HAVE been small things, small improvements, baby steps… but I tend to overlook them in my search of TOTAL HEALING.  And, I think I need to pay closer attention to the trickle of improvements, instead of just chucking them out the window.

And then, from my friend Sheila, a very simple and pretty, but to me, very profound word that said,

“If you come and sit at my feet, I will look on you lovingly.  Will you trust me?”

I just needed to hear both of those things, both the hope of the first and the gentle admonition of the second.

God also gently revealed to me, during worship, that the reason I’ve found it hard to spend time with Him in the last couple of months is because I have been afraid, deep in my heart, of Fiala dying.  I had never even given words to that, but when He spoke to my heart, I just broke.  It was true.  People need to eat food in order to live.  Fiala seemingly can’t eat any food without it harming her.  She isn’t losing weight, but she has gained less than two pounds in the last nearly-five months, in spite of all I have done to bring her to health.  So, that thought, that fear of her death, had just crept into my heart and taken hold, without me even being aware of it, and was wreaking emotional havoc in my heart.  And, when I’m really upset about something, I tend to run FROM God, instead of TO Him.  Duh.  Wrong choice.  So, I needed to hear that He is calling me back to just sit at His feet, and let Him love me, and that I was to trust him…  And, when I came off the stage from worship (I was one of the backup singers), Nancy, my pastor’s wife, sought me out, and said, “It’s going to be OK.  We’re going to get on this, get more prayer out… Just don’t believe the lies of the enemy.”  Again, those few words of both encouragement, hope, and admonition, were JUST what I needed to hear.

So, though not a whole lot has changed since Friday, I feel loads better about Fiala’s situation.  Many thanks to everyone for their prayers.  Reading the comments from everyone made tears spring up time and again.  I so love the Body of Christ — both my local church, and the wider body of believers, worldwide…

The dam is going to break, the healing is going to come.  🙂

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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: 10, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I am a natural childbirth advocate and an erstwhile birthing class instructor. 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 September 14, 2009, in Allergies, Babies, Christian Living, Christianity, Digestive Woes, Encouragement, Medical Stuff, Motherhood, Parenting, Prophetic, The Dear Hubby, The Kids, Vineyard Phoenix, Worship. Bookmark the permalink. 13 Comments.

  1. glutenfree4goofs

    I can’t wait for the dam to break wide open! God is good and your words have encouraged me today too. 🙂

  2. I am so glad that you finally have a course of action that you feel good about. I was surprised to hear that buckwheat is OK for her, since in Japan it is considered highly allergenic, and most people don’t give it to their kids (eaten in the form of soba noodles) until they are two or three. That may be a genetic difference, though. Nuts are not considered a big deal here, because so few people are allergic.

    My close friend had to do this type of thing with two of her sons. They could only eat millet, white fish, and maybe a few vegetables. It did work, though, and they have been completely food allergy free ever since. I will pray for you and sweet Fiala. Keep us updated!

    • I have read, Sue, that some people are allergic to buckwheat… but my thought in delaying soba noodles is because maybe they’re not 100% buckwheat? The only ones I’ve seen, even in the Japanese section of my Asian market, are actually mostly wheat flour, then 20-60% buckwheat flour.

  3. I’m sitting here with tears in my eyes. I am so happy you had those words from God. You needed it, I can tell. God is so good!!

    I too run from him when I should run to Him. tonight I was saying that very thing to Him. sometimes it’s so odd how well you put your thoughts down and how much they mathc my own. having had Eva (KC) be sick I was so scared of her dying that now I fnd myself always worried Ven will be doomed to a life of pain or even death. I get overcome with the anxiety of it. sometimes i push it away but it’s there in the back of my mind.

    it is so hard ot mother someone and be a Christian. I really think it is. if it were just me I could say ot God “bring the pain, I can take it’ but how can one say that about there child? oh that is my weakest point! not my child. it hurts too bad to think of them suffering, youknow? it makes me suffer on such a deep level.

    anyhow I’m so glad for you and for fiala with this new doc. I am praying for you. would you mind sending up a prayer for Ven for me? I haven’t posted for a while about him and the whole allergy thing. I just deal with it so much I don’t feel like writing about it. I tried last night. I just couldn’t get the words out. I’m dealing with depression over it. but I know depression is just a gut-reaction to pain. you get nothing whenyou wallow in it… so I’m looking for that next step. a day at a time. anyhow sorry for the blog here (again!) but you touched my heart deeply.

    ((hugs)) to you and your little girl!

  4. May this lead to a breakthrough! I’m glad you’re feeling better about it because that’s a good sign in and of itself. Hang in there, and may Fiala’s skin clear up.

    ~Luke

  5. Gential Violet is a breastfeeding yeast infection cure…too bad doc hadn’t heard of it.
    Great post, the agreements and lies are insidious. May Fiala live well. You do need a baseline. Praying.

  6. Thankful for the baby steps and at least they are in the right direction. Admire your ability to stick with the elimination diet in order to continue nursing Fiala. Amazing what we hold on to inside and the relief that comes when we truly let it go and let God!!

  7. I’m so glad I checked in. First, PRAISE GOD for his gentle words over you. Secondly, I encourage you, although sooo hard, to stick with the elimination diet. Around Christmas, I was eating lamb, squash, and pears. I snuck a few peppers in, now and then, too. IT WAS SO HARD. I love to cook (and eat!) but in talking with the other moms of these extremely sensitive babies on the MSPI QuickTopic forum, those of us who still fought to breastfeed seem to be doing better. Many who switched to the AA formulas experienced a “honeymoon” and then their babies started to react to the formula. I have a very good GI who completely supported me in continuing breastfeeding, as well as a very knowledgeable allergist. If you want to call me, as this whole food stuff is so complex, email me and we’ll set it up. Abigail bled and had mucous and diarrhea for months…I was so freaked out about her so I understand your fears, etc. Another consideration…you can ask to drink an elemental formula yourself, too. And I know that this sounds just terrible, but one *positive* thing about her skin is that her skin lets you know what is going on on the inside. The GI tract can take 6 weeks to heal, so Abigail would still be having mucous and blood from something I ate weeks ago…it was so confusing. If her skin flares us, I hope at least it will be easier for you to know what is causing the trouble.
    As for food choices, what works is surprising in these babies. Everything I ate on my TED Abigail reacted to (except lamb) when I gave it to her later (squash, pears, sweet potatoes), so no wonder I didn’t see much results. These are usually not traditional allergies. Her first allergist laughed when I said that I thought she was reacting to rice (“no one is allergic to rice”). So if the buckwheat is working, go with it. Her allergist later told me that sweet potatoes and rice are ‘high on the list’ for EE, which Abigail does not have, but some similar process is occuring in her colon. Anyway, I am babbling, but since I have spent her almost entire 14 months thinking about everything I put into her mouth and mine, I hope that I can be of some help to you. Call me!

  8. I am praying for you and Fiala. I haven’t commented in a long time, but I do try to keep up with your blog still. I just read this verse tonight and reading this post made me think of it again: “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” I concur with the lady who said not to listen to Satan’s lies… Just to God’s comforting and healing voice. 🙂

  9. So glad to read this hope filled post! Praise God!!

  10. I just sent you an email. My son went from the 95th percentile of weight (at 12 months) to the 5th percentile (at 18 months.) He recovered thanks to the gluten free diet and many other alternative interventions. Everyone is different, but I have to share that the elimination diet never revealed my sons food intolerances. We finally got some answers when we did the ALCAT test. Anyway, it really helped when we desperately needed to know what was making him sick. I spoke to the company once after I blogged about my success with the test and they told me it measures inflammation of the cells after exposure to the food. Anyway, they have a home test kit that might give you some answers for 20 foods. It’s probably not a permanent solution for the problem, but it might help. Anyway, I have no financial ties to ALCAT, but it helped us several times when we needed to know what was making my son sick. Good luck with everything.

    ALCAT Food Sensitivity Testing

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