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. 🙂
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.