Fi-Fie-Fo-Fum Update

  • First of all, I am so very incredibly thankful for my friend Elizabeth (don’t know if she wants to be named here… she’s a family practice doctor who lives in Alaska).  She has totally taken up Fiala’s cause, and with her medical guidance and spiritual insight, we are making fabulous headway.  I would be so lost without her.  I keep thinking, “Why couldn’t another doctor, one of the many we’ve seen in this last year, have had the wisdom and care that Elizabeth has had?”  I don’t know the answer to that, but I am absolutely thankful to both her and the Father for sending her my way.
  • Fiala’s skin is 95% better.  I’m not sure if it’s the 2½ weeks of antibiotics (2½ weeks to go, still!  She’s now on Septra, which has worked MUCH better than Keflex) that has cleared up the staph, which has healed her skin… or, if it’s the Protopic + triamcinolone + Vaseline regimen.  Today was also the last day of a 5-day prednisone prescription (a.k.a. “evil juice” — it’s AWFUL).  Lots o’ meds.  However, I am so, so, so, so happy that she is not an oozy, itchy, scabby, miserable baby any longer.  I look forward to her being off of medication, though, and boosting her immune system via nutrition and supplements, and seeing if she can “hold” the healing while off meds.  Yes, I was hoping to treat everything homeopathically, naturally, but that hasn’t been possible.  Hopefully, she will have “just” five weeks of hitting the meds hard and then we can get her off of them.
  • Before Septra - Taken 01/14/10

  • After Septra - Taken today, 01/27/10 (With big brother Grant)

  • Fiala is officially weaned, at 15 months.  That’s both happy and sad.  I Freecycled the Boppy pillow, because she kept bringing it to me, asking with sweet hopefulness, “Nuh-nuh??”  And now, she just sadly shakes her head, “Nuh-nuh gah-gah.”  Nuh-nuh all gone.  😦  So, now, I’m not on the Total Elimination Diet, but I’m not going hog-wild.  I told myself I was going to get a pint of Ben & Jerry’s Karamel Sutra to celebrate when I was able to eat real food, but I haven’t done that yet.  We actually ate out at a restaurant on Sunday, which then gave me an afternoon-long, food-related stomach ache, the first stomach ache I’d had in four months… (other than when we, apparently, got some bad black beans a few weeks ago)  So, I’m still going pretty slow.
  • Fiala is still on a restricted diet, but we are expanding it with some success.  She currently can eat lamb, turkey, buckwheat (though she’s sick of it), almost all beans, quinoa, gluten-free oats, every vege in the mustard family (broccoli, bok choy, cabbage, cauliflower, collard greens), every vege in the beet family (beets, red chard, spinach), blueberries (cranberries, too, but I super-limit those because we haven’t found any dried that have no sugar, and the fresh ones are way too tart!).  She also has had good success lately with organic apples, and I’ve been able to give her a little bit of honey.  Her favorite things are blueberries and raw broccoli core.  I also have her on a vitamin that she loves:  Children’s Chewables from Michael’s Naturopathic Programs.  It’s the only gluten-free, sugar-free, at-least-partly-whole food vitamin AND mineral.  And, it’s not crazy-expensive, bless God.  Looking at the list above, I guess that still doesn’t seem like a whole lot… but it’s SO BROAD compared to a month or six weeks ago.
  • In the last couple of weeks, she has had BAD reactions to prunes — I should have figured that out before I even tried them;  she had a bad reaction to almonds in the past, and they’re related.  She actually got hives in her diaper area everywhere the prune-poop touched. Even where a bit of prune skin had blown out the side, where it was touching her skin was a correspondingly-shaped welt.  So, everything in the plum family is out (peaches, apricots, plums, almonds).   And, she had a bad reaction to banana (gassy, fussy, red, itchy skin, and caustic poop).  STILL.  At this point, her diet is expanding more rapidly than it’s contracting, if that makes sense.  I am very encouraged.
  • SHE’S SLEEPING THROUGH THE NIGHT.  Not every single night, but close to it.  Last night, she slept from 7:15 p.m. – 5:00 a.m., and the previous night was similar.  Most nights, she’s been sleeping at least one good 6-8 hour jag.  There have been a number of nights where she has a very hard time going back to sleep, and I’ve been up for 1½ – 2 hours with a fussy, crying, sad baby.  But, it’s definitely been two-steps-forward, one-step-back progress.  We moved her crib into the girls’ room (and moved Audrey, temporarily, into our room), and that — along with just saying no to nursing at night — has spurred the success, along with her general healing, which has taken away her itchy, restless misery.
  • When we’re off of Septra, we will address strengthening her immune system, via nutrition and supplements.  I’m having chicken-and-egg thoughts:  Was her immune system weak from the beginning, which led her to be so badly infected with staph?  Or is her immune system exhausted from fighting staph for what appears to be her WHOLE LIFE?  I’m holding out hope that it’s the second, and once the staph is gone, she will recover to great health.
  • Overall, though there are many readers on here who are homeopathic/naturopathic-minded like myself, I hope you will rejoice with me at the wonderful leaps and bounds we’ve gained in Sweet Fi’s health.
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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 January 27, 2010, in Babies, Digestive Woes, Encouragement, Family, Friendships, Medical Stuff, Motherhood, The Kids, Total Elimination Diet. Bookmark the permalink. 13 Comments.

  1. This is AWESOME news. I’ve been praying for her and you! I have a friend here in Charlotte whose baby is going through so many similar symptoms with no medical cause to be found. I am thanking God for Fiala’s progress & asking Him for it to continue! Please pray for Baby A. if he comes mind/heart. Great to read your update!

    • Sarah, could Baby A have staph as well? It can affect both skin and digestion!

      I forgot to mention that other than the hour before and after she takes antibiotics, Fiala is drinking water all day long that contains a scoop of Solaray’s BabyLife probiotics, and she has had NO problems with diarrhea, and only very minimal problems with yeast overgrowth in her diaper area.

  2. Yeah, Karen, so happy to see the before/after picts. May this be it.

  3. That poor, poor baby. Thankyou Lord Jesus that you hear our cries, and you answer with practical, sound help. I love Him!

  4. the before and after pics are just stunning. And I’m so glad to hear you’re finally getting some helpful, trustworthy advice!

  5. I am SO happy for her! she looks great! I pray this keeps moving forward and she keeps healing. it sounds like you really have a handle on things at the moment. good job mama!

  6. That is such wonderful news! You are doing a great job.

  7. Have you seen the dried cranberries sweetened with fruit juice? Would that work for you? Maybe we have them up here since we harvest many locally? (This is Dawn from ItsTrichy, I don’t know why my login got changed to my other blogID.)

  8. I’m definitely a ‘whatever it takes’ sort of parent when it comes to getting my children well. Natural, organic, non-chemical is better where possible, but sometimes things like antibiotics are irreplaceable. I think it’s just the overuse of medicines that I oppose.

    I’m so glad that Fiala’s skin has so greatly improved – I’ve been reading your blog since before her birth and so I’ve watched your journey with her. I pray that this signals the beginning of bigger and better things, and that everything is on the up for her now.

  9. ABSOLUTELY REJOICING! She looks great! Praise God

  10. newbeginnings09

    This is AMAZING!! Our God is an awesome God!

  11. Wow,so WONDERFUL! my goodness that’s ALOT of food!!! How did you do it? How did you know which ones to give? Why particularly goats milk? Are you using Fresh goats milk or powdered? Would Dr Elizabeth be open to a long-distance consultation for us too ? Sleeping through the night…truly happy for you, the “Nuh-nuh gah-gah.” Nuh-nuh all gone.is bittersweet and broke my heart…Im so so happy for YOU (both)!

    • About what foods to give: We started with ones in the same family that she was already eating well. Cabbage is in the mustard family, so we theorized that everything in the mustard family is safe. And it was! With quinoa, well, I had already (unsuccessfully) tried a LOT of grains, but had never tried quinoa. It worked! Same with oats. I stuck w/ g.f. oats, just to be safe (though I don’t think she has celiac disease). And, frankly, I’m SHOCKED that her body tolerates goat’s milk, because she does horribly with any cow dairy. We’re using fresh, and 100% goat’s milk kefir. But, she literally only has about 5-6 oz per week, because she just doesn’t like it, and that’s about all I can sneak in (usually into her oatmeal).

      By the way, her face rash is back just a bit: Last week, I let her try corn, potatoes, and chicken. I was HOPING it was the potatoes that were the problem, so I took them out of her diet again, but the rash is still there (and worsening). So, the culprit is likely corn. 😦

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