Fiala’s skin/allergist update — new doctor

After a mostly-unhelpful appointment with an allergist for Fiala last month*, I scheduled a follow-up appt with a different doc, one that a friend of mine sees for her own son.  Turned out her doc was actually in the same office as the doc I didn’t like.   I didn’t like the other doctor, because he basically said, “You’ll never find the source of all her allergies.  Yeah… we’ll test her a bit, but really, just eat what you like, feed her what you like, and here are SEVEN medications to mask her symptoms.”  I know that some people want to pop a pill instead of finding the source, but I want the source!   It seems crazy to me to feed her stuff that I know will cause her trouble, then give her medication morning, noon, and night to make up for it.

So, we saw the new doc this morning, and he was a lot more understanding and supportive of my approach for Fiala, which is to FIRST identify everything we can that is a problem, and then medicate as needed to fill in the gaps.

We’ll be doing patch testing this coming week, which requires four visits to the doctor’s office within eight days.  Patch testing is most often used for contact dermatitis — things that cause problems when they come into contact with the skin, and Fiala’s main problem is what she INGESTS, not what she touches.  But, the doc said he’s gotten good results for consumed food allergies and intolerances from patch testing.

If we can’t get good information from patch testing, I’ll be doing what is called an elimination diet, overseen by the doc, where I severely limit myself and Fiala as to what we can eat — starting with literally ONLY lamb and rice for a couple of weeks — and then adding things in one at a time to see where the problem is.  He did suggest that I could start her on Alimentum and just have her continue with testing, rather than me continuing to breastfeed and doing the elimination diet.  Bummer.  I declined, and he didn’t press.

Fiala is having skin problems and digestive problems, too.  When I mentioned mucous in her poop (which has become all the more obvious, after me switching to cloth diapers!  Ack!), he suggested that I see a ped g.i. doc, but I’m going to hold off on that until we wring as many answers from the allergist as possible.  I still don’t think Fiala has celiac disease — she just looks/acts very differently than Wes or Audrey did, most notably in that she LOVES to eat, and she looks very sturdy and chubby;  both Wes & Audrey were skinny, small, and very picky/whiny/unwilling eaters.   In some places, Fiala’s skin is getting better (like on her face), but that is from her taking medication that suppresses her immune system, and I don’t want to continue that, if at all possible.  She also now has impetigo (staph infection) on the back of both of her legs. We are treating that with organic raw honey (very messy!) right now**, which has helped, but if it doesn’t kick it entirely, I’ll have to put her back on antibiotics.

The doc was intrigued by the raw honey approach;  he said he’d never heard of it (!), and would look into it, and was very content to have me continue to treat her skin with honey, trusting that I’d fill the prescription, if I needed to.  He also wrote me a script for a lower dose of Protopic;  it’s debatable whether or not babies should be on Protopic at ALL, let alone the higher dose.  And, he wrote me a prescription for Atopiclair, which is a mostly naturally-derived, non-steroidal eczema ointment.  He mentioned that many insurances do not cover it;  I hope mine does… need to check on that.

He was also concerned that I really don’t have Wesley under a doctor’s care for his serious problems (celiac disease, anaphylaxis, asthma).  I explained that I was rather gunshy of doctors after really bad experiences with his previous allergist and pediatric gastrointerologist, and have been seeing our pediatrician regularly.  I let him know that if things went well with him and Fiala, he’d likely gain a new patient in Wesley.  😀  Before I said that, though, I must say that I was impressed by his concern of my son who is not a patient of his;  he was getting no pay for chatting with me about my 7yo son.  I was pleased that — unlike some doctors — he really seemed concerned about the health of others.

All in all, I felt like he listened better — really assimilating what I was saying;  not just waiting for me to shut up so he could make pronouncements that disregarded all my concerns and priorities, like the other doctor did.

And, he touched Fiala.  Several times.  It bothered me that the other doctor didn’t even touch her, but kind of peered at her from across the table.  The new doc peeled back the bandages on her legs, felt her skin in several places, gently poked and prodded her, looked in her nose and ears and throat, talked gently to her directly… all of which made me happy!  I don’t want just a verbal consultation with a doctor;  I want him/her to really look at what is going on with my child, and treat her like a person.

So.  I feel like we’re at least headed more in the right direction, even though I walked away with three more prescriptions, and a strong suggestion that I start both Wesley and Fiala on Xyrtec during the daytime.  He said, “I promise I’m not being paid for advertising Xyrtec.  If you have a Costco card, you can get the generic there for like $15 a gallon.”  He was exaggerating, of course, but it also made me happy that he was suggesting to me how to care for my kids and save money.  He also mentioned that with the four visits in the coming week that they will attempt to write it up in such a way that I don’t have to pay 4 co-pays, which would be fabulous, because our copay for specialists is a whopping FIFTY BUCKS a pop.

Anyways.  I just want Fiala WELL.  Healed.  For those of you tiring of reading about Fiala’s skin, it might seem like it’s been a long row to hoe, but it really doesn’t feel like that for me.  I continue to maintain hope and an expectation that we will, eventually, find the way on for her.

——————

*By the way, after Fiala tested positive on her skin for an allergy to banana, milk — whole and casein, almond, yeast, and egg, the doctor’s office eventually called back to say that the follow-up RAST blood testing I had done for Fiala only showed positive to egg.  But, with the new doctor, he said that she’d tested positive to milk, too!  Don’t know what’s up with that.  I have been eating almonds lately, and I’m thinking about putting banana and yeast back in my diet, as well.  In addition to the above allergens, I have noted a problem — either skin or poop — when I have eaten soy, potato, and tomato.  Plus, I have celiac disease, so no gluten.  So, I am free of gluten, soy, egg, milk, potato, tomato, yeast and banana.

**I am applying the raw honey to a gauze pad, then sealing it down with a big (2″ x 4″) Band-Aid.  I’m changing the dressing twice a day, morning and night.  Can anyone point the way to a site that has dosing information?  I just made up my own “dose,” as I couldn’t find any info on it online.  I mean, I found lots of sites that said raw honey (and/or Manuka honey) was good for the treatment of things, including impetigo, but no specific instructions for treatment.

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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 August 12, 2009, in Allergies, Babies, Celiac Disease, Digestive Woes, gluten-free, Medical Stuff, The Kids. Bookmark the permalink. 15 Comments.

  1. That is encouraging. That sweet little baby must be so patient too to let all these tests be done on her. I am still praying that you are going to get to the bottom of this and that she will be healed completely.

  2. I am so sorry that your sweet baby is having to go through this. With my second child I had something similar. He had mucus in his diapers and often the poop was green with red flakes throughout. We finally figured out that the red was blood. I tried an elimination diet of sorts, but we were living overseas where it was not as convenient to get allergen-free products. In the end I tried dropping milk, but did not see much improvement. Knowing what I know now, I would have changed so many things.

    We eventually took away milk and gluten. The blood went away, he started gaining weight, and he was much less fussy. Still, though, he has green and yellow poop most of the time. Here we are 10 years later and I don’t think we have completely solved the mystery. He had very extensive testing done and no real results.

    I had a friend whose child had similar issues. He doctor had her take her son’s diet down to hamburger meat, wild game, and butternut squash. After a month they were able to add back in other foods without the problems returning. I have seriously considered doing this for my child. First though, I have to sell him on squash. 🙂

    One other note. Due to a medication I was on, I was unable to breastfeed my first child. I was devastated, but by the time the medicine was out of my system, I could not get her to latch on. We had the same problems as with child number two and ended up with her on Alimentum. Not recommending you stop breastfeeding, but it was amazing how quickly she recovered. BTW, she does not tolerate dairy or gluten either.

    • Thanks, Betsy. But, oh… don’t tell me that we might not ever figure it out!! Hahaha! (I really am laughing in real life!) I refuse to believe that right now. 🙂

      I do feel relieved that formula is SSSOOOOOO much better than it was 30, 20, even 5 years ago, but since it’s still in my power to breastfeed, that’s definitely my first choice.

  3. is the egg allergy a problem if she has gotten shots? i know one of my acquaintances had a battle on mmr connected to egg somehow…

    • mmm…. Wow. I hadn’t thought of that. Her last shots were at 6 months; we didn’t go in (yet) for her 9 month “well baby” because, well, she’s not a “well baby” at this point. I’ll have to get her record out and see when MMR was administered.

  4. Oh, wild and game is redundant – sorry 🙂

  5. Oh, I had not thought about the MMR, but it does contain chicken embryo (among other yucky things). http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-2.pdf

  6. I have appreciated our doctor who has often suggested where I can get supplies cheaper. It really builds confidence that they aren’t just money gouging.

    ~Luke

  7. ((hugs)) I’m going through this with V again. last night I was crying b/c V is getting fussy and restless again. (see as a mom of refluxy colicy babies I”M sensitive to the fact that fussy and restless soon leads to colicy and screaming very quickly. it’s better to treat before it enters that level! though I bet an unexperienced someone would say I’m overreacting)

    anyhow he’s just not… veyr happy. I mena has happy moment (thank God!) but he is so restless. and he looks at me wiht this “fix it!” look andi haven’t a clue how. so I just try to distract. he still has reflux and slient reflux (he makes the face and winces) but it’s better than it was. however he has LIQUID poop. like zero consistancy. shoots out of his diaper every time.

    so now I’m giving up soy. that is hard! almost (but not quite) as has as gluten!

    I’m discouraged. I will happily go off whatever i need to. but tryign to figure it out drives me CRAZY! and seriously, I don’t know about you, KJ, but i am STARVING. really, I’m very hungry all of the time. so very hungry.

    you have all my sympathy and some!

    oh and the honey gauze thing – awesome trick! I doubt there is a “dose” in it. I bet you’re doing it exactly the right way.

  8. ok that was full of four billion typos. sorry about that. I type way too fast and it shows!

  9. p.s. again… we finally switched Eva to alumentum and nutramegin (sp?) b/c of all ehr allergies… and overnight it got big time bad. it just was aweful. my breastmilk dried up and we had no choice but to formula feed her.

    I totally encourage you to continue to BF if at all possible. Formula almost always aggravates allergies and especially excema.

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