Fiala’s “dermatologist” appointment

Yesterday, we finally had Fiala’s appointment with the “pediatric dermatologist.”  I put that in quotes, because, as I perpetually have difficulty obtaining usable information from Cigna’s website, I had called their helpline to get the name and number of a pediatric dermatologist, via a real person.  What that person gave me was the name and number of a pediatric allergist.  That’s OK, mostly, though I was taken aback that it was not until the exam room with the doctor, talking with him, that I discovered that he was not a dermatologist, but an allergist.  I also feel weird that, even though I talked fairly extensively with a nurse from the doctor’s office over the phone, the discrepancy between specialties was never brought up, even thought I know I said “pediatric dermatologist” to her, and expressed my surprise that a pediatric dermatologist would also, as a matter of course, offer to do skin testing during the first visit.  No matter, as it is likely that an allergist was of more help to us than a dermatologist.

I think the doctor must have read notes of my conversation with the nurse, because one of the first things he said to me was, “I know you want to treat this as naturally as possible.”  However, long story short, I left with a sheaf of FIVE prescriptions, advice for two additional OTC medications, and the full awareness that the doctor did not have much faith for the full healing of Fiala just from me altering her diet and mine.

My plan, after discussing it with my hubby, is to use one of the prescriptions (Keflex, as the doc did say that her face was infected with staph, just from looking at her, not from a culture), and for the next two weeks, avoid the foods we discovered, though the allergist, that she is also allergic to.  After the two weeks are up, if there is not significant improvement, we’ll go ahead and use the other prescriptions until the next appointment with the allergist, and ask for additional testing.

They gave me several sheets of lists of possible allergens, and asked me to circle the items to which I suspected she was allergic.  I had no idea how many or few to circle, so I did about 15 or 20, all food.  They added a number of environmental allergens, too.  The nurse did a prick on my arm to let me know how badly it hurt;  it didn’t.  In fact, when they were pricking Fiala’s back, she was curious, but not even in apparent discomfort, let alone pain.

I am taking the allergy results seriously;  we still need to follow up with RAST blood tests to each of the items for which she tested positive (we were to go to the lab following the appointment, but Fiala fell asleep, and I couldn’t bear to wake her).  However, the doctor nearly blew off my discussion about food intolerances vs. food allergies.  He just said that, yes, there are food allergies that take longer to show up, and if we want to, we can — at a later time — do patches on her back, to hold potential allergens against her skin for a longer period of time, to see if there’s a delayed reaction.  I must have misunderstood the information given to me over the phone, because I could have sworn that the nurse told me that the doctor would gather info on Fiala’s immediate reactions, PLUS I would view the allergic reactions at home so that we could know her quick reactions and her slower-to-surface reactions, all in one fell swoop.  I was incorrect about that;  the doctor’s appointment on Friday was just for her immediate reactions, and all the marks and serum were wiped off her back before we left for home.

I really didn’t know — outside of a few suspects — what to circle to have her poked for.  They said that the next time we come in, we can do some additional ones, especially if it seemed like we hadn’t pinpointed all of them.  That’s good, I guess.

So, the results are that she tested positive for banana, egg, milk, almond, and yeast.  Very surprisingly, she tested negative for soy and pecan.  I have most definitely seen an improvement in Fiala’s skin and digestion since taking soy out, so I will continue to omit that from our diets.  She also tested negative for all environmental allergens, which was a great relief to me, since those are much harder to control.  She also tested negative for corn, potato, and rice.  I can’t remember what else I had them test for, outside of avocado…

What we are going to do, based on the doctor’s recommendations:

  1. eliminate allergens
  2. take Keflex
  3. give Fiala a daily bath (previously, I bathed her 3x/week)

What we are not going to do:

  1. Use Pulmicort in our SVN (breathing machine) 1-2x a day, as a preventative.  (Since taking her off of soy about 3 weeks ago, she has not needed any breathing treatments, nor had any asthma attacks.)
  2. Use Albuterol every 4-6 hours “as needed.”  Well, we’ll use it truly as needed, as we have for the last several months, but as mentioned above, though she is raspy/rattle-y with a bit of congestion, she hasn’t had coughing fits/asthma since taking her off of soy.
  3. Use Protopic on her face twice daily.  Actually, as a treatment for eczema, I’m more of a fan of Protopic — which is a topical immunosuppressant — than I am of topical steroids.  However, before we use any of it, I want to see how great her improvement is with just dietary changes.
  4. Use triamcinolone (topical prescription steroid) on her body 2-4x/daily.
  5. Use Zyrtec (OTC) syrup 1-2x/daily

What we were doing that we will continue to do:

  1. Still eliminate soy (and gluten, of course), in addition to the allergens for which she tested positive.  I have previously been off of egg, but had gone back on.  Same with nuts, though it was like on, then off, then on, and now off again, even before yesterday’s appointment.
  2. Use Benedryl liquid, as needed, for extra-itchy nights, especially.
  3. Use the homemade olive oil and beeswax salve on her.  The doctor did agree that it can be very hard to find an effective, non-irritating lotion or salve.  He recommended Vanicream (which, last I checked at Target was more than $15!), but he said if my homemade salve is working, to go ahead and use it.

Out of all the allergens, the one that concerns me the greatest is yeast, as that can be very difficult to eliminate.  I was very surprised that her skin tested positive for that.  However, though I’m eliminating yeast from bread, I’m going to wait until I get super-concerned until I get the results from the RAST test.  Her skin reaction to yeast was only redness (erethyma?), and not a raised bump, so I’m hoping that ends up being a false positive.

If taking banana and yeast out of my diet — which are the only things I haven’t ever tried before — (in addition to the other items) doesn’t have any kind of impact after two weeks, I will go ahead and use Protopic for the two weeks leading up to our follow-up visit, and ask that we test her for both additional immediate allergies, and get patches for more long-term ones.

With the doctor himself, the thing that I’m of most concern, long-term, is the thing about him not really giving much credence to food intolerances;  he just equated them with allergies that take longer to surface.  Anyone have thoughts on that?  And, if an allergist is not the right kind of doctor for food intolerances, what is the right kind of doc??  Secondarily, I’m concerned about him talking out of both sides of his mouth — i.e., him saying, “I know you want to treat it naturally and I support that,” then following that up with, literally, “Use these SEVEN drugs on your baby.”  😦

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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 July 11, 2009, in Allergies, Babies, Digestive Woes, Medical Stuff. Bookmark the permalink. 15 Comments.

  1. Karen — is the yeast that she’s allergic to a dietary issue? You are way more informed than I so I ask this for curiosity sake only, I guess. For instance, thrush is caused by a yeast imbalance and there are natural yeasts of all kinds in the air and on fruits, etc. For instance, you can harvest yeast off of reg grapes to use in making a “wild yeast” sourdough bread. So, would eliminating yeast from your diet actually help Fiala? In addition, would some sort of probiotic/healthy bacteria introduction be a possibility? I am so uninformed that my questions may not even make sense. But this perked my interest. I’ve never even heard of yeast allergy before.

    • Your questions very much make sense!! Yes, I am very aware that there are all sorts of yeasts out there, and I’m desperately hoping that her RAST test shows that the yeast was a false positive. I just tried mixing a probiotic capsule’s contents with water, and it worked! So, I’ll try mixing it with a little bit of diluted juice for Fiala. I need to in any case, as she’s on antibiotics.

  2. Peaches are in the same food family as almonds — you may want to avoid peaches as well.

    • Thanks for the tip!! I had forgotten about that. Nutmeg, too, come to think of it. When we get the results of the RAST testing (which we are going to go do tomorrow morning), that’s when I’ll hit hard removing all the potential cross-reactive stuff, too.

  3. We had a similar aggravating experience when my husband went to the allergist. He tested negative for everything and since intolerances a take more trial and error to define and treat they were given very little attention. My husband cut out gluten back in oct has dropped a little to much weight and although he feels better he is still having digetive episodes. The lack of any medical test showing positive though makes most of our doctors skeptical instead of helpful. If you find a breed of dr that does well with intolerances I would love to know which one 🙂

    • I talked with a friend from church, and she recommended a different doctor in the same office as my “bad experience” doctor. She said that the other guy is much more experienced with food allergies and intolerances. He is “just” an allergist, too. So, if you’re in a large area that has a number of allergists, maybe you could call around/ask around to see which one is more experienced treating intolerances. Is your husband off of dairy, too?? If he’s had any kind of enteropathy (damage to his small intestine), he’ll be virtually unable to digest dairy products, as well. So, you may want to take him off of all dairy, at least temporarily, and see if that helps his digestion.

  4. I tested negative for wheat allergies, but I react very strongly to wheat in my diet. So allergy tests–especially the prick kind–don’t always detect sensitivities, which are different than pure allergies. Banana allergy isn’t too hard to handle, just make sure you also reduce her exposure to latex–so she doesn’t develop another allergy! 😉

  5. Kenzie didn’t test for any of her allergies at the allergist… he just wanted to treat her with a bunch of drugs, which irritated me beyond belief!

    I’ve always been told that bananas are pretty benign, what a bummer that she’s showing an allergy! We love bananas around here!

    We do have to give Kenzie zyrtec and albuterol and flovent because her asthma was out of control and she was constantly sick with pneumonia and ear infections… she has been so much healthier this year since I started using the prescriptions (we had previously tried to go without). It’s been a HUGE difference in her breathing and illness.

    I get so frustrated with Docs just saying “here’s some drugs” and sending me off! Our allergist appointment made me so angry!!!!

    Hopefully Fiala will do better now that you have some answers though!

    • Yeah, we have similar love-hate relationships with meds. Wesley will be 8 in September, and he still has unidentified allergies. For five months (Dec – April), we had him on Singulair, which 98% improved his breathing issues, which worsen in colder months. It was lovely not to have to worry about his breathing as he slept and played. However, we have GREAT reservations on keeping him on long-term meds, even non-steroid ones. He also takes Benedryl about 3x/week, but for me, that’s still too much. If I find an allergist that I can really trust, I’ll bring Wes to him/her as well, because I want him to be able to BREATHE and not have eczema on his legs, but with less medication.

  6. I’m totally with you on that talking out of two sides of his mouth thing – BTDT!!! ugh. but really, I think it’s likely he has NO idea how to diagnose or treat naturally… it’s not that he doesn’t care that you do. he just wouldn’t know how.

    secondly, thank God she has a mother like you who isn’t going to take some docs advice and instantly put her on 7 different medications!! my word! that is a whole heck of a lot of stuff for a tiny little girl’s system! her body is clearing saying “something is not right!” and he is clearly saying ” take this to cover up the symptoms b/c I haven’t a clue what the problem is”. which of course is a great for short term (and sometimes neccesary when things get really bad) but never a long term solution. I think your strategy makes a lot of sense.

    thirdly, have you considered seeing a holistic doctor? they’d be more likely to treat things naturally and holistically (obviously) than a medical doctor.

    I do so hope you and your girl find relief with some of these treatments! and good for you for putting SO much work into it for you. sounds like she has a pretty awesome mama too me! 🙂

  7. Laura ~ Up to now, we have avoided any naturopath (or similar), for two reasons. One is that we have to pay out-of-pocket, which can be super pricey. Two, is that a naturopath that a number of friends of ours have seen is — IMO — a whack-job who insists that all her patients “need” to do the Marshall Protocol, which is not only nonsense, but dangerous. So, that decreases our trust (esp my husband’s) in such doctors. However, she’s not the only naturopath in the world… AND, since we now have to pay $50 copay for specialists, it makes a naturopath’s fees seem more reasonable. I’m looking into other naturopaths here, locally. We may go that route.

    Thank you for your encouragement!!!!

  8. Karen – It is frustrating finding a good allergist. Abigail had negative skin pricks and even an inconclusive RAST test (to milk) yet we know her eczema disappears when milk is excluded! From my understanding, skin pricks are very unreliable in infants. The trick is to find an allergist who is also an immunologist. I found mine by a referral from our GI. Whenever a GI can work with an allergist, that is a good sign! That means the allergist understands food intolerances, T-cell mediated reactions, delayed responses, eosinophic reactions,etc. that GIs generally recognize. Our allergist now has been extremely helpful…she patch tested Abigail, but I will tell you that that is a very subjective science…much of it still comes down to food trials. She was positive to 4 foods but the positives have a graded system – she turned out weakly positive – so we still have to trial them. She turned out negative to milk on the patch test, but 50% of kids with eosinophilic reactions to milk test negative… so you can see what I mean about patch testing. What I liked about her was that she gave me a clear plan to trial and introduce…with guidelines for what reactions were okay to “push through” and when to stop.

    You might try asking around in your area for the name of a good pediatric GI, and then asking them what allergists they generally refer to. Both of our docs ended up coming from TX Children’s hospital, so you might look at your closest pediatric hospital for names.

    • Thank you, Jill.

      Yes, one of the reasons I just switched Drs within the practice is that he is apparently more willing to work with the parents to go the route of treatment that they’d prefer, quicker to do patch testing, etc. The doctor that we DID see is actually a pediatric allergist AND immunologist. But, I think he’s just stuck in “old school” thinking. As part of the Yahoo Phoenix Allergy Network group I’m on, one of the moms told me what that same doc had told her for her daughter 16 years ago (she pulled out the notes!!!! She had saved them from that long ago!!!), and it was almost verbatim what he told me for Fiala. I think maybe he’s just not keeping up with the new and changing information that’s out there regarding allergies and intolerances.

      I will ask him about a pediatric GI doc; I know a couple are recommended via the Yahoo Celiac Group I’m also in. You’re right — all of them are associated with Phoenix Children’s, and that is almost an hour’s drive from my house. Ugh. I hate to put a price tag on Fiala’s health, but with $50 copay and $10/hr babysitting, I’m trying to keep her treatment as close to home as possible. ~sigh~

      Do you have a good website to recommend that breaks down all the terms of the various kinds of allergic reactions? I know there are the different kind of blood responses based on the type of allergy, but it’s been a while since I looked all of that up. All of the terms you referred to ring a bell, but I think I need to up my education, so I know exactly what to ask for, and so that I know what the doctor is talking about.

  9. This article is mainly GI – BUT it does a great job of helping us understand the terms used by the pediatricians…I think it will be helpful: http://pediatrics.aappublications.org/cgi/content/full/111/6/S2/1609

    It is probably too late this time if you already started the Keflex, but if Fiala’s skin infection comes back, I have used Manuka honey on my 4 y/o’s impetigo (staph infection) on her face in place of antibiotics. It is extremely effective even on MRSA infections. You can use the honey straight 3-4 times a day, or if you are worried that she might get some in her mouth, they make a special tube of medical grade (with bot. spores killed) that you can order off the internet. I just used the regular Manuka found in Whole Foods.

    • OOOOOOH!!! I’d forgotten about treating impetigo with honey!!! I read something about that a year ago or so, and sent the info to a diebetic friend of the family who has unhealing, staph-infected sores that are infected on his foot (which eventually led to the amputation of his big toe). I will MOST certainly do that if the impetigo comes back on Fiala’s face. IF it was impetigo. I’m still not convinced. Her face looks less red than it did a couple of days ago, but the scabs don’t look any better or less “crusty” — I never thought they looked crusty in the first place. However, if I’m ever in doubt about it, I’d so much rather treat it with honey than with a round of abx. But, since I’ve started the abx round this time, I’ll continue with the treatment until its done.

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