It’s always a bit frustrating for us when we have to deal with doctors who feel they know Namine better than we do. Imagine how maddening it is, then, when we meet a doctor for the first time and she is convinced that we are doing everything wrong.

Namine has a rash on her hip, and the Special Needs doctor at the hospital has no idea what it could be. In the past, the rash has come and gone, but it has been persistent since the Fontan in August. The rash itself is a deep red, and even though it doesn’t itch consistently, it does hurt from time to time. After our most recent call to Special Needs, in which I told them that the steroid which had been prescribed was not working, we had an appointment set to see the Dermatology folks. Things only went downhill from there.

Even though we told the doctor the background of this rash — that is, that it comes and goes — she said it was probably a burn. Then she asked us if we let Namine sit on a heating pad (of course not) or let her sit in a hot tub (don’t be ridiculous). With that out of the way, she said it was probably eczema, in spite of the fact that it does not itch and is not flaky.

In addition to the rash, however, there is an added complication: there are red spots on and around the rash. The doctor suspected this to be folliculitis, which is just a scary-sounding word for follicle irritation. (Hint: Namine’s scooting very well may have caused this.) The good news here is that the folliculitis seems to have run its course for the most part and will most likely clear up on its own. For this reason, among others (Namine’s skin is sensitive to begin with, and most topical treatments for folliculitis can be hard on the skin anyway), the doctor did not prescribe anything.

For the supposed eczema, however, she wanted to prescribe something. As she listed topical after topical, we shot down every one of them. Believe it or not, we’ve been taking care of Namine for quite a while. As a result, we have through trial and error discovered what her skin will and will not tolerate. But this doctor, like so many doctors and nurses before her, simply did not believe that Namine could be allergic to so many topicals. Deal with it, lady.

After we left the dermatology clinic, I was leafing through the printout we were given as Jessica drove home. Most of it seemed to be contradictory. It recommends ointments and creams, advising against lotions because they contain alcohol and water as the primary ingredients. But we went to Walgreen’s and closely inspected ingredient lists on every recommended product listed on the printout, and every single one contained both water and alcohol within the first five ingredients, and water was often the first ingredient. So I call b.s. on that one.

But what really made us mad is the recommendation of giving Namine a bleach-water bath. Yes, let’s bathe our daughter in poison.

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The doctor did end up prescribing something that we have not tried on Namine’s skin, but neither my private insurance nor Namine’s state insurance will cover it. In the meantime, we have a small bag of sample creams and ointments from the doctor. We’ve been trying them out on Namine’s arms to check for reactions.

  • Jen, Jeremy & Jacob Schultz

    Yikes! That sounds awful! So sorry that you had to go through that!

  • I hate doctors who think they know everything. You see me (or my kid) for 15-20 minutes every few months and you think you know more about her than I do? Think not! Anyway, hope you found something that works and doesn’t hurt her skin anymore.

  • Interestingly enough, the rash has diminished since we started giving her a shower, instead of a bath. Not sitting in the soapy water seems to have done the trick, at least partially.