Mystery Diagnosis

Mira was supposed to be my “biologically strong” child. Cordy inherited my pale, sensitive skin. Along with autism, she also has a sensitivity to artificial food dyes, has to have her clothing in natural fibers and washed in dye-free, perfume-free detergent, requires fragrance-free lotions, burns if the sun even comes near her skin and easily develops a rash. Mira, on the other hand, is neurotypical and inherited Aaron’s ability to never burn, but rather just develop an even, glowing tan as the summer progresses. She also seemed to have an iron stomach as a toddler, eating nearly anything with a preference for spicy food.

So when Mira started to develop a few strange symptoms last year, I tried to pass them off as nothing. A bit of a rash here and there, occasional bad stomach aches and other digestive issues that I won’t embarrass her future teenage self by writing here. Then she had stomach aches that switched into vomiting, followed by days of practically no appetite. And the rashes continued, to the point of bleeding at times. All of these symptoms lasted a short time and then wouldn’t appear for weeks.

In recent months, the rashes and stomach aches have continued. (She doesn’t have them all the time – they continue to come and go in patterns of days to weeks at a time.) I had hoped they might just go away permanently with a gentle diet and plenty of lotion for sensitive skin, but nothing has helped. Then last week, a new symptom appeared: scaly patches of eczema all over her scalp. I couldn’t ignore it any longer: it was time to see the doctor.

Do you know how hard it is to explain to the doctor why you’re there when you have about 10 semi-related symptoms that aren’t very serious when considered alone but when put together make Google tell you she could have some terrible disease? And even worse when you’re a nurse and don’t even need Google to tell you some of the life-altering conditions that could be diagnosed from these symptoms. I tried to calmly explain it all to the doctor, but even she seemed puzzled by the combination.

The doctor is leaning towards a diagnosis of an allergy, but we have no idea what it could be. Environmental? Food? Who knows at this point. She ordered a prescription steroid solution to help with the eczema and sent us right across the street to the Nationwide Children’s Hospital lab to get blood for an allergy panel. With this many symptoms, it was decided to skip straight to the blood test and avoid elimination diets and skin tests.

Mira was amazingly cheerful through all of this. She told the doctor all about her issues, acting like it was no big deal. She’s lived with many of these issues (off and on) for nearly a quarter of her life, so I’d imagine it is an everyday thing to her.

Getting blood drawn, however, changed her demeanor entirely. I was honest with her about what would happen and she became very nervous as we sat in the waiting room of the lab. She asked if it would hurt, and I told her it would, like a shot does, but only for a moment. Mira has been very brave with shots, so I hoped she’d be OK with this, too.

She wasn’t OK with it. As the med tech looked at her arms to find a good vein, she started to get upset and cry. She held still when the needle went in, but sadly the tech missed and spent WAY too long (in my opinion as a nurse) digging in her arm looking for that vein, which I’m sure hurt a LOT. At that point Mira was no longer brave and just wanted away from that place as fast as possible. Even when the needle was removed she continued to cry hard.

So when she realized they had to do it again (phlebotomy is an art, sadly, and you don’t always get it on the first try), no amount of stickers, suckers, toys or ponies could persuade Mira to go along with this plan. She cried “Not again!” over and over and tried to get off of my lap to run away. I felt horrible. Holding her down for another needle to hurt her made me feel like I was betraying her trust.

They brought in an IV nurse for the second try, and even though Mira was crying, screaming and not nearly as still as before, she got it on the first try and it was all over quickly. It took Mira several minutes to calm down, and Mira and I both felt traumatized as we left the building.

We’ll have the results of her allergy test by the end of the week, and then will decide where to go next, or how we’ll have to alter our lives if she does have an allergy to something we’re exposed to daily.

However, I can tell you there’s nothing wrong with Mira’s memory. She remembered she was promised a sticker. And when we got home she remembered I promised her fruit snacks. And a sucker.

The only reason she’s smiling is because she has a sucker in her hand.

She also brought up the bribe of a toy, too. We’re still negotiating that one.

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Comments

  1. Oh gosh, I know exactly what you mean about feeling like you betrayed her trust. When my boys were getting their baby shots the doctors always wanted me to hold them down and I replied, “NO WAY. YOU be the ‘bad guy’.”

    I’m sorry that you guys are having to search for answers on this, but hope that you get a solution quickly. xo

  2. Melisa – no kidding, and just think if this results in allergy shots or something. They’ll probably say, “Oh, you’re a nurse, so you can give her the shots regularly.” Uh, NO WAY!

    Amy – Hi, thanks for commenting! They are checking her for any food sensitivity under the sun, including wheat gluten, dairy, eggs, soy, etc. If the blood test comes back negative or inconclusive, she’ll probably be referred on to a specialist for further testing. Celiac crossed my mind, too!

  3. I’ve been reading your blog for over a year, but I’ve never commented. (I love your writing!) Mira’s symptoms sound familiar to me – I hope they’re checking her for celiac. It would explain both the rash and the digestive problems. I hope they get to the bottom of this soon!

  4. MN RN Mom says:

    Oh can I relate! N has had a food allergy for years, as well as several other inherited ones. So we’ve had to go through the shot battles, the blood draw battles and since starting school, the strep test battles. I felt horrible as a new mom having her heel bled for labs routinely her first weeks of birth (jaundice) but that was nothing like the puncture battles now! The screaming, the writhing, the hysterical crying, the “no mommy no!” Been there, hate that. We finally were able to get her allergy tested at a pediatric allergy specialist last fall and she had the dreaded scratch test – she was a trooper for that! Now that she’s a 6 year old with an 8 year old’s body it takes at least 3-4 adults to hold her down for any puncture procedure as I call them. I wish you speedy and definitive results. They do sound like allergy to me too, in addition to celiac, I would also guess possibly multiple allergies which would explain the sporadicness and multiple manifestations. Best of luck!

  5. Rachael Heiner says:

    Ugh, I’m sorry, that is no fun. We had to hold my son down for a blood draw when he was about 2 1/2 and it was awful. I hope you get some clear answers.

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