Musings of a Marfan Mom

When Doctors Mess Up

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Also known as: the story of my life.

You know that back in July, Baby J went through a barrage of testing to find out why he’s had diarrhea off and on since the beginning of March. It was found that he has low IgA, so we made an appointment with an immunologist for after conference (where, unrelatedly, J got a virus that aggravated his asthma to the point of needing an inhaler for a week, and then it took another 2 weeks for the virus to clear up) to see if J had an immune deficiency disease.

I was so sure that this was going to be the answer to what was going on with him, but the immunologist came in and explained that his IgA was not low enough to be considered for an immune disease diagnosis. She tried to tell me that J probably just had “toddlers’ diarrhea,” which really got me frustrated. Yes, I think this is a legitimate diagnosis, but not in this case, and I feel like too often doctors toss it around when they don’t know or don’t care to take the time to find out what is going on. I asked her tersely if toddlers’ diarrhea causes children to become malnourished, or if it causes children to quit producing urine, and of course she said no to both questions.

After the skin allergy testing she ordered was negative, the immunologist agreed to take one last look at J’s test results from 6 weeks prior. This is when she mentioned there were eosinophils in J’s stool. These are cells that signal an allergic reaction. She said he might have eosinophilic colitis and I should ask his GI about a colonoscopy. That was a Friday.

On Monday, I left a message for the pediatrician asking if this was true. I mean, three other doctors had said they’d reviewed J’s test results and assured me everything but the IgA was normal, so the immunologist must have been confused, right? Just in case though, I called the GI’s office and made an appointment for the next morning.

That evening the pediatrician called me back. He told me that only were there eosinophils in the stool, but that J had tested positive for a parasite! I was so livid I was shaking. Because none of the doctors could read his results correctly (or, I think, that 2 of them didn’t bother to read them and just went with what the first doctor said), J had had an unnecessary endoscopy and had been living with this for so long that he’d become malnourished!

The GI appointment went abysmally the next day. The doctor was too busy meeting with drug reps to be on time for his appointments, and he was so late for ours I had only 5 minutes before I had to dash home to meet M off the school bus. The doctor could not understand why I was angry and did not want to entertain any sort of new treatment plan, whereas I was not willing to give J a third round of the same high-powered antibiotic that had obviously not helped. I ended up calling the pediatrician to get the name of the medication that Infectious Disease had recommended.

Then, I had to track down this medication. The pediatrician’s office called the next day to tell me the medication was out of stock and I should just go forward with whatever the GI wanted. Thanks to my friend Danielle though, I knew there were other options. I called the hospital pharmacy myself (the same hospital that our pediatrician and GI are affiliated with, naturally) and they were able to get the medication for me! It came in last night.

Hopefully this medication works and it was indeed the parasite causing the problem and J feels better and starts eating real meals and absorbs nutrients again and everything is happy. Because this is a parasite sometimes found in normal gut flora, there is a small chance that J is having an allergic reaction to something instead of the parasite causing the eosinophils, but we’re not going to entertain that thought right now! After follow-up testing next week, we’re going to find him another GI. There have just been too many issues over the past few months for me to ignore them any longer. I’m on the fence about whether to find another pediatrician…this wasn’t the first issue with him, either (and then I found out he sat on paperwork for J’s nutrition supplements for 3 weeks, which made me even MORE happy).

Please cross your fingers for us that this medicine works!

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6 Comments

  1. URGH I feel your pain. I sometimes wonder why doctors order tests that no one looks at or follows up with. I hope the medicine works and J feels better soon.

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  2. Fingers and toes crossed! You must be ready to spit nails – such a frustrating and unnecessary situation. Why do some docs think they are above it all? Hope this works for Baby J (can I still call him that lol) and he finally starts to feel well. Hugs

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    marfmom Reply:

    Haha yes, you can still call him that! Wish I had a better nickname for him than just his initial though!

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  3. Unfortunately, I can relate. I vote “new pediatrician.” Hey, you can always come back if you can’t find someone better. I cheat on my doctor sometimes. He doesn’t need to know.

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  4. Ugh Grr This is not good. Poor J.Sending Hugs your way :)

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  5. Your child has special needs are deserves a doctor willing to take a little extra time to read a test result. If just wants easy-peasy cases, might e time to look elsewhere. Doctor shopping is exhausting and expensive. I have to pace myself.

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