Musings of a Marfan Mom

The Mystery Continues


As I write this, we finished up day 13 of continuous diarrhea. All the blood work has come back normal EXCEPT that Baby J has low IgA levels. This probably invalidates his celiac test. We find out more from the GI today.

Friday’s visit with the pediatrician (whom I generally like) was a little uncomfortable. I mentioned (when asked) that I felt a little frustrated that our GI hadn’t ordered any other testing up till this point. The pediatrician launched into the whole “well, he’s been doing this a long time so you need to trust him” spiel that I haaaaate. I like the GI fine, but I don’t care how long someone has been practicing medicine: it does not make them infallible and I will ALWAYS question doctors. All I want is an explanation for why they are making their recommendation/decision, and to feel like I (and my children) have been heard. At the end of the visit the pediatrician basically said he will not order any more tests on J. Whatever the GI decides, goes. So, I guess if I don’t like what the GI says I will need to get a new doctor. Blah.

Saturday J and I ended up in the ER. He was cranky, had had 5 diarrhea diapers that day, and no real wet diapers in about 36 hours. The pediatrician said to stay out of the ER J should have at least one wet diaper a day and no more than 2-3 diarrhea diapers in a day.

Of course as soon as we got to the hospital, J turned on the charm! His energy came back and he flirted with the nurses. A police officer even accidentally walked into a trashcan because he was too busy making faces at Baby J, hahaha. This was also the fasted I’ve ever been seen in an ER…I don’t think it was more than 10 minutes between when we arrived and when we were in a room, talking with the resident.

Now, the resident was really friendly, don’t get me wrong. But the first thing she said was “Hi! I was stalking your son’s chart while you were in the waiting room because he’s such an interesting case!”

Moms (and dads): Am I the only one who feels uncomfortable with statements like this? On the one hand, a doctor that sees my child (or me) as interesting is probably more likely to invest time in figuring out what’s wrong. On the other hand, that statement shows me the doctor sees my child as a case first, child second, and I don’t like that.

The other odd thing was my first interaction with the nurse. She asked me what I thought was wrong with J, which I recognized from graduate school as a question to suss out cultural beliefs and to try to get more clinical information…something the parent may have forgotten to tell the doctor. I explained I felt like he probably had celiac disease, given his symptoms and the timing of when they started compared to his bout with RSV.

“Well. Sounds like somebody knows how to Google,” she responded. This time, at least, I had a retort. “Actually, no. I just happen to know how the disease process works since my husband has celiac and his doctor explained it to us.” I wish I’d also added that I may not be a nurse but I’m still a public health professional and know how to access information. Plus, so what if I did Google? There is nothing wrong with that!

The rest of our ONLY TWO HOURS there was as nice as a trip to the ER can be, honestly. The attending was great. The test results came back quickly. Discharge was fast. Although Baby J had problematic symptoms, his blood work showed that his kidney function was normal and he had enough electrolytes, so there was no reason for an IV.

Please cross your fingers that we get direction for next steps today!

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  1. Ugh J. probaley needs the biobsy to see if he has celiac due to that deficenfy.How annoying.Ugh what is wrong with googling? Duh, you know the celiac syptoms your husband has it. ER docs


    marfmom Reply:

    A biopsy is coming soon!


  2. I don’t believe I would have been upset with the resident’s comment. I would be more pleased that she’d read his history closely and picked up on anything/everything unusual. SOunds like she is at least trying to be thorough.


  3. I know how you feel about the resident’s comments. About two minutes after an OB told us I was in labour a whole trimester early, he got that giddy look on his face because I had Marfan and he wanted to know what “tricks” I could do with my loose limbs. Given the perilous situation my babies were in, the resident was so horrified she actually apologized for her boss afterwards.
    I usually don’t mind the curiousity, and I definitely never shy away from being a learning case because there are so few of us. But when it comes to my children I want people to be interested in them and not just their cool case history.
    And the whole “google” thing, I hate. I have gotten it a few times myself. The thing many medical “experts” don’t get is that as the parent YOU are the expert and you have every right to ask questions and research. The only times I have regretted something medically have been when we placed blind faith into someone and didn’t ask the right questions. It’s a hard lesson to learn. But a good one.
    Hang in there.


    marfmom Reply:

    Yikes! That’s a doctor with noooooo bedside manner!

    And I agree: I have no problem with med students, residents and other doctors coming in to learn from J and myself. I only ask that we be treated like people first, rare genetic disorder second.


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