Musings of a Marfan Mom

A Medical Mystery

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J has been having GI issues since March. It’s been the great mystery around here, and Mark & I are getting pretty weary of it. GI problems are NOT associated with Marfan syndrome (though they are with LDS and EDS, but we have genetically confirmed MFS) so there is something else going on in addition to Marfan.

The first time, the diarrhea lasted for 10 days. That’s when we happened to add in an antibiotic to clear up a sinus infection, which should have made the diarrhea worse but actually cleared it up. After the antibiotic ended, the diarrhea came back. J’s GI doctor ordered 4 days of a very powerful antibiotic then and this time the diarrhea stayed away for a couple of weeks before coming back.

It always comes back…every week or two (we haven’t used any more antibiotics). It is sporadic in how long it sticks around. The GI had declined to do any testing on J, as did his regular pediatrician. They said it didn’t sound consistent with anything they could think of. At the end of June I took Baby J to my allergist, who did the “basic series” of skin tests for food allergies. Those came back normal, so the allergist said it must be a GI issue and punted us back over there.

Yesterday I the baby in for a sick visit because I wanted to rule out a stomach bug for this latest go-round of sick (we’re on day number 6 of diarrhea!). We saw a pediatrician in the practice we hadn’t seen before, and she thought that this was just another manifestation of whatever has been causing issues for the past 3.5 months. I asked about IgG testing and she agreed. She also suggested RAST testing for wheat, soy, and rice, checking for parasites, and testing for crohn’s disease and ulcerative colitis.

3 stool samples and 6 vials of blood later, we’re waiting on results. Some may come as soon as tomorrow, but the rest will take about a week. Please cross your fingers that we get some answers!

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