Musings of a Marfan Mom

An Update


The GI opted to schedule Baby J for an endoscopy to rule out celiac and some other issues. He also ran genetic testing to see if J has the markers for celiac. Finally, we got a referral to an immunologist. One of J’s immunoglobulin levels were low (IgA) and although the pediatrician said it was no big deal, I was worried and posted about it on Facebook hoping someone could give me more info. A friend of Mark’s responded to me and it turns out his girlfriend is basically an expert on primary immune deficiency diseases. She was SO kind to answer every question I could think up and without her help we wouldn’t have gotten a referral to immunology, I’m sure. I feel like this is probably the answer to Baby J’s digestive issues. Our appointment isn’t for another month though.

We had the endoscopy on Monday. I will totally write more about it but today has been way busier than I’d anticipated and I’m exhausted. Plus, we have an early morning appointment to tour a developmental preschool that J is on the waitlist for. So, I’ll update this tomorrow!

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  1. Good Luck J. !
    I hope all goes well. If he is diognosed with celiac I can give you some GF kid friendly foo recondmations.


  2. Your continuous diligence and support for your children is a reminder to all of us that we cannot sit around and wait for a doctor who cannot be bothered to explore all options and pathways. Keep up the great work – and reminders to the rest of us to do the same!


  3. Just wondering if you ever got to the bottom of everything? My sons sounds very much the same and we are struggling too – let me know,


    marfmom Reply:

    Nope! After the latest round of antibiotic (flagyl, which is supposed to be the best med for handling bacterial imbalances) he’s looking better but then still having some diarrhea. We’re waiting to hear if his local GI is going to order a flexible sigmoidoscopy to check for inflammation, which would signal an allergy.

    Does your son have a connective tissue disorder? If so, which?


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