Musings of a Marfan Mom

A Medical Mystery

| 14 Comments

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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14 Comments

  1. I hope you get an answer! That would be so frustrating. I a little like Lee’s vomiting issues except that he is not continual like that.

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  2. I am anxious to learn results. Fingers crossed. Poor J. His poor bottom must really hurt!

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  3. Poor J! Was it the allergy test where they use a million different allergens and scratch their backs? Chaela had to do that and she was so traumatized by it she freaked out for a week if anyone tried to touch her back. Of course, Chaela is also rather easily traumatized. I hope you find an answer soon! There’s nothing worse than watching your kids suffer and not being able to do anything about it.

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    marfmom Reply:

    yep that’s the one! but, he only did like 12, so it was just one bar’s worth. he said there was no point in testing anything beyond the common allergens because otherwise we’d already know what was causing the allergy. right. was the test at least helpful for chaela?

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    Caitlyn Reply:

    Yeah, we did it to see what could be causing her horrible eczema, and it turns out she’s allergic to eggs. Not very seriously, but enough to make her skin break out in a nasty rash. They tested her for forty different things I think. It was a lot.

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  4. What are LDS and EDS?

    I hope you find some answers soon. It’s so hard when stuff like that happens and you can’t find any answers. :(

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    marfmom Reply:

    LDS is Loeys-Dietz syndrome and EDS is Ehlers-Danlos syndrome. Both are disorders that are “related” to Marfan. I should have written those out, sorry!

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  5. Does he drink or eat cow’s milk? My daughters have had these symptoms in the past too. Allergy tests come back negative for everything. We did stool samples and saliva tests too. Over the past 7 years we have (on our own) figured out that they can’t digest gluten, corn, soy, and dairy. We just figured dairy out this last fall. My oldest daughter had a sinus infection from Aug.-Nov. Three antibiotics later I narrowed the culprit down to dairy. She had been having string cheese about 3 times a week. She hasn’t had any dairy since realizing that was a problem for her. She has been well since. I find it is very hard to get physicians to realize our food is causing a lot of digestive issues. Our allergist said just because she didn’t test positive to any allergens doesn’t mean she isn’t sensitive to those things. Good luck. I hope you get answers soon.

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    marfmom Reply:

    Melody no, he doesn’t. We figured out he had a dairy intolerance back in January and removed all traces of dairy from both his diet and mine. I reintroduced dairy and he does fine getting it through my breastmilk and can handle it as an ingredient in small doses, but can’t eat any actual dairy himself. If it’s an allergy, my guess is soy since we started giving him more of that once we took out dairy and the symptoms didn’t start till 6-8 weeks after we removed the dairy. But, it could also be an autoimmune disease triggered by the RSV he had the month before. Hoping the doctor calls with info today! I’m glad you guys were able to figure out your daughters’ triggers!

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  6. Hi Maya,
    Hope you get some treatable answers for J’s problems. I’m sending good thoughts your way.

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  7. Hi
    I have never read your blog before but after that post I think you may want to get J tested for Celiac Diesese.The prelimanary test is done through blood work.Celiac is an autoimmune disorder and hard to explain.Here’s a good site that explains it http://www.celiaccentral.com

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    marfmom Reply:

    I forgot that one in the list! We did test him for celiac and we’re waiting on the results. My husband has celiac and my money is on that being the culprit here. J had the test in February and it was negative, but that was before the diarrhea began. His GI refused to re-test but I convinced this pediatrician to order it for me.

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  8. Ugh I know doctors are so annoying when it comes to retesting.I have celiac,my mom has celiac,my identical twin sister has celiac and my aint has celiac plus I (and my sister) have Turner’s Syndrome which up the risk. I was tested back in 2001 after my sister’s diagnoses and when my GI symptoms turned up in July 2010(I had been having migraines scince Jan 2009 with no diagnoses) the pediatrian thought there was no reason to test me oh my mom got mad and pushed for it and sure enough postive. Glad the pedatrian would do the test on J

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    marfmom Reply:

    Wow! I can’t believe they wouldn’t retest after such a long time! My husband’s GI doctor told us that the boys should be tested each year until they turn 18, and then it would be less likely that they’d get it. I know many cases of celiac are not genetic but we are pretty sure my husband’s is.

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