Musings of a Marfan Mom

New Specialists

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The past two days have found us meeting with Baby J’s new GI and pulmonologist.

Because our previous GI wouldn’t give us any recommendations for a doctor up here or any guidance whatsoever, I resorted to paging through all the doctors the local children’s hospital had to offer until I found a general GI that “felt right.” My gut told me to go with the doctor who from here on out will be known as Dr. Armisen, as in Fred Armisen, because that’s who he looked exactly like (just maybe 15 years older).

Dr. Armisen looked over all of J’s records and then pronounced two things. 1) Our former doctor was completely wrong in advising us to cut J’s prevacid in half and grind it up. Like, first year med student wrong. Apparently the medication is not evenly dosed throughout the pill. This means that on any given night J could have been receiving no medication, or twice the dose he needed. Awesome. 2) Because most kids outgrow reflux by 10 months, if a child J’s age (almost 14 months) is still having reflux, especially since he’s on the max dose of medication for his age/size, then a doctor should be looking for another cause. Dr. Armisen thinks that J has a dairy allergy.

Now, I agree with his conclusion but disagree with how he arrived at it. In kids with Marfan, the tissue that keeps food in the stomach is most likely going to take longer to strengthen than it does in kids without a connective tissue disorder, because floppy tissue is a hallmark of the syndrome. So, I don’t think it’s reasonable to say that because a child with Marfan has continued reflux at 14 months, it must be caused by something else. Also, Dr. Armisen said something about the stomach not emptying properly due to inflammation caused by an allergy, and that’s why reflux occurs, but I’m 95% certain our former GI said that Baby J’s stomach *is* emptying properly.

That said, I first suspected J had a problem with dairy when he was 4 months old and I noticed some blood and mucus in his stool. I asked the pediatrician and she told me it was normal. There have been blood and mucus in his stool off and on since then. He’s also had major problems with constipation (may Teenage J forgive me someday for writing that) since he was about 6 months, even before we introduced solids. That’s not common for a breastfed baby. There have been some minor eczema episodes as well (though all 4 of us have eczema). I really should have stopped dairy for awhile months ago, but I wanted to believe that the doctors were right. (And they may still be right, and I hope that is the case, but the allergy route is definitely one that is worth exploring based on his symptoms.)

We go back to the GI next Tuesday. I’m not sure we’ll be able to detect results by then, but we’ll see. I’m game for giving it a few more weeks and if there is real improvement then I’ll be dairy free till he weans. It’s actually not terrible – except that I miss cheese and CHOCOLATE – and maybe it’ll help me kick those last 5 lbs of baby weight. 😉

All in all, pretty happy with this new doctor! I was going to write about the pulmonologist tonight too but J has already been up once so I’m worried it may be a long night…better catch the sleep where I can!

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