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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14 Comments

  1. Glad you are liking your new GI! If cutting out the dairy thing doesn’t seem to help, you might look into getting him tested for celiac or a gluten intolerance, since the symptoms are very similar to dairy issues (constipation, excema, etc.). I had a friend who’s baby had celiac and she had to go gluten free while she was breast feeding. Hard! Any way, here’s hoping that it’s dairy, and that this takes care of it!

    Thanks again for your advice on the SVT stuff!

    [Reply]

    marfmom Reply:

    He’s due for his celiac testing! We wanted to wait till he’d been on gluten for awhile, so that’ll be the first thing we do with our new pediatrician (who I’m interviewing next week). The Menininho needs his yearly test too. Because of Mark, both boys will be tested once a year till 18 or till they test positive. I *really* hope it’s not celiac!

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  2. My little guy is milk intolerant, which is common in Asian families. He really improved when I stopped dairy, though I can usually have a little every once in a while.

    Oh, I miss yogurt, cheese, cream in my coffee, latte…though I’ve switched to soy.

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    marfmom Reply:

    How similar does soy taste when you sub it? I bought some soy milk but haven’t tried it yet. I was thinking of making soy and fruit smoothies for breakfast and then baking it in pancakes and such too.

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  3. Wow, that’s impressive that you’re at 14 months and still going strong! I made it 3 with Chaela and 8 with Joci. I’m aiming for 12 with #3.

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    marfmom Reply:

    Thanks! My goal was 12 months but I think we’ll end up going awhile longer, mostly because J is still not super into solids. He’s really only started eating table food in the last few weeks and what he does eat is still pretty selective. My big goal for the next month or so is to get him to night wean. Good luck with your goal! You can do it! :-)

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  4. Lee has always had a problem with constipation (I am allowed to say that because of his evil teenage ways). He was breastfed until about age 2. I wonder about reflux with him. The doctor at one point said that he thought he had it. Lee sometimes goes through these periods where he will vomit for a couple of days. This has been going on for 6 yrs now. The emergency doc (paranoid mother right to the emergency room) said he had gastritis. It hasn’t happened in a while but I still wonder at the actual cause.

    [Reply]

    marfmom Reply:

    There’s got to be some sort of link I think. I go through periods of being nauseous for days and I know of at least 2 other Marfs who have gone through something similar. Senior year of college I had a whole year of it but no one could quite pinpoint the cause and then it went away for awhile.

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  5. We have 3 dairy sensitive people in our family of 5. I highly recommend coconut milk. It has healthy fats and almost the same calorie count as cows milk. Little brother drinks coconut milk, big brother prefers almond milk and dad prefers rice milk. Lol grocery shopping is fun;) oh, and some people that are dairy sensitive do ok with goats milk, or fresh, raw milk. Not sure if you want to go there though.

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    marfmom Reply:

    thanks! is it even substituting coconut milk for cow’s milk?

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  6. I went dairy and soy free while nursing my son – my salvation during that time was Trader Joe’s dark chocolate. They have some that is both dairy and soy free, and SO delicious. I almost cried when I found it.

    Almond milk is also fantastic, if you don’t like soy.

    [Reply]

    marfmom Reply:

    thank you!!!! i’m definitely getting some of that chocolate next time we go to trader joe’s then!

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  7. I can’t seem to make the reply button work.

    It’s not the same. It’s okay with other strong flavors like coffee…it would probably be okay in a smoothie. I don’t know about the pancakes. I can usually eat pancakes, every once in a while.

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  8. I use soy and rice milk to make pancakes and fry bread, I add a dash of vanilla extract a d you can’t even taste the milks! Coconut milk is amazing in smoothies.

    And you can get coconut, almond, or soy based yogurts. :)

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