Healthcare + Baby: 6 Things I’ve Learned

by Kim on October 26, 2012

So here’s the update on Mason’s food allergy situation.

027 Brace yourselves guys-it ain’t pretty

(Quick back story: we’ve known for awhile now that he’s allergic to cow’s milk, and he’s still breastfeeding, so I’ve been cutting all dairy out of my diet. But when he was still showing allergic symptoms post-dairy-removal, including some random outbreaks of hives, our pediatrician referred us to an allergist.)

The latest: in a blood test for about 20 different food allergens, only a few of them came back negative. A few! Which means that he’s allergic to a massive list of foods, including:

– Milk (which we knew, but more specifically, we now know that he’s allergic to every single milk protein, like casein and whey, to a different degree)

– Eggs (white AND yolk)

– Peanuts

– Soy

– Wheat (funny considering the allergist’s comment at our visit)

– Tree nuts (cashews, almonds, etc.)

– Legumes (peas, beans, etc.)

The news was heartbreaking to me. Not only because of what this now means for my diet, but also because of the scary questions it raises, like:

– Will he be allergic to any of these things forever? If so, how severely?

– Did I somehow cause this? Did I do something wrong when I was pregnant?

– What ELSE could he be allergic to?

And then there’s the guilt of taking so long to figure this out. When I think back to the Mason of 3 months ago, who would spit up half his meal at every feeding and arch his back in discomfort, it hurts my heart to think that it was all just because I was eating things with milk in them. Also, we always wondered why he had such bad sleep habits-poor sleep patterns are one of the top symptoms of food allergies.

But somehow, he was always gaining weight just fine…I mean, right??

013 case in point: chunky leg boy

So what does all this mean? Well, for now, I’ve stopped eating milk, eggs, peanuts, and tree nuts, which are the top offenders. In a scale of 0-100, his reaction levels for these were “greater than or equal to 100,” meaning they were essentially too high to even measure-they could have been 300 for all we know (or so the allergist told me). The allergist also said they don’t even think about reintroducing a food until the levels get down to 2 or below, so basically, he won’t be trying a PBJ sandwich ANYTIME soon.

This whole experience has already taught me a lot about what it means to be responsible for someone else’s health. These are the top 6 lessons I’ve learned so far-many of them I’d heard before, but I’d never actually truly LEARNED them until now.

1. Even first-time moms have trustworthy intuition

You always hear the “trust your intuition” thing, but as a first-timer, my intuition fires off false alarms every time he coughs twice in a row, so why would I trust it??

When it’s your first kid, how are you supposed to know what “normal” is? It helps that my friends have babies, so we can compare notes, but then you run into the “every baby is different!” disclaimer, and it gets tricky separating Normal Different from Concerning Different.

But I’ve learned that even first-time moms have intuitions worth trusting. I knew something was wrong, despite all kinds of reassurance from our pediatrician that “all babies spit up.”

2. Take notes

I always wished the pediatrician could assess my baby’s health just by examining him, without me saying a word, but the truth is that your story of what’s going on with your baby is 10x more important than anything else. Things like behaviors and patterns are extra important in baby healthcare (because they can’t just tell you what’s up), and only you know when something is out of the ordinary for your baby.

So if you have a crappy memory like me, you’re going to need a little more than just your brain to answer some of the super-specific questions your pediatrician will come up with. Now, I have a Word document on my computer where I store dated notes about anything unusual I notice about M’s health or behavior.

thinking Was that Tuesday or Wednesday his poop was bright green?

Besides just making it easier to answer questions, it’s much, much easier to make a point when you have actual data to back it up. So when I said “he spits up a lot,” it was pretty meaningless, but if I would have documented exactly how many times a day and how much he was spitting up, I have a feeling we could have gotten to the bottom of this much sooner.

3. Doctors can be wrong

This is still hard for me to swallow, but doctors are human, too. Their solutions and diagnoses are never anything more than their best guesses or the results of a followed protocol.

As a society, we seem to have a bit of a God Complex going on with our doctors, but they’re not, in fact, all-knowing. The human body is extremely complicated, and we have to appreciate that. Thinking “well, she’s the doctor!” just isn’t good enough.

doctor god *Not* what actually happens

So it’s our responsibility to actually help our doctors come to the right conclusions. We’re also responsible for checking their work, doing our own research, and getting second opinions.

4. Not all doctors are created equal

When I asked our allergist if Mason would outgrow his allergies, she shrugged and said, “maybe some of them, but peanut allergies are usually lifelong.” While I sat there feeling like I’d just been punched in the face, she wrapped up her talk and quickly left the room.

Then, she randomly returned 15 minutes later to say, “you know, I think I’ll give you an EpiPen.” Another blow to the face. To me, her actions said “your child could potentially go into anaphylactic shock at any moment” while her attitude said, “this is so trivial I almost forgot about it.”

Before the end of our appointment, she promised to call the following week to discuss the blood test results. Apparently, she forgot that she was going to be on vacation all week, so there was no call.

Now, I know I just said that doctors are only human, and I’m sure our allergist was well-intentioned. But if you don’t feel comfortable with and well-supported by your doctor, you can (and probably should) look for a new one. I am.

5. Sometimes, you have to be pushy

I hate being pushy. Hate, hate, hate it. I can tell when I’m annoying people and they’d like me to just shut up and go away. And in most cases, whatever we’re talking about is not important enough for me to keep pushing.

But when it comes to your kid (and probably some other situations, but I’m starting small), you just have to suck it up and be annoying.

pushy

When I told our pediatrician that Mason was having diarrhea up to 6 times a day, she laughed and said, “guess he’s not constipated!” Then, when I said that I was actually getting concerned about it, she assured me that breastfed babies often had what “looked like” diarrhea.

If you’re not comfortable with where the conversation ends, you probably haven’t pushed hard enough.

6. You are in charge

When I talked to the allergist (our original allergist’s backup, that is, who I called when I found out the other one was on vacation), he basically recommended that I quit breastfeeding and switch to this super hypoallergenic, super expensive formula. When I said I wanted to keep breastfeeding, I got the impression that he was disappointed-maybe because he doubted that I could do it right. (Little does he know I do a MAD food-label-read these days.)

Sometimes it’s hard to remember that doctors’ advice is still just advice. You are always the final decision-maker. (The same goes for things like immunizations and flu shots, of course.)

 

Mommas out there: what have you learned about managing your child’s healthcare decisions? Any advice for me??

Non-mommas: of course, all of these points could be applied to non-baby healthcare, too. Any stories or advice you can share?

 

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{ 8 comments… read them below or add one }

Jennifer Wendt October 26, 2012 at 9:14 pm

Hi Kim! First off let me tell you how much I am enjoying your blog, especially your candor and honesty in sharing the fullness of the new motherhood experience. Your openness about the “less than perfect stuff” – e.g. the uncertainty of life with allergies – will really help other moms who out of fear and insecurity feel all alone among their seemingly-perfect less-sharing peers. Next I want to commend you for following your instincts. You know your baby more than anyone; you are an expert on your baby. The advocacy that you have demonstrated in taking the lead in finding answers will be the safety net your son can rely upon all throughout his life.
Although we have not had the experience of conforming our life to fit the requirements of a young’un with food allergies (tested positive for a couple things that never really were a problem) we have had the fun of making sense of life with children with moderate to (at times) severe environmental allergies, which at times have led to hospital visits and the inability to visit certain people’s houses. After minimizing exposure, allergy treatments and medicines, and of course a healthy diet, it is nice to say that the kids have experienced a great reduction in severity and frequency of symptoms. Should the credit be given to treatments or growing out of the allergies? Who knows? I’m sure both played a part.
Zach (your hubby’s cousin) has had a lifetime of allergy to milk and corn (as well as some environmental stuff too). Even though he started out being unable to tolerate even a tiny amount of the offending substance without becoming ill, removing the allergens from his diet along with treatments have made his symptoms manageable enough to “cheat” without too many consequences, so again treatment and time has made a difference. There is hope!
Just to take a quick minute to address the milk protein issue. The protein content in breast milk, even with the 60/40 percentage breakdown, is many times lower than that of cow’s milk due to the fact that human infants are meant to develop more slowly than baby cows. In other words the 60/40 percent is the breakdown of the 5 percent (?) total protein content of the milk (compared to upwards to 20 percent for cow’s milk). Additionally the human milk proteins, in spite of having a make-up comparable to cow proteins, are different, and as we all know perfectly suited to a human baby. It is also important to note that these proteins are accompanied by enzymes that aid in the digestion of the milk proteins in the milk itself further increasing the baby’s digestion. It IS possible to have a baby allergic to mother’s milk but seeing as this requires an allergy to proteins in general is fortunately very rare.
Keep up the good work!
-Jennifer

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Kim October 27, 2012 at 1:46 pm

Hi Jennifer! Thanks for the support, and for clearing up the confusion about protein in breastmilk! That makes sense.

I REALLY hope he’ll grow out of at least some of these allergies…

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Lindsey October 26, 2012 at 3:03 pm

When I first googled something about proteins in breastmilk, this site http://www.americanpregnancy.org/firstyearoflife/whatsinbreastmilk.html, said… “Human milk contains two types of proteins: whey and casein. Approximately 60% is whey, while 40% is casein.” Funny right? But then it said something about breastmilk still being the most hypoallergenic thing you can feed your baby, even when allergic to milk proteins (that coming from a Mayo Clinic source.) Confusing! hehe.

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Kim October 26, 2012 at 3:17 pm

Ha, I don’t get it! Maybe human whey is different than cow whey. :)

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Erin Gilbertson October 26, 2012 at 1:49 pm

Kim, I checked out your blog because you asked me to “like” it on Facebook and I’ve only read this one entry so far but I have to tell you, I really like it! As you said, this entry is applicable to people who don’t have kids (like me) as well. I’m going through the exact same learning process dealing with doctors about my own health right now, especially the parts about being pushy and remembering that ultimately, I make my own decisions. And realizing that they can be wrong! That’s a scary thought sometimes.
I’ll be back :)

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Kim October 26, 2012 at 1:56 pm

Hey Erin! Thanks for stopping by. :) Yeah, it was definitely scary when I realized that doctors aren’t perfect, but I guess it’s weird that we ever even think they could be!

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Lindsey October 26, 2012 at 1:46 pm

Wow, that is a lot of complexity to deal with in addition to everything else as a first time mom! I have been surprised myself at some of the intuition moms can have without really having extensive experience. Question related to your post: how are babies allergic to lots of milk proteins but not breastmilk? Can they be allergic to that too? (I will google this after submitting the comment, hehe)

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Kim October 26, 2012 at 1:53 pm

That’s a GREAT question, and you should let me know what you find out after googling it because I don’t have a clue! :)

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