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October 01, 2008

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beate

Fantastic post. You guys must have been phenomenal advocates for your kids, considering how much effort it seems to take to break through the standard response formula of medical practitioners.

I teach a class on the politics of reproductive health, and one of the issues we are dealing with is what it takes to challenge the reigning health care paradigm (in this case childbirth). My students tend to assume that new knowledge will magically rise to the top and be implemented without resistance. Stories like yours about contesting expert assessments are really helpful correctives. Very illustrative.

hedra

@beate - cool, I think I'd love your class! I'm so all over challenging the reigning paradigm, childbirth being no exception. :)

It takes a lot of stubborn and a lot of trust in your instincts to keep at it when the doctors tell you 'go home'. There were certainly times that I wondered if I was making it up, if I had some kind of weird Munchhausen thing going on, but then I'd go home and look at my child, and *know* I wasn't just nuts.

It also helped a lot that our family doc (who I mistakenly often call 'pediatrician' since that's his major function for us) trusts me and thinks I know how to think. So he would cheer me on, point me toward other doctors, read all the reports sent back, and cheer me on again - I rapidly outpaced his specific knowledge of the topics I was looking up, but he didn't mind, just asked me to print stuff off for him and his staff.

I also bless both the Allergy/Immunology and Pulm docs - they both took the approach that something was WRONG here, we just didn't know what it was. The Pulmonologist was the intellectually curious type, and it drove her to distraction (I could nearly picture her tearing at her hair) to not know what was going on, to see Mr B's lungs bleed when he was scoped but not know why, just know that wasn't right. She sweated over his growth, diet, and energy levels, which made me not dismiss my concerns over his growth, diet, and energy levels. The lead Allergist said right off that we know only a small fragment of what we need to know about the body's functions, and even if we didn't *find* what was wrong, that didn't mean there was nothing wrong. Just that we were unable to identify it. No ego or arrogance, there.

But imagine if I had only faced the GI doc... or if any of the others had scoffed, made pained expressions, or told me flat-out that there was nothing wrong with my child. The capacity of authorities to undermine confidence is huge.

Granted, I'm one stubborn, fierce, er, something-that-rhymes-with-itch when it comes to my kids. Determined is my middle name. I also got very used to a) showing the doctors that I was a team player (I am NOT a doctor, thanks, and I know it), and b) presenting my concerns but not getting too married to the theory du jour - because so many of my theories were shot down in testing. I didn't get stuck on ME being right, only on finding the problem.

It was strange when we had an answer, though. I was so used to fighting for everything, every step. Took me a few months to adjust to not needing to steel my nerves for another encounter with some medical professional or other, to be stubborn but calm, to remain open to what they said but not let them undermine what I knew, as well. Hard balance to hold, it took a lot of effort. But that's a big part of the advocacy - not being an enemy or making them into one, but not letting myself be undermined, either.

Cathy

You know what? I know a mom who doesn't let her kids have food that has a certain color in it (blue maybe? And purple too, because purple is made from blue?) The kid has some behavior/ADHDish trouble and there would be a particularly bad reaction when a food had certain artificial colors, and now I'm wondering if it could potentially be not tolerating fructose or some other additive - that the artifical color wasn't causal. Also, childhood friends of the family had a boy who was "hyper" in the parlance of the 70's. And I think one of the things that they did for him was to watch out for punch and things like that. I'm not sure if they were looking out for artifical colors or too much sugar, but either way, in the days before ritalin the home remedies for hyperactive boys were less sugar and more caffeine.

Also, I can't help but make some sort of correlation between 20-25% of your doctors had trouble believing the symptoms/your account of the situation and they are trained to troubleshoot this stuff. What does that say for the public at large and how accepting they are of the diagnoses? I guess it also says something about my expectations for doctors and that they are ultimately regular people too.

hedra

Dyes and preservatives can also set off reactions, per UK research. It may have to do with similar systems, though - if it sets off inflammation, that cuts down the ability to absorb fructose, and therefore you get a temporary reaction. Maybe, anyway. Mechanism is being pursued, but results are remarkably the same.

Mr B is allergic to red dye, but he has an IgE allergy - hives as a result. But, food allergy also will set off behavioral reactions, and again, no way to tell if they're due to a similar mechanism, by causing inflammation or reactivity in the gut.

And I agree - doctors are regular people, too. GI docs in particular have a hard go, because so much is unknown, vague, etc., and in the US, they're taught to be suspicious of patients because so many 'fake' their diarrhea (though I wonder how many of the fakers just faked it because the ONE time they didn't have a bad stool was when they were getting the stool test done... btdt, not with faking it, but going 'why the heck did he have to have his one normal stool this year when I was collecting for a stool sample????'). So. Rough to be a GI. I'm still annoyed at that one doc, because she didn't follow diagnostic standards due to her own opinion, when she could have gotten rid of me faster by just checklisting through the diagnostic tests without thinking twice.

As for the general population, so far, nobody I have encountered randomly has brushed me off. More have said, 'wait, I wonder if that might be part of ... hmmm...'

caramama

Good for you, being that advocate. I think it's great your doctor (pediatrician-ish doctor) trusts your judgement. I think that all too often doctors chalk up parents' concerns to being paranoid or not really knowing. But I think the opposite is true. I think that usually parents have a good sense for something wrong and they should keep after the doctors until they can figure it out.

I'm glad you guys were able to figure it out and do what you need to adjust. Good luck figuring the underlying cause out!

becoming-mommy

Wow…now you have me thinking.
We’ve been having problems with Sasha. I know there’s SOMETHING wrong, but I don’t know what. He’s still tracking tall, but the pale loose stools, the dark circles, the screaming…all seem pretty familiar.
And now I’m wondering if my family has that same issue genetically. Some things have happened that have me really thinking.
Just curious, does this come with any skin conditions or an increased incidence of infection?

hedra

Increased incidence of infection is noted in some studies, because the malabsorption stools can also have a protein-losing pattern. Skin infections, upper respiratory, ear, etc. Not the only cause, but definitely a risk when you're losing proteins (IgG, which is used by the body to create antibodies for invaders is lost with the fluid dumping to gut).

Skin conditions - maybe, maybe not. If there's a tendency to scaly rash especially on the arms and legs, it may be Celiac disease (which then causes fructose malabsorption due to the gut damage). But there are conditions underlying the Fructose malabsorption that can also cause skin issues. In our case, the collagen disorder can cause increased splitting of the skin (especially in high-use areas), auto-immune reactions to skin (including hair loss and melanin loss), and odd scarring.

So, they could be related through the underlying condition - such as the collagen disorder, or celiac disease, both of which have genetic components.

Erin T.

"We were told to test fruits one at a time for tolerance. But that was it. (The allergy eyes/dark circles pop up when he's had too much fructose, by the way - they're not allergy, they're intestinal function sign. This is common with people who have fructose malabsorption.)"

hedra, is that the case always, or just what you have found for your kids? My 1 y.o. has had those increasingly since he started on solids. Now they won't go away. Our doc said it was almost certainly environmental allergies (both dh and I started having allergy symptoms as adults). I haven't seen much of a pattern when I was keeping track of solids, but I wasn't paying close attention to his eyes, either.

Thanks for all your posts! They challenge me to parent better and more thoughtfully (which I'm sure is why my ds is wandering around with a full-size broom in his hands. Yup. definitely thoughtful, there. At least he's not trying to press the power button on the computer anymore.)

hedra

@Erin T., the 'allergic shiners' thing CAN definitely be from allergies. However, the mechanism is poorly understood (at least, last I heard from the allergists), and probably has to do with inflammatory processes. Allergies (environmental or whatever) can definitely cause the dark circles. So can intestinal inflammation. And allergies can cause intestinal inflammation that leads to malabsorption that causes more intestinal inflammation.

You have to pull stuff to figure out - for us, the circles didn't go away until we pulled the fructose load down. Then, hey, presto, after about a week, the eyes started looking better. After two weeks, they looked normal, to the degree that I realized how much I was used to looking at my kids and seeing those pink-to-purple shadows. Now, when they sprout, they're usually quite pink on the first day or two, and then darken, then fade again on the way back out.

It did take a bit to get them gone, to start. Is it worth trying the diet to find out? Not sure - but with young kids (1-3 or so), the normal amount of fructose they can absorb is very very low - even for kids who will later absorb just fine. So you could be maxing out already even without a 'problem' situation. Half of kids under 3 cannot tolerate the 'normal' amount, and most toddlers diets are way past the 'normal' amount anyway.

Easy check - switch from apple and/or pear and/or peach juice to frozen concentrated OJ, and dodge anything with apple or pear concentrate, sauce, juice, or the fruits themselves. White grape is pretty okay, though it is high in sugar. Ripe banana, blueberries, oranges, do those for a week or two. And dodge HFCS (it isn't a problem for all fructose malabsorbers, but it is a loading problem - too much in too many places - and some people are just sensitive to it period) as much as you can.

For most kids, just those changes until they're around 4 or so are enough to make all the difference. The whole 'we never had this problem when I was a kid' thing is valid - we drank OJ from concentrate, ate apples only in season because they were nasty and mealy out of season, ate bananas as the main fruit other than seasonal stuff, and didn't even eat that much fruit. Certainly not fruit snacks, fruit leather (that stuff was EXPENSIVE), etc. - maybe applesauce sometimes. Canned peaches, canned fruit salads, those were more likely. (Canned peaches do okay for some people, though we're off them at the moment.)

Anyway, you can try it and see - trialing is really the only way to be sure other than medicating for the allergy.

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