Head Spinning

Just a couple of notes to add to my last post, and an error to fix:

Hereditary fructose intolerance (HFI) probably has an incidence of somewhere between 1 in 10,000 and 1 in 100,000. It's very, very rare. Since fructose malabsorption is found in about 3 out of every 10 people, or close to 30%, it's a much more likely culprit.

I'm still trying to figure all this out. I don't really understand it very well yet, but I'm finding a lot of conflicting information about what foods are and aren't problematic for people with fructose intolerance or fructose malabsorption.

She may not even have this problem at all, but I'm trying to learn about it so I know what questions to ask the doctor.

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I can't conclusively rule out sucrose intolerance at this point with what little I know about the various conditions, either.

Apparently there are at least 5 different variations of Congenital Sucrose-Isomaltose Deficiency, 3 distinct types of inheritable fructose intolerance, and nearly infinite variability in sensitivity with Fructose Malabsorption. (Fructose Malabsorption can range from asymptomatic to quite severe, and can require varying degrees of dietary adjustment from almost no restriction to as restricted as the HFI diet.)

There are other types of sugar malabsorptions, too. Sorbitol malabsorption alone doesn't fit, although it goes along with some of the previously-mentioned types of sugar intolerance. At least I don't think we have to worry about whether it might be glucose intolerance--she doesn't have any signs or symptoms of diabetes.

According to this article, "Reducing sugars include lactose, glucose, fructose, and galactose but not sucrose." So apparently any of those sugars could have caused the fecal reducing substances tests to come back positive.

I'm a bit overwhelmed and feel like my head is spinning at the moment, between still trying to get over the flu and taking in the information overload from reading about every type of sugar intolerance I can find information about.

At this point we're waiting for calls back from the pediatrician and the GI specialist to see where to go next. Meanwhile, we're trying to trial foods one at a time to see whether Baby E can tolerate them, and how much of them she can tolerate.

I allowed her to eat two blackberries tonight, and she had no obvious symptoms. I'll probably let her eat three tomorrow and see what happens. Some of the things, like honey, we've never really trialed alone, so we don't really know if it's that or another food being consumed at the same time that's giving her symptoms.

There are a lot of confusing things right now. For instance, I'm going through charts of the sugar content of foods. I'm looking at the ones we know give Baby E issues, and trying to figure out if there's a common thread between them. So far I'm not finding one. For instance, bananas should be one of the fruits least likely to cause issues with fructose malabsorption, and yet they cause noticeable symptoms for E within an hour or so of eating a relatively small amount--more so than we've noticed with some other fruits that "should" cause more issues.

I don't think this is something we'll be able to figure out by ourselves, so I'm really praying that the doctors will have a lot of wisdom.

We are likely dealing with at least 3 different issues here:

First, the allergies or severe intolerances which cause the rash/itching/swelling type of symptoms and which affect E. These cause her symptoms through my milk even if I eat them and she doesn't. Most likely this is just corn and soy, and it is possible she has outgrown these or may in the future.

Then there is the sugar malabsorption issue, which is completely separate. That should not cause symptoms through breastmilk, so at least for that one we only have to worry about what she is directly eating. Depending on the type of intolerance she has, this may also include starches and other types of foods.

Thirdly, we have to consider the possibility that there may be some other kind of intolerance, such as an individual intolerance to bananas that's separate from the sugar issue.

If that's not confusing enough, there are plenty of other things that could be complicating things as well, such as her reflux and the fact that she's a two year old who gets grumpy, fussy and sick sometimes just like any other two-year-old.

The good news is that, whatever the issues are, she is a healthy, thriving child who just happens to have frequent mild-to-moderate unpleasant GI and allergy-like symptoms. She is gaining weight, developing normally, and is generally healthy and happy.

We just need to figure out how to help her be the healthiest she can be, and try to keep from feeding her too much of anything her body doesn't process well.

But right now, I need sleep.