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parenthood after dealing with male factor infertility and multiple IVF cycles

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I Guess We’re Not Totally Crazy After All March 27, 2009

We got the last of Adam’s test results from Denver last Friday, the disaccharidase panel done via biopsy of the small intestine. This tested five different digestive enzymes: lactase, maltase, sucrase, palantinase, and glucoamylase. All five of them came back very low, less than the third percentile for each.

Yep, that’s right. We now have an actual test result to back us up. All of this food stuff isn’t in our heads.

I’ve discussed the results with two different GIs. I took Adam to see a new GI on Tuesday. I had actually scheduled the appointment before we arranged our Denver trip but decided to keep it in case we needed follow up care locally. I really liked the new GI, and he seemed to really understand what was going on with Adam. (And when I mentioned what had happened with the allergist in Denver his reply was that he didn’t have much use for allergists. Hah!)

Anyway, the Houston GI said that the results could be caused by one of three things: 1) a primary disaccharidase deficiency, ie. an enzyme deficiency that Adam was born with, 2) a secondary disaccharidase deficiency caused by damage to the mucosal layer of the intestine, or 3) lab error if there was a delay in getting the tissue into the container resulting in the enzymes present in the sample being wiped out.

Yesterday I spoke to the GI who we saw in Denver about the results. He thought that we could very well be dealing with a primary deficiency. He didn’t think the results were due to a secondary deficiency because there was no damage seen in the intestines. They looked fine both during the scope and under the microscope. He also didn’t think that the results were due to lab error. He said that the tissue sample is put in quickly to avoid that.

So, where do we go from here? Basically we just have to wait and see which foods Adam tolerates. The new GI said that we just have to go by food trials to determine if Adam is dealing with non IgE allergies to proteins in foods, enzyme deficiencies that inhibit his ability to digest sugars, or both. The Denver GI agreed.

So, that’s the plan. We’ll keep trialing foods, keep our fingers crossed, and see what happens.

I know several people have asked how Adam is doing now. He’s doing well, really well. The other day Dan said to me, “It makes me feel so good to not think of Adam as ‘poor Adam’ anymore.” That pretty much sums things up. He’s sleeping better, his mood is better, he’s eating better. He’s just better.

There are changes in him that I know other people probably don’t notice but that I see as huge. It’s all because he’s feeling better, and that makes us all feel better.

Adam’s doing well with the Neocate, and we’re making progress with our food challenges. The first two things we tried were bananas and sweet potatoes, and neither went well at all. In hindsight, though, that makes sense given the fact that they’re both high in sucrose. Since then things have gone better. In addition to his barley, he’s now eating black beans and green beans and we’re in the middle of an avocado trial right now.

The digestive enzyme results will be helpful in deciding which foods to trial when. It should be interesting to see how he tolerates foods with different sugars. Right now, though, we’re focusing on foods that are low in sugar in order to hopefully build up his diet some before we start experimenting too much.

It feels good to have a piece of the puzzle filled in. I don’t think it’s the only piece, but it definitely could be a big one. It will be a challenge to deal with the enzyme deficiencies, especially if they are indeed primary, but at least we know what we’re dealing with at least to some degree. Having a little light thrown on the situation is much better than fumbling around in the dark.

• Posted in : our main man
• Author : amanda

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