Ray of hope

We had another appointment at Mayo yesterday. For the first time ever, I feel as if we left with a clear vision…a plan, if you may.

In December, George went through a test that checked the level of orotic acid in his urine. Apparently this acid level becomes high when you are unable to break down proteins. Having a high level of orotic acid can also lead to having a high level of ammonia in your blood. High levels of ammonia can cause a host of other problems that George does not need to deal with, and will more than likely lead to IV’s and hospitalizations.

So, the only way to keep his orotic acid level lower is to limit his intake of protein. Yep, that’s right, George can’t eat meat.

Well, I shouldn’t say “can’t.” He can eat SOME protein, just not much. We are limited to 9 or 10 grams of protein per day. And let me tell you, that’s not much.

For example, one cup of 1% milk contains 8 grams of protein, 1/4 cup mozzarella cheese contains 7 grams protein, a slice of bread contains between 2 and 5 grams of protein, a 4 oz. hamburger patty contains roughly 28 grams of protein, a large egg contains 6 grams protein. Check your labels, you’ll be amazed at what has protein in it.

As difficult as it will be for me to switch up my cooking and meal preparation, the great news is that by changing his diet, George will feel better, should catch up developmentally and hopefully no permanent damage has been done.

See, if we hadn’t been persistent in making sure they were checking out the possibilities, there’s a really great chance that this could have been missed. In fact, the first time they suggested testing his orotic acid, the doctor specifically said that she didn’t suspect anything would show up. Then, when it did, she figured the test was a fluke and that the second test wouldn’t be high. And then, when THAT one was, she suggested that we run the allipurinol test, but didn’t know if we needed to rush on it. Since we were already at Mayo, I encouraged her to go through with the scheduling. That was December, and here we are now.

Now, sometimes they don’t catch these deficienicies until there are very significant delays. And for the most part, George doesn’t have any significant delays…at least none that would normally raise any flags. But the fact that we are able to get ahead of this and hopefully prevent anything catastrophic from happening…well, that’s big.

So now, we sit and wait and see how it goes. We should be getting a shipment of his “medical food” sometime this morning. (Since milk is pretty well out of the question, we’ll now be on a special formula to replace it. It’s amazing the stuff they have out there!)

We head back to Mayo in April to recheck everything and see where we’re at, but I’m confident that we’ll have some big things to share. And I can’t wait!

Now, don’t get me wrong, the irony of a cattle producer’s son who can’t eat meat isn’t lost on me. But when you’re a parent, you quickly learn that you will do whatever is best for your child…no matter what.

And I wouldn’t have it any other way.

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3 thoughts on “Ray of hope

  1. I am SO glad they finally figured this out!!! I know you have been through a lot, trying to figure out what was wrong.

    I feel so blessed that the doctor I took my daughter to a year ago didn’t rule ANYTHING out and within 48 hours, knew that she had Crohn’s diseases, something you usually don’t see in a 7 -year-old (at the time).

    Hang in there!!! We’re all pulling for you and your family!

  2. I am grateful you have a plan and hope that this is the key. My prayers are with you all and esp. the little guy. It seems like a lot of work to keep him on the diet but I hope it all falls in place.

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