Nothing to Worry About

This morning (after coffee with some friends) I drove to a medical office nearby to pick up records for Bug Boy. Tomorrow we have to see a Cardiologist, per the request of the Neurologist. It seems that Bug Boy's blood work came back with elevated levels of lactic acid. This does not surprise me, he has had muscle cramping problems for a long time. At night his legs are in so much pain he can barely stand. He is constantly thirsty and must drink quite a bit. Since starting a muscle relaxant and seizure meds he sleeps much better and the muscle cramps have all but ceased. There is a lingering problem, however.

Bug Boy is an active boy. He is your typical run-around-the-yard-until-my-cheeks-are-red-and-I-cannot-breathe-any-longer type of kid. But the problem is that he has less and less energy to do the typical things. He can only walk part of the way around the block or ride his bike for a very short distance without getting tired. When playing on the playground or out in the backyard he gets very tired and has to stop after about fifteen minutes. Because of the muscle spasms and because of the elevated blood levels we have been asked to see a cardiologist. Apparently this exhaustion (and the dark circles under his eyes) can be heart related. Because, after all, we need to see yet ANOTHER specialist.

I am sorta not worried. We had a heart work up when he was eighteen months old that showed he was healthy but his blood has a little trouble keeping him warm when it is supposed to and he is sensitive to extremes of heat and cold. We have to be careful in the summer not to let him get overheated, air conditioning is a must. He sweats more than your average kid, again a result of the lactic acid. It also causes problems with digesting the -oses, you know, glucose, fructose, lactose, etc. His heart works fine (at least it did four years ago). But they are concerned with the tiredness, which may or may not be a result of sleep cycle seizures. Now that he is on seizure meds they still feel it should have "gone away" by now. So, tomorrow we will spend three hours at duPont, getting an EKG, ultrasound, etc. They will tell me he is fine and yet the problem will persist. Then they want to do a gosh-awful procedure called a muscle biopsy to rule out a few other things.

Sounds so minor and yet it is all complicated. Something metabolic is going on with Bug Boy and they also feel Bugaboo may have it. Since Bug Boy is older they are choosing to go through all of this first with him and then will test Bugaboo for whatever they find. We have no way of knowing how bad Bugaboo's pain or intolerance is because he cannot say, "Hey, guys! My calves really hurt! Hey! My back is having spasms!" It is so difficult to figure it all out with him.

Wish us luck. Pray for us. I do not need another thing on my plate. And this is supposed to be our last appointment for four months!