Liam and Decadron

Submitted by Dave Tamayo

I'd like to share a couple of things.

First, the use of decadron with bt patients should be done judiciously, and the doctors should not downplay its side effects. The side effects are in my opinion almost as damaging as the bt to quality of life, especially in the earlier stages of the disease.

In Liam's case, (he had an aggressive bsg) he was given a very large dose initially (24 mg/day), and all the benefit he got was a very slight decrease in his ataxia, but the side effects were much worse at doses greater than 1.5-2 mg. After he had been on decadron for a number of weeks, fortunately at a much lower dose, another parent shared the perspective that she would rather have a happy child in a wheel chair, than a depressed one that can walk. If we had been thoroughly apprised of the side effects, and they had not been downplayed, and if we had had the benefit of that parent's perspective, we most likely would have wanted him on a much lower dose, if any at all.

At one point we raised his decadron from 1 mg to 6 mg/day when his walking faltered more, and also because of a weaning problem. But when we finally got his dosage down around March 2001, he was once again much much happier, even though he had to spend more time in the chair.

We likely would have had a much happier, healthier (not obese) boy during the first 5 months after dx, a precious time that is not recoverable now. We feel that he was robbed of that time, due to lack of consideration of the side effects. Maybe our 20/20 hindsight will help some other parents salvage some QOL that they might otherwise lose to decadron.

Liam suffered from the following problems, which made him miserable for several months, even though he could still walk:

Also, he hated the way he looked, fat and puffy, and he hated the depression and anger.

Another thing that the residents need to know, as do their supervisors, is that even if they are assigned to checking vitals, etc of the patient in the hospital, they need to consider the needs of the patient first, and their education second. One insensitive resident tried to wake Liam after he went to sleep post-surgery. I told her he needed the sleep, and was just fine before he went to sleep. (including a vitals check by the RN). There was no obvious sign of extraordinary stress that would call for checking vitals. I had to put my foot down and insist that she leave him alone, and come back later when he was awake.