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Growth Hormones 4

Our 11-year-old son had begun growth hormone therapy. Is research being done on this therapy? His doctors could find very little research being done and only a few cases. Because my son is nearing puberty, time is of the essence. My husband and I have decided to try this on a 6-month trial basis. My son has been on Humatrop for 8 weeks now. He has had no side effects, has gained an astonishing one inch in height and one pound in weight. He has always been a good eater and has not experienced the eating difficulties that I have read about.

In general, growth hormone replacement therapy is always recommended for individuals with growth hormone deficiency, documented by provocative stimulation testing. This hormone is very important for the body, not only for growth, but also for normal functioning of many of the body systems.

There are several published reports of individuals with CdLS having growth hormone deficiency who have been treated and have done well.

Most of the patients with CdLS who have had growth hormone testing have been normal. For any child without documented growth hormone therapy, the use of growth hormone treatment is controversial. It is not at all clear that in the long run, final adult size will be increased, or if there is any long-term benefit. In other syndromes with small size occurring before birth, growth hormone use has not been shown to increase final size. During the treatment, growth velocity is increased, but final adult height is not necessarily improved. This has not specifically been tested for in CdLS. Because this treatment is a costly, usually lengthy, process, which, without proven benefit, needs to be carefully considered, we have not been recommending it in general. The other consideration is that for more severe CdLS patients with behavioral issues, having a larger size might make care taking more difficult. This might not necessarily apply to your son, but it has been considered when we have made our previous recommendations.

Growth hormone treatment has many potential side effects, most of which, if monitored carefully, are reversible and treatable (e.g. diabetes with low blood sugar). Some potential side effects could be predicted based on the likelihood for developing an entity (e.g. individuals with some syndromes have a higher risk of cancer and might have a higher chance of getting cancer on the growth hormone treatment). CdLS patients are not at any known increased risk for any potential side effects caused by the therapy.

However, it sounds as if your son has not experienced any major side effects and is doing well.

TK 7/31/00



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