My son Sam was diagnosed with early onset salt wasting CAH at 4 weeks of age. At the time, the state we live in didn’t include CAH in its newborn screen. He has always been extremely small for his age and to this day is not even on the charts for height (he is just below the fifth percentile for weight). He has had other issues which his doctors believe stem from his history as a neonate as opposed to his CAH. At 22 months he had to have dental work done under general anesthesia to repair decay caused by lack of enamel on his upper four front teeth. He was diagnosed with a mild Chiari malformation of the cerebellum at nine months. His neurosurgeon followed up with MRIs until October of 2003 when she determined it had worsened. He had corrective surgery in December of 2003. He’s been experiencing periodic episodes of hypoglycemia for a little under a year, which his endo feels was due to underdosing at bedtime.

Amazingly, he is a very normal, healthy little boy considering all that he has been through. His father and I are VERY concerned, however, about his size. His first endo was on the verge of diagnosing him as growth hormone deficient and starting replacement therapy. Unfortunately, he took another position and his new endo sems completely unconcerned about his size. Sam was making almost no GH for the first two years of his life then started having low normal levels about a year ago. His new endo feels he’ll just keep growing longer than everyone else and catch up. We are sceptical about this.

We want to know if anyone else has a child on Prednisolone and if so are you having growth issues. Sam is on 0.05mls in the morning and 0.075mls in the evening. We are interested in learning more about Circadian rythym dosing and it’s positive effects on growth. He also seems very restless when he sleeps and wakes up nightly crying. We are wondering if there is a connection between his poor sleeping and his medication. 

We don’t have a computer, but periodically check our messages  and this site at the library. It may take us awhile to respond.