I have an 8 month old niece with salt wasting CAH, and who despite a good appetite, still only weighs 12 pounds. She weighed 7 pounds at birth and had surgery at 5 months old, which appeared to go very well.  She is on Hydrocortisone and Fluorinef.  She could not tolerate lactose and this was removed from her diet. Despite being tiny, she is developing well and is bright and alert.

Does anyone out there have any experience of a child with SWCAH, who does not gain weight, despite a reasonably healthy appetite.

Any info would be appreciated.

Thanks

Joan (Liverpool, England)