My SWCAH son suffered from both being overweight and underweight. He is now a teenager and sees himself as overweight but he is not, he is actually underweight. Our real problems began in puberty, where the dose was increased to dampen levels, and it all spiralled. Reduced the dose, changed the dosing times and he lost the weight. 

 

It surprises me that most of these posts all have a problem with in fact underweight, when through the years with following this board most have had problems with weight gain.  I think doctors have now realised that these medications are far more potent than previously thought, so younger ones do better. In saying this however, I do think CAH is such an individual disorder and people are affected in different ways responding better to different methods and medications. If you do a search in the achieves you will see many parents posting about weight worries and in fact many adults.  I feel the key to weight issues and growth problems is the medication and the way it is given.  If you look at those who follow the circadian dosing, their children have achieved better growth and stable weight, some don’t have to worry about either.  

 

I agree with the feeling guilty and being judged when your child is either over weight or underweight, it is easy for these doctors to sit and judge us but aren’t they really letting us down? Are they doing all the right tests? It is too common a problem with CAH not to be linked and if weight is an issue or growth and if you are concerned ask for a second opinion. I blindly trusted doctors, but now realise they did not really know and it is easier to blame the parents. I am being honest with you as I do not want anyone to make the mistakes I did by solely putting my faith in the doctor I was under at the time as I cannot undo the damage my ignorance caused.