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re: The good, the bad and the ugly Feb. 23rd, 2006 4:46am
Thank you - what a brilliant and honest post - thank you again. These too are my thoughts - having CAH is like being a second class citizen and my teenage son who has it, feels this way too. It is not a bed of roses........... and I applaud your honesty. It is people like you we need so badly to learn from and we need to be educated so the same mistakes made by the medical profession can be changed. I agree that you can look for the positive things, as you can with anything in life, but by ignoring/hiding the problems will not help improve treatment. It seems some medics are too arrogant to be educated and I feel the most important thing is to educate new parents, hence I think the new book on CAH by Carol and Dr Rivkees so fantastic. How many parents who use this board have been unhappy with the treatment of their child..... many!! I read the posts of adults like Susan, Aimee and Jayne and from them we can learn not only the physical problems but the emotional ones.........
Look at what doctors have discovered recently - that the drugs we use are far more potent than they ever thought, dex is 80 :1 mg hydro....... yet some doctors do not even recognise this........ because the side effects often take years to surface, adults and those in their late teens may suffer problems which will surface only in later years, however even these could be prevented if they recognised........
