Congenital Adrenal Hyperplasia

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re: adrenalectomy ?????
Feb. 2nd, 2009   4:49am

Absolutely NOT, especially not in boys. There is no need for this, it leaves your child without adrenals, they can die for more easily.  

Please speak to your endo and if he is not giving you the answers and support you need, then change. Most paediatricians do not have the same knowledge and experience as endocrinologists.

Have you got the book on CAH? Congenital Adrenal Hyperplasia A Parent's Guide by CY Hsu and Scott A Rivkees?  It is really very helpful.

Treatment for CAH has got so much better as doctors have learnt more and children who are born with it now, are luckier because of this.  Each child is individual and is affected differently. The same thing happened to my son when he was born, so I understand and empathise with what you are going through now, trying to understand all of this and it is very new.  This is the hardest time, coming to terms with CAH, most people not having heard of it before, including doctors.

Ask your endo to write you a plan of what to do when your son is ill, do not be afraid to contact them for help and to ask them any questions.

I am not sure what country you are from, the USA I think but if you look at the CARES website, there is also very helpful information there, if you contact them they will help you.

It does get easier, you are doing a really good job, and all these worries and questions, I had them too, it is not easy and the worry can seem overwhelming at times, this is why it is important to get a good doctor, one who listens. Do not be afraid to contact them.

Ask for an injection kit and learn to use it, this will give you peace of mind and remember when they are ill, it is better to give more medication than not enough.

Wishing you all the best

Mary

 

Mary




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This Thread
    Adajia: adrenalectomy ????? (Feb. 1st, 2009   8:10pm)
      Mary: re: adrenalectomy ????? (Feb. 2nd, 2009   4:49am)






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