Congenital Adrenal Hyperplasia

ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS! 
If you represent a media company, are a student writing a report or anyone interested in interviewing our visitors, please seek permission (see email address at the bottom of the page) before posting your requests or emailing solicitations for any talk show, magazine, thesis, census or other interview on any message board on this site. If not, your posts WILL be removed. Please respect the privacy of our members.

    Return to Page 12Post reply       


Son recovering from transplant/graft
Feb. 22nd, 2010   6:11pm

Do to the injury my son incurred a couple of years ago that left him paralyzed from the waist down for over a year, he had to have part of one of his tendons on his leg transplanted to the other side of his leg so that his ankle could be strengthened and allow him to walk more normally.  He had the surgery done at Yale so his endos were right there and available to help with any questions the surgeon had about stress dosing. That was great comfort to us during the many hours we were there waiting.  I think that is the key to feeling some control when your CAH child is undergoing surgery. Just making sure that everyone is in touch with each other if they should come upon any questions during the operation.

My daughter is still in a terrible place and I am almost at my wits end.  I can't seem to get a good team together since she got home from two weeks at an eating disorder clinic in Boston specializing in anorexia nervosa.  She then went to one week at an out patient program in CT (where she lost two pounds) and we just can't seem to get a handle on it.  This disorder is a monster that is stronger than anything I have ever seen and believe me I've seen a lot. This is a 24/7 job because it is on her mind that long.  It's very difficult to watch your beautiful, happy go lucky, honor student become an anxiety ridden, unhappy skeleton of herself.  The worst part is that people can be so mean.  They don't understand what these kids go through and what it takes for them to keep going.  Some people think she just wants to be model thin.  They don't realize that there is no choice for them without major help.  They are risking their ability to have children, their overall health, the ability to enjoy the simple things in life and most of all, their lives.

Please think twice before you pass judgement on anyone.  No one knows what goes on at home.  This is a problem that can destroy a family and at the very least, alter the entire path or plans you made for your life.  God bless you all!!!!!

LynnT

    Return to Page 12Post reply       


This Thread


- Post a reply - 

page processed in 0.291796207428 seconds