Dear Taffenay,

This is the first time I have visited a CAH site.

My name is Vicki and I have a twenty-five old son with CAH== 17 hydroxy salt-loser. He was diagnosis at 16 days old. The first endo that looked at him handed him to me at 27 days old and told me to take home so he could die around his family. Refusing to give up, I drove four hours to another Childrens hospital where he was whisked out of my arms and immediately admitted to intensive care. Turns out, in addition to CAH he was also intelerate to lactose. The poor thing was starving to death. That was a battle in itself.   We spent the first 3 years of his life in a hospital. When he was 5 years old he would pass out for no reason and would remain in this comatos state for a couple of hours. His breathing was labored. He did this four more times in a three months period. Then the episodes when away as mysteriously as appeared. All the specialists and doctors could never identify the cause of his episodes. When he was 11 years old he lost his grandfather (my father). We were so busy with our own grief that we did not notice the stress on him. We almost lost him to adrenal failure four days after we buried my dad. At age 14 he was in a terrible auto accident. The doctors simply said - listen to his mother, she will tell you what he needs and when he needs it. The doctor would order the blood tests and we would discuss his diagnosis and treatment together.

I do not have medical training. I could not give him the intermuscle injections when he was a baby. Thank God for his father. This helped Dad too. He felt like he was contributing to his wellbeing. His subQ injections were not so bad. He was injecting himself at age 5.

I have read several messages on this site and I have seen quite a bit of similiar problems with my son through the years. The darkened skin in the creases of his palms, the dark ring around his neck, the grayish tint of his facial skin, and sad puppy-eyed look in his eyes. These are signs of something being off. Hydrocortisone injections and sodium tablets have been the proven method with my son. 

I still accompany him to his endo visits. I walk in with all my logs. I have taught his local pediatricians how to treat him. It is very important to learn the signs that your son shows.  I have always - always doubled his dose before taking him in for any medical treatment. Too many times the doctors are not fast enough to give him the hydrocoritsone that he so desperately needs. And their bodies fail all too quickly. 

I sincerely hope that all your prayers are answered and your little guy recovers quickly.