Dear Jennifer:

I’m sorry that you are having problems with your son’s current Endo. It is a sad state of affairs when you have to learn about the Solu-cortef shots off the message board. Where is this doctor’s head, does he want to wait until your son has an adrenal crisis to inform you about all it?

Laura K can tell you about the night time doses, this has to do with the medication mimicking the circadian  rhythm of when the body naturally produces cortisol. By dosing this way the parents hope to increase the chance of the child not having stunted height or other side effects of the meds.  

Don’t let any doctor or any person for that matter  make you feel like you are a kid asking stupid questions. You have the right to get everything completely clear in your mind. Don’t let them intimidate you. Yes, they are smart but if they don’t have the common courtesy to make you feel comfortable, then what good are they?  I’ve come to the conculsion that people  that become Endos, just don’t have good people skills and the most you can hope from them is that they aren’t rude ( lol). CAH might frustrate them. Dosing is a problem for them, to much meds and there are side effects and to little meds there are side effects for a CAH person.

Maybe, this Endo doesn’t have any experience with CAH....geeeeez he never told you about the Solu-  cortef shots, that’s just plain scary. It’s my bet, that instead of telling you he doesn’t have the answers to your questions, he makes you feel that you must be asking stupid questions. I had an Edno that did that to me. Actually , I had a couple of Endo that did that to me ( lol). When I asked them questions they would be evasive, glare at me and one even patted me on my head and said, "don’t you worry about that"( what a jerk).  It took me getting a little angry with him, nobody wants someone with CAH mad.....it’s not a pretty sight (lol) for him to finally mumble "I don’t know" to many of my questions. After that little blow up he was a wonderful doctor in my eyes.....I don’t expect them to have all the answers but I don’t want them to BS me about it.

I should tell you that I’m 32 years old ( I look 24...... lol ) and I have 11-hydroxylase deficiency simple virilizing classical CAH.  75 PERCENT of the people with classical CAH are salt wasters and the other 25 percent are simple virilizers. People with salt wasting CAH are much more prone to having an adrenal crisis vs  simple virilizers. I never learned about having an adrenal crisis until I looked at this message board. I did have an Endo tell me about the shots but she never explained what they were for. When I asked her why I wound have to take the shot, she replied in the most snotty voice," If you ever get your head stuck in a fish bowl you will need an alternative way to take your prednisone" I was so taken back by the way she talked to me that I emotionally shut down. That all I could say was a meek "no, my head is never going to get stuck in a fish bowl, so no" She never brought up adrenal crisis or the fact that you could die from it. I had to learn about that from reading this message board also. There has been a few times that I thought I was going to die from all that vomiting......hummmm I was lucky that by instinct, I took more prednisone orally and when I barfed it up I took more.   The  shots would of helped if I knew what they really were for and thankfully, I now do with no help from that smart mouthed Endo.

Jennifer, take a look a the Cares Foundation Memorial page or better yet print it off for the Endo that didn’t tell you about the shots.  

You have a wonderful attitude and stay positive. Good luck with the new Endo.

It’s a beautiful day, I’m off to the beach  :)

Aimee