Hi Lisa,

Solu cortef is the most common, I think, form of injectable that they give CAH patients. Sometimes, if there is a shortage of solu cortef they use others.

Also, after I spoke with you I spoke to another mom of a CAH child and she had her son go into crisis. I told her I had never seen a child in crisis and you had not either. She told me that you would not be able to miss it. The baby’s  coloring changed, his muscle tone was poor. She said she could clearly see that he was in crisis. So, don’t worry, I think you would know if he were in trouble.

Also, about the florinef...some SV’s take it some don’t. It really depends on your doctor. Some like to make sure they are covered and some feel that they don’t want to give extra medications if it’s not needed. I would just question your doctor as why he feels your son’s electrolytes don’t warrant using florinef. Ask what he feels would happen in your son were to catch a stomach flu.

Take Care,

Sandra