Sheala,

You’re welcome, I truly understand all the concerns that you do have.  Yes, I did rebel quite a few times.  At one point in my life, I decided I would stop taking my medication because I thought that I was truly fine and that everyone was a bunch of idiots. ;-)  I stopped taking it for 2 weeks and thankfully nothing ever happened to me.  I did start to get severe headaches and so I started taking it all over again and have been faithful ever since.  I did rebel a lot in my teens and things, but nothing ever happened too drastically to me, so I should be thanking the Lord on it.

I understand what you’re going through on the whole giving medication to your daughter.  Every time I give my daughter her hydrocortisone or her florinef, she will spit it out in my face, or drool it out.  And since you cannot see how much it is, you don’t know how much to give to her in return.  I’ve even been compounding her medication to the flavor she likes, but no go, she has to spit it out.  ;-) I did find though that putting her medication in her formula, she was able to suck it down without spit ups.  She just wants to pay me back for all my rebellion I did.

As for having more children, yes I would.  I lived a perfectly normal life.  Yes I may have had times where I felt like I was a boy or that I was abnormal, but I did truly live a fulfilled life and my mother was always there for my support.  My daughter is living a happy life and so far has been able to enjoy everything else that babies get to enjoy.  At times I think about how stressful it’ll be to remember her medication, another childs medication, and mine.  I already get stressed from it.  I will give Ayrianna her medication, then she’ll want to eat, so I forget to get my own!  But I will say that I trust that the Lord will give me guidance and I will be fine if I have another child with CAH.  It’s something that I believe one day will be cured (hopefully).

Also, I do understand how you feel about the endocrinologist.  When I was 15 years of age, my doctor had put me on dexamethasone.  It was a new medication for me and he had not known that it would cause severe weight gain.  I gained 60 lbs in a matter of months.  When my mother pressed him about it, he stated to my mother and me that I was just eating too much and not exercising.  This was not the case because I was in a physical ed course in high school and took it every other day.  But I was eating abnormal for myself.  When he went to the coast and had a meeting with other endocrinologists, come to find out he was wrong!  Never did he apologize to me or my mother for the things he said.  He has also made me kind of frustrated cause my daughter is losing her hair and I think it may be do to the fact that she may need a higher dosage, but I may be wrong.  The best person to educate you, is yourself.  If you have a question, try to look it up on the websites.  When they told me that alopecia is what she may have, I looked it up and tried to find all the information I could on it.

Sorry if I said a lot, but I do have a lot of information considering I have lived a long time with this and now have a daughter with this.  But I do agree, you’re daughter will live a normal life.  I’m definitely living proof that you can enjoy a relationship, have children, and enjoy many other things.

God Bless you,

Liz