Hi Carol,JanetDAt your first appointment the doctor/staff will probably ask lots of developemental things (these would pertain to both of your children). When did the first tooth come? crawling? walking? etc. How is sleeping, eating? (At least these are things that we went over at our first ped endo appointment).
They will probably also do a VERY accurate length and weight to find out where your daughter is on the growth curves.
At our first appointment they did an ACTH stim test -- based on blood tests done by our ped urologists, we were all fairly confident that my daughter had CAH. Even so, this wasn’t the appointment that they wanted to discuss CAH at. They wanted to make sure she had CAH and know what type (she is an 11-beta).
It was at the 2nd appointment (it lasted 2 1/2 hours!) that I had the oppertunity to ask questions, get the specifices of regular doses, stress doses and injections. The one thing I had the oppertunity to do at that appointment was to learn how and to practice giving an injection (the endocrine nurse let me give it to her!)
If your daughter does have CAH, the information you will want to know is:
1. What is the normal dosing and what type of a schedule does your doctor want you to follow (some doctors want every 8 hours, some want 3 times a day, etc).
2. Learn as much as you can about stress dosing. But realize that you will probably need to call the ped endo’s office to check with them on different things. There is no way they can cover every situation our kids find themselves in.
3. Learn how and when to give an injection. For me this was REALLY SCARY. But honestly, doing an injection is much easier than doing the emergency room (though sometimes you have to do both).
4. Find out who to call during office hours if you have a question (my ped endo’s office has 2 endocrine nurses that I can page). Also find out who to call during non-office hours. As a mother of a 4-year-old you know that kids don’t get sick always during the office hours!
5. Find out what the hospital preference is. My ped endo’s prefered hospital is a 45 minute trip (when there is no traffic), but I have at least 6 others that I pass on the way (I live in a metropolitin area). Depending on the situation, you might need to make alternate plans.
Let us know how things go after the first appointment.
Best Regards,
Janet