I am almost 32 weeks pregnant, and when my husband and I goto the hospital my 16 month old daughter will be staying with my husbands mother (in our home, I feel more comfortable with them here, her house isn’t baby proofed among other things)

I wrote her this letter stating her doses and times of her medication. Although my husband says it is fine to write the letter, he says his mother will be offended by it. She has never watched our daugther for more then a couple hours. So has no idea of her medicine dosing, the times of the doses or CAH in general except what we’ve told her. I am just trying to help her out a little.

I just wondered if anyone could read the letter I wrote and tell me if I am just being overprotective about things. And if she would have a right to be offended. The letter follows: (I’ve omitted any phone numbers specifically for this post)

Medication:

Anika takes her medicine 3 times daily. The Cortef is every 8 hours (except for the last dose at bedtime) and the Florinef (small yellow pills) is once a day, only to be given in the morning with her 6am Cortef dose. Please don’t stray from these times, she must have these exact doses at these exact times of day.

6am - one 5mg pill of Cortef (one whole pill) and a half a pill of Florinef.

2pm - 2.5mg of Cortef (half a pill)

9pm - 2.5mg of Cortef (half a pill)

To mix the medicine, take the correct doses and crush them in the pill crusher. Then mix it with either juice/milk or water, usually about 4-5 ml of liquid is enough. Please make sure that the entire dose of medicine is taken. Her meds are an important part of her life. When I give her meds to her in the morning I don’t usually wake her up. She will usually take the meds with no problems for you.

Naptime is 2pm and Bedtime is 9pm sharp. You’ll have to lay with her for a while before she falls asleep.

Please don’t give her any soda, or any other juice besides Juicy Juice.

She usually sleeps from 9pm to around 9am…anything longer and she usually won’t nap. Her naps can be anywhere from 1 hour to 4 hours. More then likely she will only sleep for 2 hours max.

In the event of a fever, if it is 101F she will need a double stress dose of her Cortef. And anything higher then 101F she needs a triple stress dose of her Cortef and a trip to the ER. If you have to take her to the ER please make sure you tell them to check her electrolytes. They must do this to ensure her levels are where they should be. Please don’t let them tell you she is fine. These levels absolutely need to be checked ASAP. Anika can go from bad to worse in minutes, unlike another child without CAH.

They will probably ask you at the ER if she has any conditions. She has Salt Wasting Congenital Adrenal Hyperplasia. Salt wasting meaning her body does not retain any of her salt. Her Cortef is for the CAH and the Florinef is for her Salt Wasting/Electrolytes. They will also ask you the doses of her meds, which I have listed above.

Her primary care doctor is: Dr. Gail Dolan. During business hours she can be reached at....

After Hours Pediatrician On Call: .... They will ask you her name, what is wrong and ask for your phone number. The on call Ped will call back usually within 5-15 minutes.

Poison Control Center: 1-800-222-1222

Dr. William Clarke is her Endo he can be reached at: .... During business hours you will need to ask to speak to Jennifer Hutchinson, she is the Endo Nurse Practitioner.

After Hours On Call Endo: .... When the hospital operator picks up ask to speak to the Pediatric Endo on Call.