Please remember to keep the Solu-Cortef with you and/or your child at ALL times. My son broke his arm. I was in such a panic to get him to the emergency room that I brought the Solu-Cortef with me to the ER, instead of giving the stress dose at the time of the injury. Within 20-30 minutes, the signs of crisis were appearing and the emergency room physicians thought he had diabetes and needed insulin. Once the injection was administered, he was feeling better within 30 minutes. We now keep the Solu-Cortef in the car, backpack, athletic bags, and my purse.
M. H., Parker, Colorado (Winter 2004)
I’ve had trouble keeping my daughter’s MedicAlert ID on her since she pulls at it until she gets it off. After many months of guilt over her not wearing it, I finally found a solution. I bought some “shoe charms” at Target. (These are charms that you attach to your shoelaces via a necklace-like clasp.) I took the clasps off of 2 of the charms and attached them to my daughter’s MedicAlert ID. Then, I attached it to the shoelace on her tennis shoe. I check them every day or two to make sure they are still firmly clasped, but have used this for a month or so and it’s worked great.
K. Z., Bloomington, IL( Spring 2004)
For months our local pharmacy would call us and say, “Sorry, still not in, we’ll call you as soon as it gets here.” The pharmacy called around to other pharmacies and still no luck.
Finally a bright idea came to mind – our hospital has had it when we needed it, wonder if the hospital pharmacy could sell a vial to me? So I made a call and sure enough the hospital was stocked with it, but they could not sell it outright to me; BUT they could transfer it to our local pharmacy and they could sell it to us. So if you are having trouble getting Solu-Cortef give your hospital pharmacy a call.
Note: We were also told by another CAH family, if you call the product maker of Solu-Cortef (Pfizer), they will drop-ship you an order. We have not had to do that, but that is another option.
R. S., Father of a 2-year-old daughter with CAH
Elburn, IL (Fall 2003)
OTHER HELPFUL INFORMATION:
Article: How to Talk About Your Childs’ CAH
Book: I’m Growing with CAH! A book for children about CAH. Featured on the Minnesota Health Dept website.
Visit our Facebook page, CAH Champions and explore our secret groups where parents share tips and tricks for raising CAH children on a daily basis. (You must be invited to join our secret FB groups. To be invited, you must Join Our Community.)
Visit our Support page and find a Support Group Leader. They are available by State and/or by Specialized Topic. Most leaders are available by phone or email to give you the support you may need. Also, take note of Support Group Meetings. Their is a monthly Parents of CAH kids meeting for children newborn through age 5 and other meetings for older children, teens, and young adults at other times.
For medical queries in between doctor appointments, please access our Ask the Expert page. Here you can email CARES’ Medical Director, Dr. Karen Lin Su.
CONTACT
2414 Morris Avenue, Ste 110
Union, NJ 07083
Phone: (908) 364-0272
Toll Free: (866) 227-3737
Fax: (908) 686-2019
contact@caresfoundation.org