Sherry,Tonia
Hello! I really feel for you right now. You’re in a tough spot but remember YOU as the mommy are in the position of power- not the doctor. We have 2 daughters that both have SSW CAH. They are only 20 months apart. You can imagine their first fews years of life! They are now 7 and 5 and we have settled into a very comfortable routine. Like you, our doctor did not think Abby needed the injectible, a medic alert bracelet or an emergency instruction letter until they entered school. When Abby was born we did not have internet access or this board to turn to. I wrote letters to organizations all over the country. Finally, the Baker family in PA told me I absolutely MUST have all those things the doctor said I didn’t need. I finally got my "Mommy gumption" (I have another word for it but I won’t say it on the board). I went to the endo’s office and announced that I was there for the RX for solu-cortef and needed to know how to use it. They were leary of me at first and said they would get back to me. I said I was not leaving until I had the things I came for. My daughters have had medic alerts since they were babies and know they are just a part of them, never to be removed. They know what they say and what they are for. When you get it, you can take it to the local jeweler and they will gladly remove the links for you.
As people have stated, not all ambulance services are allowed to inject medication. We live 10-15 minutes from the Children’s hospital- an excellent Level 1 trauma center. You never know when they will be so busy you won’t even get triaged for an hour- despite your insistance. You also never know when you will encounter a resident or attending who feels it is their job to make the decisions and not the parents and puts off starting the IV fluids and solu-cortef. I think some ER docs become a bit hardened by seeing families using the ER as a doctors office and don’t always see that they are very educated parents that know exactly what needs to be done and that the parents are just trying to save precious time. Also, most hospitals have to order the solu-cortef from the pharmacy which can cause a huge delay. We have experienced all of these bad situations and then some with the ER. We are prepared with an emergency letter from the endo and we notice they mostly pay better attention to our situation because it is serious enough to have our daughters wear medic-alerts. You can’t go wrong with a medic-alert! You simply never know what scenario can present itself.
A few years ago we went to visit my sister in Annapolis, Maryland (10 hours from our home in Columbus, OH). They lived an hour from the closest children’s hospital. For some unknown reason I forgot to pack their emergency medical bag. We DID NOT have any solu-cortef. Abby started to vomit, I told my sister to start checking out hospitals. My family all thought I was crazy and over reacting. She threw up again as we were discovering how far we needed to go - Children’s in DC - an hour away! By the time we got there Abby was nearly unconcious, still vomiting and starting to convulse! She was severely dehydrated and in adrenal crisis! Her levels were nearly fatal. Couple things- I NEVER forgot my solu-cortef again & my family has never again accused me of overreacting. I could have avoided the danger I put her in if I had remembered her med-bag. She could have been injected and on her way to the hospital.
In the CARES newsletter Kelly addresses the issue of the solu-cortef shortage. If you get the script, your pharmacist should call Pfizer/Pharmacia customer service at 1-800-323-4204. Some doctors are also recommending the alternative use of the hydrocortisone suppository. It takes longer (an hour) to absorb than the injectible but has longer lasting effects.
Sherry, it is always better to be safe than sorry with our precious children! Sometimes it takes a while to get there but go with your gut and then figure out a way to get everyone else to go with your gut!!!! :) Sorry this was so long! Hope it helped!
Best wishes!!!!!!!
Tonia