re: re: Calling on adult CAH males & parents of teenage boys!
Oct. 14th, 2004   8:21pm

Hi Eric - I was hoping you would respond! Thanks for your imput but we already stash it all over the place (except the car - not a good place with the extreme temp of cold and hot in New England). I am specifically inquiring about him carrying it on himself. The school is totally prepared in the event of an emergency, our friends and family etc. I am questioning about him being with other kids in an atmosphere that would throw everyone for a loop. I do make him carry his wallet as often as I can remind him. In there, he has his Medic-Alert card (he also wears his Medic-Alert) and info card on him and his CAH and what to do in an emergency. This has come into question because here in RI, the state is the first in the country to implement something called a "Special Protocol for Children". This is an EMS/EMT program basically that will ensure that my son is "red-flagged" so to speak in the event of an emergency that will ensure he receive the proper care ( immediate injection of Solu-Cortef WITHOUT having to require a permission phone call to the nearest ER etc). Unfortunately, as is with the rest of the country, Solu-Cortef is not part of the ambulances formulary. Although the endo has authorized Solu-Medrol as a substitute, in order for the plan to proceed, we have to state that our son WILL carry a medical emergency kit on him AT ALL TIMES!!! This is part of the protocol that I don’t seem to have any control over. We are, at this time, trying to see how to go about changing this or getting the state to authorize the admission of Solu-Cortef, but I have been told that is like fighting city hall. But I am trying anway. What the heck -- I’ve been fighting for him since he was born  --  what else is new, right? :) If you think of a way for a 12 1/2 year old boy to carry his medical kit without being overly obvious and make him feel like he stands out - let me know!! Eventually, I believe this program, although in the beginning stages, will catch-on all over the country, so relatively soon this will be a "problem" for all of us parents of boys. I figured if everyone put their heads together, perhaps someone will think of something I haven’t thought of. Thanks Eric!

ValerieD

ValerieD
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