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re: re: re: my child with cah Jun. 20th, 2008 9:15am
Hi Sarah, I too have a daughter with CAH. She is nine months old, healthy and beautiful. She spent the first week in the NICU and during the second week at home we had our first trip to the ER. I was at home trying to nurse her and she would go from wailing for 20 seconds to laying limp, eyes nearly closed for about 20 seconds and repeat. I tried taking her temperature on the stupid cheapo thermometer that we had that took forever to beep that it was done. (First piece of advice - get a thermometer that reads quickly). Each time that I'd try taking it the temp kept going up. We called the endo and 911 and while waiting for a call back from the endo office (it was 9pm), my husband gave the injection. When the EMT came they gave her some oxygen which seemed to bring her back to acting like herself again. We took a ride in the ambulance and spent a few hours at the emergency room while she had an IV give her fluids. After their tests of levels they said their only guess is that she may have been "fussy" and that raised her temperature. Even though we had only had her a couple weeks, I knew she wasn't herself. You will know when your daughter is not being herself...more than just being fussy or crying you will have a larger sense. Our endocrinologist spoke with us in length about the evening at the ER and said we did the right thing. When in doubt give the injection. Better safe than sorry and it does no harm to them. Also, for the first few months if we thought she might be starting to come down with something but weren't sure...we'd give the stress dose (usually calling the endocrinologist first but not if it was later in the day). We'd always follow up with the endo who agreed with us using our best judgement and going on the cautious side. Once she hit about five to six months old we hardly gave a stress dose... less question of if she spit up or threw up and just her becoming bigger.
My husband and I have gone through periods where we are more worried about our daughter. After a short 9 months here is what I have learned so far... 1. Chat boards such as these are great for getting answers to your questions and knowing there are others out there in the same situation. On the other hand many of the people posting on here are posting because they have a problem/question and are looking for advice (which can scare/depress you and make you feel like your daughter is doomed to have the same problems). Parents that aren't having problems with their children are often not on the chat boards...but they definitely exist and are part of the norm for CAH. 2. We're planning on telling people other than family and close friends that she has adrenal insufficiency. The common person doesn't understand what CAH is and adrenal insufficiency is easier to understand for them. We're hoping this will keep people from looking up CAH on the internet and coming across the information about ambiguous genitalia. 3. Write up directions that are clear to you about how to do the injection and review them periodically so you feel comfortable about it. Also keep a copy of these on you so that if someone else calls you in an emergency and is caring for your daughter that you can help walk them through it. If you'd like a copy of what I typed up with the endo nurse for emergency information and solu cortef injections - feel free to email me. gtupper@brookcntr.k12.mn.us 4. Go to the CARES website and sign up with them. You get this amazing packet of information including some good emergency forms to use.
Sorry this is so long but I just kept thinking of things. Last but not least...prayer. God will care for our children. We simply (although it's not easy) need to hand over our worries about our daughters' safe keeping to him and then trust that he will bless them and keep them in the palm of his hand. Blessings to you and your family, Gina
