A few weeks ago, the weather dipped to very cold temperatures. Even though we didn't venture outside, a small draft came through a window, and it was enough to set our son off. The hives appeared and just like I had been instructed I called the Dr. to report. The new symptom however scared the hell out of me, our son started telling me how his chest hurt, and his heart was dancing. We ended up in the ER, with EKG's being done, and the diagnosis of Costochondrites and pleurisy, bronchitis, (even though he wasn't sick, coughing, or running a fever) and being told that I knew how to care for him better than what they did, with the directions to call if it happened again. During the follow up visit with his PCP, she bought the bronchitis bit, even though I told her repeatedly that he wasn't sick, and I had to finally tell her "You are NOT listening, this came on during a CU reaction and he was NEVER sick."
I am tired of constantly giving my children Benadryl because it's the only thing the Dr.'s know for sure, and all other meds haven't done jack. I am tired of getting lectured from people who don't know what my children go through or the first idea how to deal with CU. I am tired of the stupid battles that must be fought everyday. I am tired of this merry go round of Dr.'s not knowing what to do, and I am angry that I can't help my son, or make him 100% better right now. I hate that during these months the biggest thing that comes out of my mouth is "not right now". I hate being cooped up for months out of the year, (please for people reading this and not going through it, I would really ask that you don't bring up the whole moving thing right now). I understand Dr.'s not knowing what to do, it's something they don't see everyday, but is it so hard to pick up a flippin phone and find a colleague that can help? Hell, with one phone call I had the CU experts email and the NIH. Your telling me they can't do that?! So yes, I am feeling angry and defeated.
I'm sorry that I can't write a better post for you today. I'm sorry that I can't tell you right now that it's going to be o.k because I am scared to death.. But this is the face of CU. It's frustrating, it's angry days, it's parents not knowing what the hell to do, it's people telling you how to deal when they don't have the slightest clue. It's Dr.'s not listening and diagnosing something that fits perfectly in the box when dealing with a patient that will never fit in the box and a condition that only some know in name but not the impact on health or life.