While this isn’t about CAH, it is about the aggressive actions of a mother dealing with her child’s health care, and an excellent read.

Jewish World Review May 2, 2002 / 20 Iyar, 5762 Catherine Seipp When "zero tolerance" collides with children’s health . . . My daughter, who is now in the seventh grade, attended one of the better Los Angeles public schools, Ivanhoe Elementary, through the middle of fifth grade. She has mild-to-moderate asthma and rarely needs to use her emergency inhaler. But when she did, the elementary school’s involvement ranged from OK to inept. (Her current private school is better about the inhalers, but far from glitch-free.) In first grade, one of the after-school counselors helped my daughter, who’d been wheezing, take her inhalers. At the time, her doctor had prescribed two to three puffs of Proventil, a fast-acting bronchodilator, followed by three puffs of a slower-acting one called Atrovent, which takes about 20 minutes to work. It turned out the counselor had only given her the Atrovent; apparently he’d failed to read the written instructions and had just grabbed the first inhaler handy. Luckily, her breathing improved anyway. Or at least it had by the time I picked her up, about 20 minutes later. This is just the sort of situation that University of Iowa nursing professor Anne Marie McCarthy found two years ago, in a survey she conducted of 649 school nurses: Almost half reported medication errors in their school the previous year, and three-quarters said that medication was dispensed not by nurses but by other school employees, such as office clerks or playground aides. That’s not surprising, considering that the national ratio of school nurse to student is 1 to 1,500 at best and 1 to 2,500 at worst, depending on who’s estimating the figures. Ellie Goldberg of Newton, Massachusetts, advises parents of children with various medical problems how to deal with schools. She gets calls about asthma inhalers every day. One of the most memorable: "A person from Louisiana called and told me about a teacher who pulled a drawer out, spilled all the medicine out of the cups, refilled them randomly and said, ’Gee, I hope this doesn’t hurt anybody.’" When Goldberg’s own asthmatic daughter was in the second grade, the school secretary mistakenly gave her Ritalin instead of her inhaler. My daughter always keeps emergency inhalers with instructions in her backpack, a fact kept on file in the school’s office. Despite that, no one in charge had been quite aware of this when she had that asthma attack in the first grade; apparently, she’d been wheezing too badly to speak. "Jasmine knew where the medicine was," a teacher later explained, referring to another first grader who was often in trouble for digging around in other student’s backpacks. Considering how the adults at the school had handled the situation, I probably would have been just as well off leaving them out of the loop and going over the instructions with the enterprising Jasmine. I was relieved when my daughter learned to read and proved she knew how to take her medicine by herself. Plus, unlike most adults, she was careful not to leave it locked in a hot car or sitting in the sun. One day when in the fifth grade, however, she was in tears when I picked her up from school. The teacher had yelled at her when she’d used the inhaler in class, claiming that she didn’t really need it. I spoke to Ivanhoe’s then-principal, Kevin Baker. He said I’d been "breaking the law" for five years by keeping the inhaler in the backpack instead of in the office, and that he would "confiscate" it if he found it there in the future. If the school had allowed this before, he said, it was an oversight. "So now what we need to do," he explained, in a sing-songy, Romper Room voice, "is set up a series of intervention meetings to help you understand our concerns about you breaking the law." My arguments about doctor’s orders went nowhere. "When your daughter is at school," Principal Baker said, "I am the ultimate authority concerning her health." That Robert De Niro soundbite from The Untouchables that Howard Stern likes to play -- "I want him dead! I want his family dead!" -- kept echoing in my head as I left the school office. But I’d heard enough misinformed pronouncements over the years from that school -- a jellyfish is a mollusk, "Indian" should be spelled with a small i -- to consider the possibility that the principal didn’t know what he was talking about. So I went home and called the Los Angeles Unified School District’s director of nursing. Within an hour, I had a fax on Principal Baker’s desk saying that district policy (Bulletin Z-19, Attachment F) does allow students to keep medicine on hand with a note from their doctor. I sent a copy to his supervisor, and he backed down quickly. . . . Full Article