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Wednesday, November 18, 2009

Creating a safety net (January 2008)

It's been four years since Ben's last anaphylactic reaction, but we couldn't get out of 2007 without one.

Although we have struggled with Ben's school this year, the mistake was one that couldn't have been predicted. For some reason, Ben's younger sister Molly assumed that the cheese in her lunch must have been meant for her brother. She gave it to a cafeteria worker who then gave it to Ben. Ben took one bite and realized immediately that it was not his soy cheese.

He also realized that he was in trouble.

Long story short, it was a good learning experience for us all and I am grateful to enter 2009 with it under our belt.

Although Ben initially resisted the Epipen, when we finally did give it to him, he realized two important things. The first was that the Epipen wasn't as bad as he thought it would be AND the second was that it did make him feel better immediately.

Hopefully he also realized that his allergies are indeed real and serious, and that as he moves into the pre-teen years he does not need to question us about them or do his own experimenting.

As his parents, the incident confirmed several things for us as well. One is that Ben's symptoms of an anaphylactic reaction are NOT dramatic. His throat "felt dry;" he had some hives and he was abnormally quiet. That's it. There were no swelled lips, no dramatic gasping, no blue tinge to his face, but it was a serious reaction nonetheless.

We also confirmed that we are not crazy. We are not some overprotective parents exaggerating about his allergy to milk. His allergies are real.

Through this experience, we also discovered that while the main players at his school do know what to do in the event of a reaction, it is the supporting staff (those with a high turnover rate) that made some serious mistakes. The assistant that Ben told about the reaction, urged him to return to his table, put his head down and rest. The school must be held accountable for making sure these people are trained in handling our children's food allergies -- even if that means that training must occur more often than once a school year.

We also discovered that you must teach your child how to get help and be persistant until you get that help -- even if a grown up gets in his/her way. After Ben was told by the assistant to sit down and "rest," he decided to leave the cafeteria and find someone else to help him.

Finally we learned that there are going to be mistakes made. However, if we work with the school we can create a safety net that catches Ben when somebody in his life (including himself) makes a bad decision. Until there's a cure, that's really as good as it can get.

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