Family Matters

An IRSF Family Advisory Board (FAB) Publication

February 24, 2009

An Emergency Notebook:

What's Your Advice?

We're asking you to help us gather valuable input from RettNet families on various topics with our "Family Matters" e-publication. This information will be gathered and posted on the IRSF website for future reference.

Our topic this time is "An emergency notebook."

What should go into that book? Are there any things specific to Rett Syndrome that should be included in that book beyond what generally parents of disabled children have in their emergency notebooks?

"I am working toward assembling a notebook that has all of my daughter Rachael's useful information in one place," Kenna says. "I remember seeing a link, perhaps on RettNet, a couple of years ago, with a form, possibly from a children's hospital, for an emergency notebook. I want to find that and print it off and put it in a binder. I know that any notebook should keep information regarding the type and amount of medication that Rachael is on, the names and phone numbers of her doctors and therapists, insurance information, pharmacies, and names and numbers of family members."

"I made a photo album, with information and photos about Aniko's medications, diet and schedule," Jane says. "It let medical professionals and caregivers have instant access to information which they could see."

Please share your tips and questions. Your IRSF Family Board and our friends on Rettnet would love to hear your stories and advice. Just respond to RettNet on this subject.

So, we'll look forward to hearing from you, our Rettnet experts. Please reply with your comments to: rettnet@home.ease.lsoft.com.

Kenna, Jane, Sherri, Dan and Will for the Information and Communication FAB Subcommittee

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