Tip of the Week: Emergency preparedness

With the devastation happening in Texas this week, it is a good time to evaluate your emergency preparedness.  It is never easy to prepare for emergency, and adding a family member with Prader-Willi syndrome to the mix makes it that much harder.  Here are four tips: 

Medications – It is best to have an extra month supply of meds in hand, but many state funded insurance companies do not allow for this. Talk to a representative from your child’s insurance company and explain that you need a one-time allowance for an extra month of medications. Many parents have been successful doing this. Most private insurances will allow for medications to be prescribed 90 days at a time. 

Food supplies – It would not be difficult for a typical person to live off of canned or pre-packaged foods for a few days, but for the person with PWS, this could be an extreme challenge. Have an “emergency menu” and make sure your kids know that in the event of an emergency, their diet will change for a short amount of time. Be sure they know what that menu will look like. The content of the menu isn’t as important as it matching what you have written down. Have one gallon of water per day per person. 

Activities – Do not be left without activities if loss of power is a possibility. Puzzles, word search books, coloring books, and hand held games are perfect, but be sure that they are new and not part of their typical activity choices.

Important papers – In the event that you need to leave your home quickly, it will be hard to remember everything. Have a backpack hanging somewhere easily accessible with copies of all important papers (insurance cards, birth certificates, medical information including pictures of prescription bottles). 

Planning ahead for an emergency will make the experience a lot easier.


Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices.

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