Ask Nurse Lynn: Cataplexy

Question: My daughter is 12 (deletion). She was never officially diagnosed with cataplexy, but when she was younger there were obvious moments of cataplexy like behavior (usually if she was tired and laughing.) Is it necessary to get an official diagnosis of cataplexy, if so, how is that done, and is it something that people grow out of?

Nurse Lynn’s Answer: Cataplexy falls under the category of disordered sleep. Disordered sleep is common for those with PWS. Remember that the hypothalamus is the part of the brain most important for regulating sleep and appetite (and many other things). It is essential to be evaluated by a medical professional for diagnosis and treatment. Start with your primary physician because many insurance companies will require a referral to a sleep specialist. There may be another medical reason for these episodes, and you want to ensure an accurate diagnosis. Typically, cataplexy is something that will not be outgrown. However, the triggers, severity, and presentation may change with age. Sleep management is an integral part of your child’s overall health, and specialists in this area should be added to your team of physicians. I should note that infants are very rarely, if ever, diagnosed with cataplexy.

Having a diagnosis will be helpful for many reasons. First and foremost, there may be some medications that could be tried. Your daughter is only 12 years old and will be in school for at least another six years. You should include this in her IEP so school staff and support workers know this and can be on the lookout for episodes, provide safety, and keep records of the episodes. As your child ages, the triggers may change for a cataplexy episode, and having records of length of time, time of day, emotional state, etc., will be helpful. When your child enters the workforce, this will be useful information to provide to the employer and the person supporting your child (if needed) at the job site. Involving your child to the extent that they are able is also helpful. Teaching her how to recognize when an episode may occur and how to inform people who support her will be empowering and help her advocate for her health needs.

Below are links to some resources that may be helpful.

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