Taylenne

Daytrips With A Narcoleptic Child

3 posts in this topic

Any tips on how to still manage daytrips this summer for our family of 5, while still allowing our 5 yr old Narcoleptic child to get the naps she needs? She typically sleeps for 2 hrs from 12-2pm every day. If we skip the nap or shorten the nap, her cataplexy is out of control the next day. We have picked up a large double stroller for her to curl up in on the go and that might help, but any other tips on how to get her to "shut down" and not fight the sleep in a busy park or playground?

Thanks,

Taylenne

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How about headphones with some soothing music on a IPod? It works for me. it helps if the music is only so long or it keeps me from staying asleep or re awakens me.

Asleeper

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Dark! I always fall asleep quicker when there is little to no light (though once I am asleep I sleep though a lot usually). If you can find some way to make it dark in the stroller that might help. I am not sure how self conciuse your child feels but having his/her friends seeing them sleep while everyone else is playing I would recommend avoiding. Also make the naps fun, I am not saying spoil your child but your other children are playing at the park or doing something fun while he/she is sleeping. Give that child a special food or a toy to play with the other kids when they get up to make that child in the loop. IDK just ideas. In high school I was still undiagnosed and I missed so much during lunch because that is when people made friends.

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