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Monday, January 30, 2023
HomeBlogFranklySteinHaving a child with a debilitating syndrome — FranklyStein

Having a child with a debilitating syndrome — FranklyStein

I have a friend whose 16-year-old son rarely leaves the house.

When he was younger, he played soccer, excelled in school and hung out with friends. He was in my twins’ class in elementary and middle school, but by eighth grade, he’d missed more days of school than he attended. He was just too sick to go. Some days he had bad headaches; some days his stomach was upset; some days he was just too tired to get out of bed. Some days it was all three, and he felt like he’d been hit by a Mac truck.

Eventually he was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS — a debilitating condition that affects 1 in 100 teens and young adults as you can read here. Though it’s tough to pin down the cause of POTS, in my friend’s son’s case, doctors think a case of Lyme disease when he was younger might be the culprit.

My friend is doing everything she can for her son. She home schools him when he’s well enough to think. She takes him to every specialist she thinks might be able to help. Most of all, she prays. She prays that one day soon he might feel better and be able to start living a more normal life again. But she doesn’t know. No one does.

“It is so hard to watch your child suffer from what seems like many unconnected symptoms,” she says. “It took us five years and countless appointments before someone identified all of his issues as being connected.”

This particular friend isn’t the only one I know who has a child with POTS. At least three families I’m acquainted with are dealing with something similar — with varying degrees of severity. One friend’s daughter is doing her best to live as normal a life as possible after several concussions brought on the syndrome a year or so ago. Another friend’s daughter was out of school last year because of migraines and because she kept passing out. The third was just recently diagnosed.

There is nothing worse for a parent than to watch a child suffer. Some days, my friend’s son seems good — almost like there’s nothing wrong at all. But then there are bad days, and those seem to far outnumber the good. The worst part, my friend says, is being told by doctors that it’s all in his head or just a case of anxiety.

“It’s so frustrating to know your child and know that the migraines and dizziness, fatigue and GI issues are not all in his head, but not be able to find a doctor who believes you,” she says.

Luckily for her, POTS is getting more attention these days as more adolescents and young adults are being diagnosed.

To read more FranklyStein click here

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FranklyStein is a blog by Chesapeake Family Magazine editor Betsy Stein, who lives in Catonsville with her husband, Chris, and four children, Maggie, 17, Lilly, 15, Adam, 15, and Jonah, 11.

 

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