My 16 year old daughter started experiencing fatigue 2 years ago, then headaches (constant) and after multiple visits to multiple specialists, was finally diagnosed with POTs a year ago (by a Dr who didn't think a tilt test was necessary (big mistake), and I didn't know enough to demand one). He prescribed salt for 9 months, which didn't work, and when she finally got a tilt test (Feb '16) and had a severe reaction. He prescribed Midochrone & salt.
The headache is a bit better, but the fatigue is not - hence my question: when she feels utterly exhausted, the last thing she wants to do is to get up and exercise. I've heard a lot about the Mayo "POTs boot camp" and that one of the key elements is to get kids to take responsibility for themselves and for parents to stop nagging. I would love for that to happen.
The challenge is: what to do when she feels utterly exhausted and wants to collapse? A pattern has emerged: after a week of school, she is flattened & would like to sleep in and rest for much of the day. When I encourage her to get up and move, she says that she tried and felt faint. She looks grey & exhausted. She isn't hooked up to screens and is missing out on a lot of activities she would have loved to do. She just doesn't have the energy.
How can one teach a teen when it is worth "pushing past" one's limits and when to "listen to one's body"? Seems like a real conundrum, and very hard as a parent to watch this and wonder.
The doctor suggested cognitive behavioral therapy, so she has started this, but she doesn't find it helpful.
How can I help her to help herself?
Please share practical suggestions.