DebraNeumann

Hello everyone and thanks in advance for your input. i really value all the experiences out there that may be helpful to us. my daughter was recently diagnosed with POTS and it has been a steady downhill course since August for us. Her physician stresses that it is important for her to do as much as possible each day. She is pretty lethargic -- doesn't want to get up, or to drink lots of fluids, or to take meds. The past 2 weeks she has mostly just been in bed, quite irritable. I am wondering about ways that others have helped their children/adolescents apply their will to the healing process ( i know there is a physiological reason for her symptoms and it is not just a matter of will). Any ideas or vignettes of how you have helped your teen would be appreciated so much -- thanks!

Hello and many thanks to everyone who has replied to my questions!!! I have incorporated many of your suggestions in a draft letter which I will take to our school, after running it by our medical team. I do appreciate all the help and support and I learned A LOT! I am very grateful for your input, and my entire family, especially my daughter, thanks you.

Hello everyone -- my 13 y.o. 8th grade daughter was diagnosed with POTS in August, 2010 -- right before school began. She was able to continue attending school for a couple weeks, but her condition kept getting worse. She was home for a few weeks. She has now seemed to 'bottom out' and has a bit more energy. We are applying for home based instruction through our public school district for her. Meanwhile, she wants to return to school -- mostly she wants to be with her friends. She is determined to attend school, which her doc supports. However, we are well aware that her symptoms will come and go, making attendance variable. The school system says we must decide on a schedule for her in advance (e.g., she will attend the final 2 hours of school daily; she will attend afternoon hours daily) and she must be able to commit to that schedule. We think this is not reasonable, as we cannot predict how she will be feeling from one day to the next and so cannot commit to 2 hours daily. The school system says that without that type of consistency, she cannot return to school and must use the home based instruction, which she doesn't want. I don't think this approach will be helpful to her POTS, as her doc says that it will be helpful for her to get out to school. I would like to hear from other parents about your experiences working with school systems with POTS and what has worked for you. Thank you so much -- i have really appreciated reading the posts on this forum!