JB246

Please know you are not alone. My 18-y/o son has been sick for most of 3 years. He had seen so many doctors and many said he needed psychotherapy as well, but he refused. He was steadfast in the description of his symptoms and never wavered. I also have another child with mental health issues, so the subject is not taboo in our house. Despite being sick for so long, this one does not have any mental health issues and I did not seek out this appointment at all. I finally pushed to request the autonomic tests and confirmed a POTS diagnosis last month. Now that we are with the experts who fully understand this illness (Cardiology EP and Neurologist), there is no more talk of psychological issues, unless he feels he needs it. My son doesn't talk much about how he feels because he has felt miserable for so long. But after we finally had a diagnosis, he said "Well, at least now people will believe me". We cannot underestimate the impact of trust in our children. We need to support them and give them some control over this totally out-of-control scenario. They lose so much with chronic illness: independence, friends, school progress, play, etc... If you're open to recommendations, please seek out a cardiology EP or a neurologist who has experience with dysautonomia/POTS. Please know that some will say they have experience but it may be limited and they may still start walking down the "anxiety/depression" route. When you finally get to the experts, they will understand and will perform the resting and then standing vitals that should support her physiological symptoms while standing. When you get to the right team, you and your daughter will find some peace with a diagnosis and at least be on a forward moving path....one with many hills, valleys and winding turns, but at least moving forward.