I am the mother of a child who was diagnosed 2 yrs. ago with POTS. I know many other families who are caring for children/young adults with dysautonomia. We all have had our share of difficulties with finding the right doctor - whether it be for TTT, diagnosis or treatment. I will share with you this important point - until you get to a qualified physician, you and your son will likely continue to have frustrating experiences. Our local doctors had no clue and still don't. Pediatric dysautonomia (and its sub-categories) is a field which has seen recognition, change and growth in only the last 10 or so years. Most doctors are ill-informed. Furthermore, care and treatment for children/young adults is diferent than adults.
There are excellent physicians who can help your son. Once you have met with a qualified physician, you will know it immediately - they understand and things start to fall into place. As mentioned in a prior post, I urge you to view the Dynakids.org site - a pediatric specialty site - and to contact their office. You can talk to people who know how to help. The appropriate care for your son as soon as possible is critical.
I remember being in your shoes - not knowing how to find the right help. It can and will get better once you are on the right track.
Logan 16 Yrs (adolescent) Ttt Very Soon! Where To Go??
in Dysautonomia Discussion
Posted
Hi Sadie Lady -
I am the mother of a child who was diagnosed 2 yrs. ago with POTS. I know many other families who are caring for children/young adults with dysautonomia. We all have had our share of difficulties with finding the right doctor - whether it be for TTT, diagnosis or treatment. I will share with you this important point - until you get to a qualified physician, you and your son will likely continue to have frustrating experiences. Our local doctors had no clue and still don't. Pediatric dysautonomia (and its sub-categories) is a field which has seen recognition, change and growth in only the last 10 or so years. Most doctors are ill-informed. Furthermore, care and treatment for children/young adults is diferent than adults.
There are excellent physicians who can help your son. Once you have met with a qualified physician, you will know it immediately - they understand and things start to fall into place. As mentioned in a prior post, I urge you to view the Dynakids.org site - a pediatric specialty site - and to contact their office. You can talk to people who know how to help. The appropriate care for your son as soon as possible is critical.
I remember being in your shoes - not knowing how to find the right help. It can and will get better once you are on the right track.
Best wishes.