POTS - the syndrome, not the weed(s)

a friend sent me a link to story that abc did on a subject that our family has been living with for the about the last five years. the syndrome is called POTS - Postural Orthostatic Tachycardia Syndrome and one of our children was diagnosed with it at Mayo's.

we went through 14 months of being told our child was not "really sick" - it was anxiety and depression. . . of course there was anxiety and depression, as a result of a constant, severe headache, bone numbing exhaustion, low blood pressure, high heart rate, dizziness, times of extreme sensitivity to heat, noise, and light with vomiting, unexplained pupil dilation. . . and oh yeah, did i mention the severe headache that never went away?

attending school was close to impossible - friendships withered. our child was sick and becoming increasingly isolated and lonely. so we went from doctor to doctor, looking for relief, looking for a name. . .

14 months and four neurologists later, we went to Mayo's in Rochester and in 10 minutes the pediatrician gave our hell a name - POTS. we spent two days there for tests. we had an answer.
there was no cure, there would just be waiting and hoping some day soon she'd grow out of it.

it has not been easy. medication only partially helped with the symptoms. . . there were nerve blocks and drug studies that didn't relieve anything. a couple trips to the e.r. and a hospital stay this summer for stomach complications - but the headache has lessened a bit, and for that we are very thankful.

how people treat a child with POTS is really a lot like how children who are exceptionally tall for their age get treated - unfairly. a friend's daughter was commonly mistaken for being kindergarten age when she was only 3 because of her height. there is a big developmental gap between children who have started school and children who have started the tyrannical three's.
she was often wrongly chastised for behavior that is part of being three. a child may look five but be only three. a child with POTS may look "fine" but be anything but fine.

bottom line here. . . if your child is ill and exhibiting symptoms of POTS, read the abc report and contact the names and organizations listed at the bottom for more information. you owe it to your child.

after our child was diagnosed, we found the dysautonomia information network particularly helpful. great information and support for us and they were able to link up our daughter with other children with the syndrome. it helped - she found out she wasn't alone.