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15 year old Granddaughter with blood pressure drop

Posted by @forest in About Kids & Teens, Mar 22, 2012

My granddaughter has not felt well for the last 3 years. She has experienced breathing problems, extreme drops in blood pressure, temporary loss of most of the vision in one eye, and many different types of body aches and pains. She has been to 9 different specialists, and been diagnosed as a celiac (gluten free diet), and enlarged lymph glands in the stomach area. None of this has resulted in any change in her health though. We are trying to get her into the diagnostic clinic in Rochester Mayo, but she is on a year long waiting list. Does anyone have any ideas on how to get her an appointment any sooner?


Posted by @jude59, Mar 23, 2012

I know of 2 teens with this same issue, diagnosed and successfully treated, within the past few years. You are looking at POTS.You can read about it in Wikpedia. My cousin took her son to Childrens Hospital,connected to United, in St Paul, MN. It is somewhat difficult to diagnose, but you dont have to wait for a year! God be with you.


Posted by @forest, Mar 23, 2012

She has already been looked at for POTS, and they have decided she doesn't have that. The Children's Hospital in St. Paul was one of the first places we took her to, and they couldn't give us a diagnosis.


Posted by @tramara1, Apr 19, 2012

Is this problem noticeable when she is lying down. The reason I am asking is because my mother suffered with something very similiar when she was in a nursing facility..the symptoms were only visible when sitting upright.. You will be in our prayers..


Posted by @forest, Apr 19, 2012

Thanks. No, she can get the symptoms in about any position or time of the day.


Posted by @lorrainedunlop, Jun 4, 2012

We are in Canada. My son has been suffering for over two years a specialist last year told me POTS was only when a person stands up and as he was having dizzy spells, lose of vision and sometimes hearing at any time of day and in any position they decided to do multiple tests and he has seen many specialists. After all this time they say they don't know what is causing all of his symptoms which started after a huge growth spurt at age 12. After reading POTS info I am convinced this is what is wrong with him as they all kept talking about how his blood pressure was dropping but nobody took his heart rate... he has had symptoms that also resemble a heart attack. I noticed also that he overheats very easily and suffers from excessive thirst and shortness of breath when the climate is hot.

Sorry didn't answer your question of how to get in quicker. My friends here have suggested we travel from Canada to the Mayo just to get a diagnosis...


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