My daughter has given me permission to write this post. Iv pictures are included incase you have needle issues*
Three years ago my daughter became ill. We took her to Doctor after Doctor up until this past January when she was diagnosed with POTS.
Postural Orthostatic Tachycardia.
Taken from the NIH and rare diseases information center:
“Postural orthostatic tachycardia syndrome (POTS) is a rare condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position (orthostatic intolerance). Orthostatic Intolerance causes lightheadedness or fainting that can be eased by lying back down. In people with POTS, these symptoms are also accompanied by a rapid increase in heart rate. Although POTS can affect men and women of all ages, most cases are diagnosed in women between the ages of 15 and 50. The cause of POTS is unknown. However, episodes often begin after major surgery, trauma, or a viral illness. In women, episodes may also begin after pregnancy and the symptoms may worsen or the number of episodes may increase right before menstruation. The goal of treatment is to increase blood flow and improve circulatory problems that may be causing POTS.
Last updated: 1/23/2017
Postural orthostatic tachycardia syndrome (POTS) is characterized by orthostatic intolerance and a rapid increase in heart rate.
Other symptoms reported in POTS include the following:
Blurry vision and other eye problems.
Gastrointestinal symptoms (for example, nausea, cramps, bloating, constipation, diarrhea).
Shortness of breath.
Head, neck and chest discomfort.
Last updated: 1/21/2017″
That is quite a lot of symptoms right? That is only one website. Many others have dizziness, tremors and many more. So at first you start with fatigue, maybe it is chronic fatigue syndrome and you see an immunologist/rheumatologist Then you move to weakness, does she have the same muscle disease I do, so we see one neurologist. Then you go to GI issues, and have five billion tests run to exclude everything known to man. Then you go to blurry vision, you go see an Opthamologist. Then there are the tremors, so you go through five million more tests by another neurologist. Dizziness, ENT and five million more tests. Finally after years of testing ,the Mayo clinic for a week that reruns most of the tests but adds a few more, and says POTS it is. Final answer.
There are not many choices of the treatment for POTS other than the gamut of meds that slow the heart rate, stabilize blood pressure, and build blood volume. Most have side effects that are intolerable.
Here is the problem with all of this information IT DOES NOTHING. It gives a diagnosis and symptoms but not much more than that. It is a diagnosis of a pat on the back and good luck with trying to get better. Oh there are clinics you can go to if you happen to be a millionaire and have 3 months to up and travel, which none of us do or can. My daughter has a list of symptoms with out a definite cause without a definite solution. So yes, we have tried acupuncture. We have tried acupressure. We have tried everything you could possibly throw out at me. I’ve had 3 years to research it, pour over her records, and since I am home with her 24/7, all I have is time. Most of the time I know more than the doctors we have seen.
Three years is a very long time for a child to be sick. As her parent, my heart breaks on a daily basis. Some days I have no idea if my heart able to handle any more of the break.
When you get sick, your buddies hang in there for awhile. Then if you don’t get better they start droppping off. The cards stop, the visits and calls stop, they start getting frustrated that you can’t go out. This has happened to her.
She is also very fortunate to have a few best friends that love her. She also has a few of my friends that continue to love and support her. Her dance teacher from 10 years ago sends her cards in the mail and has not stopped the entire time she has been sick. A friend of mine sends her care packages. She knows she is loved. But chronic illness is very isolating. It is very scary. It is very lonely.
We recently have encorporated a nutritionist into the plan. She is wonderful. This has helped emmensely because my daughter has been let down by many in the medical field and this finally is giving her hope.
She has experienced much loss. Many friends have left. Many Doctors have doubted her, questioned her, thought she was exaggerating, and minimized the severity of her illness.
My advice to all the moms and dads out there is don’t give up. You may be the only advocate your child has. You may be the only companion your child has. Your child may lose every friend, they may lose all that was once normal to them. Be their advocate. Fight for them. Push the doctors, don’t accept disbelief or doubt from the doctors. Validate.
IV fluids will help and have helped when our daughter’s heart rate becomes too high. All we can do is take her to the ER. And we have. 31 times. They pump her full of fluid, stabilize her, then we go home. During all of this my family left. They chose a very bad time to decide I was nolonger important in their life because while doing that they left my little girl. It was a loss she did not deserve as she was laying in a hospital bed. As parents we want to protect our children, fix their illnesses, find answers, get them well. We cannot always do that. So we love. We sit by their side. We listen. We let them know that no matter what we will never give up. Ever. These illnesses are chronic and called invisible because no one outside of immediate family knows what we go through, what she goes through on a daily basis. I wish they did. Hey at least she had a sweet dog that never left her side and two parents that will never give up on her.(unfortunately in the midst of all of this she needed her gallbladder removed, sweet molly, her dog, kept close watch)