MAYO CLINIC FOR OLIVIA RALSTON
Donation protected
Many of our friends and some family have not known that in 2014, my daughter, Olivia, suddenly became very ill with daily headaches, overwhelming fatigue and lack of energy, muscle and joint pain, inability to sleep, racing and irregular heartbeat, difficulty with focus, concentration, memory and comprehension, dizziness, nausea and digestive problems, sensitivity to lights, sound and movement, and low blood pressure, just to name a few. At the time she was an active, busy teen playing on a local softball team, taking voice lessons, going to the beach, spending time with her friends, attending summer camp, participating in youth group activities, and homeschooling.
In a matter of weeks, she was unable to do any of these things and became mostly house-bound and sometimes bed-bound. If you ever wondered why suddenly you saw less of Olivia at church, youth group or friend gatherings, this is why. We dropped off the grid for a while. All our time was spent taking her to doctors and specialists that sent her for test after test after test. Nothing we discovered or tried made any difference. One day, her pediatrician, tested her heart rate lying down, sitting and standing, and suspected that she had Postural Orthostatic Tachycardia Syndrome (POTS). He sent us to a pediatric cardiologist in Tampa who used his expertise and testing to give us a definite diagnosis of POTS. Under his care, we began the standard medications for POTS but found they only seemed to create more symptoms and side effects, and she could not tolerate some of the treatments at all.
The summer of 2015, we moved to Arizona and began to search for new doctors and treatment. Olivia began to work with a trainer for physical therapy to increase her circulation and raise her blood pressure. She also received bags of saline and mineral infusions. We found a naturopath that helped her with a specialized diet and supplements that her blood and genetic testing showed she needed. She seemed to improve somewhat and was able to move more and get out of the house, but most of the symptoms persisted just at a lower intensity or clustered in a nasty flare-up of symptoms that would last a few weeks to a month. Then in 2017, she had an emergency appendectomy. This episode and all the drugs and meds for the ER and surgery and recovery put her body in a tailspin. Her recovery was very complicated and slow, and she was again house-bound and bed-bound for long periods of time and unable to work again consistently with her trainer until a year later. Two years later, the POTS symptoms are worse than ever, and we had to find a Cardiac Electrophysiologist in Phoenix to try new meds.
Olivia is now 19 and should have graduated from high school two years ago. She has missed many days and weeks of home school due to her illness. She has missed most of the fun and normalcy of her teenage years not having friends or youth group, being isolated here at home. She has felt like giving up on life completely so many times but is close to finally finishing her high school education. She really wants to attend college and be able to live on her own. She has dreams and goals like any young woman her age, but she is too sick to carry them out.
Mayo Clinic in Scottsdale has a POTS Clinic headed up by one of the top POTS doctors in the country. He has evaluated and treated many patients like Olivia. A regular GP and most other specialists do not have the knowledge and training to deal with this illness. We have exhausted our doctors and resources, and Mayo is where we need to be. We did not pursue Mayo sooner due to the long waiting list (it took six months for us to be accepted for an appointment), and the expense. We need to get further testing and evaluation to determine if POTS is the true cause of her illness or if it is secondary to another condition like Lupus that one of her doctors recently suggested. Because her symptoms are debilitating, we need a treatment plan that will help her get some semblance of a normal, functioning life.
Her initial appointments are set for May 21, 22 and June 7 for a follow-up. We will be driving the two hours to Phoenix and staying overnight. We are asking any friends or family that feel moved to contribute to the 3 Mayo appointments, consultations, testing, and treatment to do so through our GO FUND ME account. We have never done this before, but we have no other resources to pay for the specialized doctors and services at Mayo. Our heart's desire is that she can be strong and healthy again!! Other encouragement by text, email and prayer is greatly appreciated. Thank you for taking the time to read this and for whatever support you are able to offer.
Please read here to find out more about Postural Orthostatic Tachycardia Syndrome
http://www.dysautonomiainternational.org/page.php?ID=30
http://www.dysautonomiainternational.org/pdf/
SummaryOfPosturalOrthostaticTachycardiaSyndrome.pdf
In a matter of weeks, she was unable to do any of these things and became mostly house-bound and sometimes bed-bound. If you ever wondered why suddenly you saw less of Olivia at church, youth group or friend gatherings, this is why. We dropped off the grid for a while. All our time was spent taking her to doctors and specialists that sent her for test after test after test. Nothing we discovered or tried made any difference. One day, her pediatrician, tested her heart rate lying down, sitting and standing, and suspected that she had Postural Orthostatic Tachycardia Syndrome (POTS). He sent us to a pediatric cardiologist in Tampa who used his expertise and testing to give us a definite diagnosis of POTS. Under his care, we began the standard medications for POTS but found they only seemed to create more symptoms and side effects, and she could not tolerate some of the treatments at all.
The summer of 2015, we moved to Arizona and began to search for new doctors and treatment. Olivia began to work with a trainer for physical therapy to increase her circulation and raise her blood pressure. She also received bags of saline and mineral infusions. We found a naturopath that helped her with a specialized diet and supplements that her blood and genetic testing showed she needed. She seemed to improve somewhat and was able to move more and get out of the house, but most of the symptoms persisted just at a lower intensity or clustered in a nasty flare-up of symptoms that would last a few weeks to a month. Then in 2017, she had an emergency appendectomy. This episode and all the drugs and meds for the ER and surgery and recovery put her body in a tailspin. Her recovery was very complicated and slow, and she was again house-bound and bed-bound for long periods of time and unable to work again consistently with her trainer until a year later. Two years later, the POTS symptoms are worse than ever, and we had to find a Cardiac Electrophysiologist in Phoenix to try new meds.
Olivia is now 19 and should have graduated from high school two years ago. She has missed many days and weeks of home school due to her illness. She has missed most of the fun and normalcy of her teenage years not having friends or youth group, being isolated here at home. She has felt like giving up on life completely so many times but is close to finally finishing her high school education. She really wants to attend college and be able to live on her own. She has dreams and goals like any young woman her age, but she is too sick to carry them out.
Mayo Clinic in Scottsdale has a POTS Clinic headed up by one of the top POTS doctors in the country. He has evaluated and treated many patients like Olivia. A regular GP and most other specialists do not have the knowledge and training to deal with this illness. We have exhausted our doctors and resources, and Mayo is where we need to be. We did not pursue Mayo sooner due to the long waiting list (it took six months for us to be accepted for an appointment), and the expense. We need to get further testing and evaluation to determine if POTS is the true cause of her illness or if it is secondary to another condition like Lupus that one of her doctors recently suggested. Because her symptoms are debilitating, we need a treatment plan that will help her get some semblance of a normal, functioning life.
Her initial appointments are set for May 21, 22 and June 7 for a follow-up. We will be driving the two hours to Phoenix and staying overnight. We are asking any friends or family that feel moved to contribute to the 3 Mayo appointments, consultations, testing, and treatment to do so through our GO FUND ME account. We have never done this before, but we have no other resources to pay for the specialized doctors and services at Mayo. Our heart's desire is that she can be strong and healthy again!! Other encouragement by text, email and prayer is greatly appreciated. Thank you for taking the time to read this and for whatever support you are able to offer.
Please read here to find out more about Postural Orthostatic Tachycardia Syndrome
http://www.dysautonomiainternational.org/page.php?ID=30
http://www.dysautonomiainternational.org/pdf/
SummaryOfPosturalOrthostaticTachycardiaSyndrome.pdf
Organiser
Robin Ralston
Organiser
Prescott, AZ