We immediately started taking Gavin to Doctors and had multiple trips to the E.R. to try figure out what was wrong. We took Gavin to numerous doctors to include nephrologists, cardiologist, gastroenterologist, endocrinologist and several other specialists no result. After a year and a half had passed with no diagnosis we were referred to Dr. Oakley at UW Medical. He diagnosed Gavin with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). Dr. Oakley explained to us that when Gavin had gotten mono the summer of 2012 it caused his body’s nervous system to attack itself. Gavin’s nervous system tried to heal itself but instead his nervous system went into overdrive, damaging the nervous system and his heart. This resulted in the symptoms listed above.
We discovered that this can happen to anyone that gets sick with mono, flu and other sickness. Women predominantly get P.O.T.S. and while pregnant. The symptoms for men and women range from feeling fatigued to being wheel chair bound and having seizures. Dr. Oakley explained Gavin will have P.O.T.S for the rest of his life. He shared that each individual heals differently or could get worse. He explained that he doesn’t know the time frame, how long it will take, or if Gavin will get better.
With this diagnosis it put Gavin on a high dose of high blood pressure medication, which has stopped his blacking out and excessive sleeping. He is also on salt supplements to help with the severe dehydration. He takes other prescriptions to try and help his memory. Even with all the medications Gavin still feels sick everyday and is unable to go to school, have a job, hang out with friends and has serious memory problems. We are currently dealing with insurance not wanting to authorize additional testing and coverage. We also are waiting for a court date for SS benefits they are denying Gavin SS benefits because the main medical field is so unfamiliar with P.O.T.S. therefore denied benefits due to the lack of understanding. We are unsure of the outcome for Gavin and how long it may take for his nervous system to heal or if he will never be normal again.
Since there are very limited treatments to help with this condition we want to do whatever we can for Gavin. We discovered the P.O.T.S. Treatment Center in Dallas TX. This center does biofeedback, heart rate training, nutrition and exercise protocols and counseling. We have hopes that this program may relieve Gavin of some of his symptoms. We won’t know how much this may help Gavin until he goes through the process. Everyone’s results vary depending on how their body reacts to the treatment. The only thing holding us from moving forward is the cost. Insurance will not cover the cost for the two week program. The program goes Monday through Friday for approximately three hours a day. The program cost is $5500.00 with a $500.00 deposit. We also need airfare for Gavin and a parent (approximately $800.00). Gavin’s grandmother and grandfather live nearby and will provide housing, food and transportation to the Treatment Center. We are asking for approximately $7,000 to cover the cost and any incidentals.
We are so proud of Gavin and how strong he has been through all of this. He has missed out on so many little things and big things in the past few years. He has an upbeat positive attitude with everything that he has been through and keeps his faith strong in God, knowing God has a reason for everything. As Gavin says” life is short here on earth and it may suck but I know I will live forever in heaven and have no pain or sickness.” Gavin’s main goal in life is to get married and have a family. We have high hopes that this can be a reality for Gavin one day and hope you will find it in your hearts to assist.
We would also appreciate any prayers of healing for Gavin as well. Thank you again and God bless.
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