I really hesitated creating this gofundme but so many have encouraged me to do so and I really appreciate all of your kindness! I will try and keep this brief about my son, Carter, who is now 19. He has a 14 yo brother Spencer who ADORES him, 23 yo brother Davis who likes him too (I think?! lol), and dad and I too!
Carter became sick completely out of the blue May 2013. He lost 33 lbs, had gastrointestinal problems, bradycardia, headaches, weakness, fatigue, chest pain, aches and pains, etc. We saw local doctors who thought maybe he was stressed, not eating well, etc. After exhausting our local physician community, we drove him to the CHOP ER Memorial weekend 2013. He was admitted for 13 days initially, was not allowed out of bed, eventually permitted to have wheelchair rides, not allowed to be alone AT ALL, tested, probed, prodded etc. Some of the lab tests were abnormal and a couple unusual findings on some of the scans but nothing that added up. Overall, he was healthy!! He was sent home on high calorie diet to gain weight. We followed up as an outpatient almost weekly at CHOP. It was frustrating since none of the providers "heard" him and kept pushing us into what they thought should be his problem. Eventually he was readmitted to CHOP for severe bradycardia and was not allowed to be discharged until his night time heart rate was at least 39!! Crazy. Fast forward over past 18 months, Carter continued to have severe health problems. He played Varsity golf since 9th grade but had to get permission from the PIAA to allow him to ride in a golf cart since he could not carry his bag and/or walk the course. We saw Cardiology (Dr Patel at Pinnacle Cardiology told him to get over it and stop focusing on how he is feeling), gastroenterology (at Hopkins) -said he has gastric dumping syndrome and severe constipation but no reason why, Neurology for headaches no explanation (stress?), Endocrinology (Dr said"if you think I am the one to figure this out, I am not, I don't have time for this"....Hearing how these doctors have reacted to Carter is unacceptable. I know he is not feeling well and I will not give up. He went to Penn State in State College as a freshman fall 2014 and it was very tough health-wise but he persisted. Unfortunately, his health has really taken a downturn and he had to take a leave of absence from Penn State this semester which is really tough mentally as well since all of his "buds" are still in college. As of now, he cannot stand for long since blood pools in his lower legs and does not return to his heart very well and he has started passing out. He has SEVERE chest pain and nothing helps the pain. A couple weeks ago he had a gi bug and got dehydrated and ended up in the Hershey Medical Center ER. His body is so sensitive to change and can be thrown out of whack very easily. Further, we took him to the ER Monday for the chest pain and the ER doctor said just give him Advil for a week and/or alternate with Tylenol. I told him we have been doing that and it is NOT helping so we are here. Well, we have excluded any serious medical emergency so there is no reason to keep him! I said his pain level is the same as when he came in and he wasn't even given an IV OR pain medicine. I am beyond weary of the medical field. I often say we need a lifeline to give us a glimmer of hope. Fortunately, I know how to navigate the system pretty well and keep going for answers. He had a tilt table test which determined he has an autonomic disorder which basically means his CNS and cardiovascular system are not communicating properly. For example, when he eats, his blood says "get to his digestive tract" and "forgets" that his head, arms, legs, etc need good blood supply as well. Upon standing, his blood goes to his lower legs and they turn color so then he is likely to pass out. The medications he has tried cause side effects that are worse than the symptoms they are treating and do not help regardless. Carter gets really fatigued, he lays down most of the day, does not drive anymore, cannot focus, has tunnel vision, nearly passes out when getting up, and his chest pain is relentless. For some reason, these patients with dysautonomia have chest pain that worsens at night so he cannot sleep well.
Within the past 1 1/2 weeks via my research, I have found a Dr. Arata in California who has been the innovator of a procedure to help patients like Carter to relieve their symptoms. I researched the physician, reviewed his research, articles, his credentials, boards, spoke to him, spoke to our family doctor, etc. and I am comfortable with taking Carter. I would have the procedure myself. We are hoping it will relieve a couple symptoms at least. Carter needs to be a normal teenager who can do the fun things and go back to college. He has been a trooper, rarely complains and never asks "why me?" Dad and I are so proud of him. Financially, our insurance is covering a portion of the procedure as an out of network provider but we have a large deductible, have to fly out to California and stay for several days as well in a hotel. We will be going Saturday March 21- March 26. Thank you again for a minimum your prayers.
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