looneymom Posted October 30, 2013 Report Share Posted October 30, 2013 Tyler saw the cardiologist yesterday and had an EKG and echo cardiogram. Everything was fine and it had been awhile since Tyler had one done. Tyler also had more blood work done for the PANDAS Research study. This blood work has to do with autoantibodies left over by rheumatic fever. Rheumatic fever can happen 3-4 weeks after a strep infection has occurred. It's symptoms can show up again after each new infection. This cannot only affect the heart, but it can affects the brain, blood vessels, nervous system, muscles, and joints. The doctor that is doing the PANDAS research and has found in kids with extremely high antibodies that are PANDAS, has come across something else. The infections these kids had are not all related to strep. Other infections and virus have been found. Tyler's past blood test have showed many different virus and infections.Tyler's antibodies are higher than the mean value of normal healthy kids that do not have PANDAS with vocal Tics. His testing is in the gray area, so PANDAS cannot be ruled out yet. The cardiologist and I are hoping the additional testing can nail his diagnosis down.However, I really want to know what symptoms did you experience when you had Rheumatic fever. When Tyler was younger, he would complain of chest pain and I did take him to the doctor, He would x-ray and Tyler's heart size was fine but he had terrible pain when his chest was pressed down. The doctor called this pleurisy. Could this be a symptom of Rheumatic Fever? I had forgotten about these episodes but I intend to mention them to the researcher and cardiologist. Tyler was taken to the emergency room and his pediatrician for this symptom many years ago.Rachel Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 30, 2013 Report Share Posted October 30, 2013 Hi Rachel,I was never dx'ed with rheumatic fever but I had strep repeatedly when I was a kid. In fact, my tonsil/adenoidectomy had to be rescheduled 4 times over the course of a year and a half between 3rd and 4th grade because I kept getting severe strep infections. I was also diagnosed with severe pleurisy when I was 12. They chalked that up to me working around livestock. I did have chest xrays at that time and they must not have found anything wrong with my heart but I remember my doc saying my pleura were very inflamed. It hurt to breathe on the inhale and especially on the exhale. Doc said the exhale is when the outer lung sticks to the pleural sack due to the inflammation and creates lesions as lung deflates (kind of like when you peel a band aid away from a wound that it is stuck to). It started with having pain each time I would fling my book bag onto my back. I also experienced some temporary asthma symptoms at the worst part of the pleurisy and that symptom remained for a few months after the pain disappeared. I don't know if that helps or not but I hope so. Take care.Katie Quote Link to comment Share on other sites More sharing options...
YolaInBlue Posted October 30, 2013 Report Share Posted October 30, 2013 I had rheumatic fever at 19. It left me with a damaged mitral valve. I was going undiagnosed for over 2 months, then spend a month in a hospital, then 2 months in another hospital and a full year on antibiotics. My biggest issue was vomiting and stomach pain. Everytime I have a strep throat infection I know, because I get the same pain. My family doctor at a time was insisting it was just anxiety, because it happened during college exams. She ignored my swollen feet and joints. I also had red, bumpy rash on legs and hands. I remember heart pain and general weakness, I was exhausted from just walking. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted October 31, 2013 Report Share Posted October 31, 2013 Hi Rachel,I had rheumatic fever at around the age of 10. My symptoms were fever, aches and pains, lethargy, sore throat, cough I believe. I don't remember if I had chest pain or not. I had pleuracy several years back which was chest pain to the extreme so I think I would have remembered that if I had experienced it along with the other rheumatic fever symptoms of so many years ago. I don't believe pleuracy is associated with rheumatic fever in any way and I was told would not necessarily show up on a chest x ray. In any event, as a result of having had rheumatic fever I was left with a very loud murmur and mitral valve regurgitation which has worsened over time to moderate mitral valve and moderate pulmonic valve regurgitation. I actually have a followup echo for that in a few weeks. Has Tyler had an echo cardiogram before ? I'm sorry Tyler is still not improving and answers are so slow in coming. Janet Quote Link to comment Share on other sites More sharing options...
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