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Found 2 results

  1. I found a couple of articles that might be of some interest to someone. Most of you know my son was dignosied with Postural Orthostatic Tachycradia Syndrome and his symptoms keep getting more severe after infections and viruses. Currently my son is doing plasmapharisis twice a week on an out patient basis. The treatment is not causing him to be worse or increasing any of his symptoms. I am beginning to see small changes. He is gaining some strength and he is able to do some physical therapy exercises. His tremors are less. Our doctor started him on some predisone this last week. His blood pressures have also improved. Our doctor has told us this could still be a very long haul for full recovery. Research does seem to be catching up to us. My son's last testing numbers on Cam Kinese was 243. The normal range for his age is 95 or below. http://circres.ahajournals.org/content/110/12/1661.full http://www.bioline.org.br/request?pe14052
  2. This last week my son caught strep throat again while on an antibiotic. The first time happened back in January. With some recent testing, some doctors are begining to suspect that my son had rheumatic fever when he was young. This testing is being done through some research studies and shows these antibodies have affected the heart. My son has also had testing in the past that showed elevated Anti- Dnase B Strep antibodies. Which I think this means he has had past infections in the past. I was told that it was not normal to be getting strep while on an antibiotic. So my son is going to getting a Penicillin shot every 3 weeks and he is also going to be getting monthly low dosage IVIG trestments. Our insurance has approved of the IVIG. The IVIG treatment will be done inpatient this weekend. Our cardiologist is in charge of the treatment. He is aware that my son has a low IGA. I can only think of a couple of times when this rheumatic fever might have happened. This problem is also caused by strep. If it does not get cleared up, does the strep hibernate in the body and caused the antibodies to build up? With this type of situation, I could see how this would affect blood pressure and heart rate. I am excited that my son is going to be doing the IVIG but I'm hoping it won't make his symptoms worse. I have explained to him that this is a possibility and that it may take several treatments before any progress is made. I am going to contine to work on his diet and his cardiologist is also interested in see his 23 and me test results. He also told me to go ahead and try P5P with my son at night to see if it will help with sleep issues. Since this strep infection started, he is having trouble getting to sleep.
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