Search the Community
Showing results for tags 'pots'.
This just popped up in my feed via MentalFloss. New researching finding a genetic link between these three, "rare" but increasingly prevalent auto-immune conditions. Science marches on. http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases
Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015. In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain. In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015. In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out. Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon. My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.