PANDAS – 6 Questions Parents Must Know

2 Answers

These messages are for mutual support and information sharing only. Always consult your doctor before trying anything you read here.
When he was 8 years old, during the spring, we took our son (who is now 34 years old) numerous times to the pediatrician numerous times during a 2 week span. He would scream complaining of a severe headache & vomiting regularly; we were informed it was probably just a virus.  One night his symptoms  became so severe that we took him to the er . His urine was tea colored & his hands were swollen. Another child, with a genetic defect was being treated in the curtained cubicle next door. All medical personnelle  were focused on the child next door. Our son was given an IV and sent home. His symptoms continued for another week. Eventually a pediatrician sat down & told us he was going to find out what was wrong with our child. Blood tests revealed he had post streptococcal glomerilonephritis. ( excuse any incorrect spelling, we are not in the medical field) later that spring our son started limping & was placed in a wheelchair for 2 weeks. The pediatrician diagnosed him with a virus in his hip joint. After watching a show Mystery Diagnosis dealing with PANDAS, I now have no doubt that the Synervitis.... my son suffered from was a result of strep bacteria and not a virus. That spring he also began suffering  from tics, hyperactivity and bed wetting. The next fall he was diagnosed with asthma and allergic rhyonitis. We are not stupid. We are caring vigilant parents. Our child suffered terribly due to different physicians checking him each time we returned for help, Miss diagnosis, and insufficient tests to  reveal his illness. His throat was never sore. Can anything be done now to improve his health?  He suffers from chronic  sinus problems, migraines, frequent mood changes. He is super intelligent but he has physical  pain due to the misdiagnosed strep(PANDAS) in the 3rd grade.
I am very sorry to hear from you about you complex situation. All of these disease can be caused by same reason or differerent. Since it have happened, you should consult with professionals.
When my son was 2 he went from a normal happy boy to a raging lil boy I was very fearful because nothing my husband or I did helped and I was pregnant at the time it finally got so bad we had to put him in a mental hospital twice because he was even going after cops if they had to be called. The state got involved and he got put in foster care because he was uncontrollable and now he’s almost 8 and we still have a lot of the same problems and I really don’t know how to help me and I’m scared for him. I just want my happy little boy back. Can someone please tell me what to do?
Hi, I'm not a doctor but a mom, I don't know how to treat but let me share you this. My son has autism, I was under huge pressure since then. He was always like a piece of wood, my heart was broken. But I wanted to help him. I read a lot of books about autism, I consulted a few doctors and therapist, and I started to train him at home. It was hard, and I did some terrible things, but in 5 years, he has improved huge. If you want to help, learn about the disease, learn about the therapy, try to help. Remeber you're a mom.
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