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  1. can someone help me wrap my brain around these topics or point me in a direction of material that will help me with this. my 9 yr old son has had pandas for 5 years. Dr. T has said that he probably is low histamine. He surmised this for the fact that when my son had a food refusal pandas flare last summer the one thing that my son responded well to was caffeine. So that led Dr. Trifiletti to believe that my son is low histamine. My son had a flare this past week where he didn't want to eat much and so I went to caffeine (mt dew, cola, chocolate) and these things seemed to improve his mo
  2. Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds.
  3. thanks everyone for the feedback....I thought I would have a one hour appt with a pandas nurse practitioner via phone (I'm in Madison, WI, she's in California) before my son sees a special doctor next week (non-pandas literate) but the appt was given to me because I complained to the Children's Hospital that noone there seems qualified to help us. I guess I should delay that appt....it's just I am sick that my son continues with this chest pain....but a couple more weeks might be worth it. I really want our children's hospital to do the proper testing and the proper treatment, it's just that
  4. sure, I appreciate your response....trigger to inflammation but not necessarily infection....what would reduce inflammation at this point that would take away his chest pain? a rheumatologist recently ran an immunology panel (regular panel, not one specially for pandas kids) and she said that all of the results were normal.... he's taken plenty of ibuprofen in the past months....steroids needed? not sure what is needed....
  5. Hello, I already know a lot about pandas, my son has had pandas for 3 years and I'm a nurse practitioner but I have an appt next week with a non-pandas specialist next week for my son. We have a couple of issues that they might be able to help us with, but I need pandas experts advice. History: my 7 year old son was quickly diagnosed 3 years ago with pandas from a strep infection. His case is mild and treated with a weekly dose of Zithromax 500mg. New issue: In June I gave him his first probiotics (cheap brand...must have had strep strains) and he started with strange rages, ocd and
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