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Hello, This is my first post, but I have been lurking here since April when we started putting together that our 7 year old ds' symptoms was more than just misbehavior. Working backwards, I believe that the inciting event was over a year ago about a month before he turned 6. He was diagnosed with both strep and impetigo, had a horrible rash and was put on amoxicilan and mupirocin. The next day his behavior shifted drastically. He was not himself. I scolded him for being mean to his younger sibling and he cut off a chunk of his hair. He was in a ridiculous state after, laughing uncontrollably and inappropriately. Making crazy faces. Dark mood. Didn't seem to care about any consequences. Overtime things improved, but this winter he had multi[;e strep infections in a row and his symptoms escalated. His math skills declined, his handwriting got worse (messier and drifting). My son who is normally empathetic, kind, introspective and a rule follower, is like a different person when he's infected, he's in this state he doesn't make eye contact (he normally does in conversation), there's a sort of wild look in his eyes, has trouble managing even the smallest disappointment, increased anxiety, rages, sometimes restricted eating--says he's not hungry. Rarely eats much for breakfast. Has a fear of trying new things (even foods he's had liked before.) I could go on and on. Things have largely improved since his 3 course of amoxicillan in a row. He's had a few minor flares that we haven't been able to figure out the trigger of--allergies? overheating? his younger sibling being sick with a fever? We are awaiting his blood work and the results of his EEG, but the partial panel that we did showed elevated strep titers and the sleep study that we completed showed sleep apnea. His tonsils are constantly swollen so we are pursuing an tonsillectomy, adenoidectomy. Since his symptoms are largely better right now the neurologist we're seeing, who specializes in PANDAs, said she doesn't want to put him on a long term course of antibiotics to avoid him developing a resistance but I'm worried about him not having antibiotics before and after the surgery. If you have pursued the T&A procedure, can you please share what you did re: antibiotics? And anything else you wish you had known when you started this journey. Thank you for taking the time to read this. -
Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/
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Hello, I live in Nova Scotia Canada & my 11-year-old son is scheduled for a tonsillectomy in September and I was wondering if anyone knew of a physician recommended ABX treatment protocol for pre & post surgery? My son has been dx with PANS 5 years ago and we are hoping that the surgery can help reduce the frequency of flares. The ENT plans on giving him IV ABX during surgery along with a 2 week supply of ABX to take after the surgery. I remember reading something about a specific ABX protocol to follow before and after surgery but can't seem to track down that information now. My son takes prophylactic ABX regularly but I was wondering if he should be bumped up to a treatment dose 10 days before the surgery as well. Any information you can provide would be helpful. Thanks.
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Amazingly, our ENT surgeon here in Ontario has been receptive to our discussion of pandas with relation to our Son's upcoming tonsil and adenoid surgery. She is going to prescribe abx following the surgery and when I asked if she could culture the tonsils she said "Sure, but please provide me with a list of what to check." So, I need a list!! His surgery is this upcoming Tuesday and here's what I have so far: Streptococcus - Group A Beta-hemolytic Borrelia burgdorferi Bartonella henselae Bartonella quintana Babesia microti Babesia duncani Mycoplasma pneumonia Mycoplasma fermentans Ehrlichia chaffeensis Coxiella burnetii If viruses can be cultured: Coxsackie A HHV-6 Any other suggestions would be appreciated. Hopefully this will provide some relief to his OCD.
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DS, 14, had an adenotonsillectomy yesterday. He came through the procedure very well and we are keeping him on pain meds and fluids as much as possible. He had a sinus infection at the same time, but they went ahead with surgery. He is not allowed to blow his nose for two weeks. He dug out the nastiest blob of gunk-TMI-but I am sleep deprived and now he feels much better. Hand sanitizer any one???? Doctor said his tonsils were cryptic and that he tonsilloliths deep in the folds. That could be the source of the biofilms and bacteria. EWWWWW. We won't know for a couple of days what the pathology report states. Are there any signs of improvement I should look for?? I'm almost not daring to hope...
