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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 mood and health.....but I want to learn more about this....
  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. Not currently dehydrated, eating between 500-1000 cal/day under duress. C/o nausea, fear of vomiting, swallowing difficulty. Also poor disposition: grouchy, won't go outside. In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites). In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate. Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled. But I have trouble wrapping my brain around this concept. Can't reach dr. T yet. Can any of you school me in how this works? The histamine, mast cell, inflammation, genetics, mthfr..... Labs, diagnosis, treatment.... Thanks so much.
  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 they don't know what either is....so I wanted to go to the appt informed to be able to tell/suggest what we need. I am starting to give out the consensus paper that just came out last month in the journal of child and adolescent psychotherapy. it is an excellent paper. and it even mentions a lot about pain that pandas kids can get....they label it as fibromyalgia. but the only treatment they suggest is neurontin, which is a strong drug that basically dulls sensations and the person in general. we don't really want that. I suspect that there is an underlying inflammation or infection that has not been tested for or treated. it's just hard to find the right doctor to do all the right testing and treatments. all would have to be done at this children's hospital or over phone or email. I guess I will just have to accept this fate and change the appt so that I can gather the info I need before I go. I googled lifeway kefir and it does contain strep strains. do you know of any yogurt that does not? my son's pandas is quite mild so that I haven't really done too much in the way of dietary testing or elimination diets. should we get allergy testing? his immune panel was supposedly normal. but I imagine there is more that could be done. i don't believe he has been tested for mycoplasma, bartonella, babesia....
  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 since then has had what we believe is a fibromyalgic pain in his chest, which is constant and painful. do you have suggestions as to what infections to check him for? I understand that some tests need to be run by specialty clinics, but I don't know which tests and the laboratories that run them. I'm hoping to erradicate the chest pain by treating an underlying infection. He has had an endoscopy, ekg and echo that all are normal and had a trial of time without ibuprofen and zithromax. Nothing has helped this pain. This past weekend I did it again....gave him Lifeway Kefir milk that has strep strains. In a couple of hours he started to have tics, ocd and excruciating outer elbow pain to the point of crying and holding his uninjured arm (it's another pain point of fibromyalgia). so, any thoughts of how we should treat that?? a throat culture would not pick up the strep, he just ingested it! any tests needed or what antibiotic name, dose and duration would you suggest, he is 70 pounds. No one at Children's Hospital is pandas literate or even lyme literate that I have yet found, but they want to help us...they just don't know what to do....they likely will do as much as I suggest......suggestions????
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