tk1234

parents, wondering if anybody gives both alleve and curcumin during a flare. western med doc concerned about potential for bleeding in terms of combining both; integrative doc saying he is not concerned about any negative interaction effect. if anybody has experience or knowledge about this question would greatly appreciate hearing....thank you!

agreeing with NYCMom. My understanding from seriously educated warrior moms is that especially for the first year or two priority number one is protecting as much as possible against inflammation....so avoiding flares. Our 7 year old responded quickly too to medication after her big onset--I've kept her on now for an additional 1.5 years for this reason with the support of several of the specialists who are saying the same thing as your treater. will need to revisit the question at the 2.5 year mark. We do probiotics and curcumin for inflammation. For what it's worth, know visible sign of GI distress so far as a result of antibiotics. This is a disease of such difficult choices to make as parents......as you well know. your question is a great one. I hope these shared experiences help. Sending you all the best.

I wonder whether one of the docs could consult Dr. Najjar to rule that set of concerns out. When he spoke at the beginning of the month at the Common Threads conference it was clear that ultimately, like pans, pandas some cases of encephalitis are ultimately clinical diagnoses like PANS/PANDAS. He explained that in a not insignificant number of cases, antibodies don't get elevated and one must take the entire clinical picture into account. I am wishing you all the best.

Hi amazing parents, Can anybody in the Boston area give me names of docs in the Boston area who are willing to do IVIG and IV steroids for PANDAS/PANS? Been trying to locate docs that could do this for my dd if necessary and coming up empty. Thank you for any potential suggestions or leads.

Bobh, thank you this is helpful. I'm grateful for your presence on this board!

Hello amazing Forum, On here daily learning from you and feeling less alone. We are making our way through our first winter with PANS. my 6 year old has been doing well on Keflex prophylactically. In December, we noticed that our daughter started peeing slightly more. So instead of 4-6 times a day, more like 7-8 times. On several occasions, she would pee back-to-back....like 3 times in in an hour and a half. She would hold her crotch and occasionally say "I have to pee so badly". A few times she'd sit on the toilet and nothing would come out. All of this is a deviation for her. We put her on alleve for a month. The overall number of times per day she went stayed the same, but we saw a decrease in going multiple times in 90 minutes and she didn't mention the feeling of having to "pee so badly". We just took her off the alleve to see where things were. On day 6, she is again saying "I feel like I have to pee", but now she's getting distracted and then can usually hold it for a while longer. I am wondering whether any other parents out there have had this milder version of urinary frequency present? My gut tells me it's a symptom. And if so, did you use alleve, do a 3-day course of steroid, or just wait and watch? I would so appreciate anybody weighing in with their experiences or any wise thoughts.

thank you so much for your replies!

New to this forum. 6-year-old on Keflex since March. Is there such a thing as too much probiotic? She is tolerating Culturelle and Florastor 1x/day each for a total of 10 billion CFUs. Saw Amy Smith's talk online in which she recommends 25-50 billion to protect the gut. Could you experienced parents weigh in and share what you are doing? With gratitude...