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airial95 last won the day on May 18 2016

airial95 had the most liked content!

About airial95

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  1. Yes, negative for Lyme and all co-infections. Twice.
  2. The documentary has been in the works for about 2 years or so now. The Kennedy Center on the 19th is a fundraiser, I believe it is $200 per ticket. There will be a free screening on Saturday night for conference attendees. After that, the film will make the film festival rounds. Any sort of full release will likely happen sometime after that.
  3. My son has been on rifampin for years - only thing that keeps the strep at bay and its been huge for his recovery.
  4. Not Biaxin, but we have done a cocktail of Augmentin/Azith/Rifampin and Azith/Cefdinir/Rifampin for years. My son is on Azith/Rifampin long term (have never been able to get him off the rifampin without regression) but he still tests positive for strep a few times a year - which is when we add back the Augmentin - which usually does the trick. My daughter is on Azith/Cefdinir long term and we add rifampin when ever she tests postivie for strep (which is also a few times a year). Without the cocktail they are on, they both typically test positive for strep every 6-8 weeks or so...
  5. Yes it can be PANDAS/PANS this young. My son was 19 months old at onset - 26 months old at diagnosis. I've been on here since we first heard the term PANDAS in January 2010, so feel free to search my past posts for our journey. For us, it initially seemed like the "terrible twos" on steroids and continued to get worse until we feared our son was completely autistic after his 2nd birthday (he will be 9 in a couple of months - no signs of autism now). Our ped caught it early, and noticed the correlation of aggressive behavior with an impetigo infection he was treated for at 19 mont
  6. Were the parents in the class notified to tell the school when there is strep? We have a letter sent out at the beginning of the year (and repeated again when lots of strep shows up) that notifies the classroom parents that there is an immune compromised child in the class and they need to be notified if there is strep - we also list ALL of the other things caused by strep (scarlet fever, etc..) since most folks don't realize strep causes other illnesses. We found by providing that letter, most parents were cooperative. And while the letter is anonymous and doesn't identify my child, a
  7. Both of my kids have done the Rogers program, and it helped immensely. It is hard work, but it was amazing. The Tampa program is led by Dr. Eric Storch, who has published numerous papers on PANDAS and worked with Dr. Murphy at the Rothman Center at USF for years. He is still affiliated with USF, and many of the therapists at Rogers came over from the Rothman program. So they totally get PANDAS and understand it. I highly recommend it, we have done CBT off and on with my son almost since diagnosis, and while it's not a cure for PANDAS by any stretch of the imagination, what he has lea
  8. We have done weekly therapy at Rothman, as well as the Rogers 6 week program for both of our kids. In my son's case in particular, he tends to get strep every 8 weeks or so, so finding a time when things are "normal" is non-existent. The general idea is that you need to be addressing the medical side of it - abx, IVIG, anti-inflammatories, - whatever your approach is before really attempting CBT/ERP. There are (non-PANDAS) doctors who insist it's a first line treatment - but that's not true. Doing it without addressing the medical side is like throwing deck chairs off the titanic. Th
  9. Are you on Facebook? There is a Florida PANDAS Parents FB page that has a list of doctors in Florida. There are lots of folks on there from the East Coast that can help too. The link to request to join is https://www.facebook.com/groups/FloridaPANDAS/ I'm the admin so let me know if you request.
  10. We are in Tampa. Dr. Berger isn't associated with Rogers, he is a holistic pediatrician who is PANDAS knowledgeable, but not part of the program. We did the 6 week outpatient program for both of my kids last summer (7 and 9 at the time). It was great. Dr. Josh Nadeau who was previously at the Rothman Center had been my daughters therapist previously, and when he followed Dr. Storch over to Rogers from Rothman, we wanted to continue to work with him. They understand PANDAS very well, and the challenges it poses. They never once in the 6 weeks recommended any types of psych meds
  11. The international OCD Foundation has a lot of good information on what OCD looks like in kids, and I think they even have some resources for teachers. You may want to check there www.iocdf.org
  12. We used to do ibuprofen regularly. One day while my son was at football, he was spiraling fast. I reached into my glove box, but my bottle of ibuprofen was empty, but I did have a bottle of naproxen. Knowing it was an anti-inflammatory, I said what the , and gave it a try - we were in a pinch. The effect was more immediate, and even better than the ibuprofen. My daughter still does better on ibuprofen, but my son has better results with naproxen.
  13. My kids are a bit younger (DD9, DS7), but we are across the bay in Tampa if you are still down. Are you doing the intensive OCD program, or just appointments with the clinic?
  14. Dr. Ramos and Dr. Nadeau also went over from Rothman to Rogers. They are still associated with USF however, so the programs are still somehow interconnected - not sure how. We opted to go for Rogers because my daughter had previously seen Dr. Nadeau on a weekly basis, and she was comfortable with him. It is an entirely out-patient program. They have two levels of treatment, one is the afternoon program (3 hours each day M-F) which is what my kids did, and they also have a full day program as well. They have an eating disorder clinic too. One side is for adults, and the other is for k
  15. Rothman/USF is local for us, so we have gone there since the beginning of our kids journey. I will say that the therapy ERP/CBT portion of our treatment protocol has been just as important as everything else. It sounds like your daughter is doing better with the medical treatments, and that's critical to ERP/CBT being successful. You have to be addressing the immune response and inflammation or it won't work as well, we're not just dealing with regular OCD. But your LLMD is correct about OCD causing "bad habits" - for lack of a better phrase. It was explained to us like this by
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