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Everything posted by airial95

  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
  16. Many foods have inflammatory properties, which can cause problems in PANDAS kids. Look at the book "Diet for a Pain Free Life" It's written to address people with inflammatory joint conditions to help them reduce inflammation/pain in their joints, but it's a great resource of information of foods that commonly cause inflammation.
  17. Antibiotics before and after the procedure for sure. If you haven't discussed PANDAS/PANS with your dentist already, I would. Our dentist automatically puts in the protocols for rheumatic fever patients when she sees our kids. (When my daughter had to have an emergency extraction done last week she insisted on a conference call with the pediatrician to discuss abx protocol to not interfere with what we are doing PANDAS-wise). I would also consider adding anti-inflammatories for a few days after to control inflammation that may occur from the release of bacteria. As for anesthesia, my
  18. It's important to remember that the "stats" you're quoting are based on a parent survey that was initially done by pandasnetwork, with a follow up survey a few years later. This is not based on any peer reviewed, double blind, scientific research.
  19. Unfortunately, there is a prevalence in siblings. Murphy published research indicating a high incidence in siblings (upwards of 60% I think, can't remember), particularly in families where there is a history of chronic strep, rheumatic fever, or autoimmune disease. The correlation was even more significant when the history was on the mother's side. If you are unsure, keep a daily log of your child's symptoms. At that age, it is often difficult to differentiate between PANDAS symptoms and a toddler testing their boundaries and typical developmentally appropriate stages. We kept a log g
  20. jenniferg - my son was diagnosed in 2010 at 2 years old, his onset was about 6 months prior to that. For 3 years we did abx (along with T&A), our issue was recurring strep. We would see steady improvement on the abx, and then he would get strep again (even on the abx.) The T&A brought him back to 100% immediately, but 6 weeks later he was + for strep again, so we were back to the beginning. We finally pulled the trigger on IVIG in Spring 2013. He got 5 from April 2013 through Christmas 2013 and the results were immediate, and astounding. He was 100% within 24 hours of the infusio
  21. Haven't read all of the responses, but having been through this for a while, I'll say this based on your initial post. If you feel PANDAS is part of the equation, definitely get a PANDAS doctor on board. You will not waste their time even if your child is not at their worst when you see them. They understand the waxing/waning of this condition better than anyone. It may take time to get into see the doctor of your choice, so keep that in mind. When choosing a PANDAS doctor, think about what your goal is. For example, are you looking for aggressive treatment? Are you looking for
  22. It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey. It was 5 years ago today that our doctor told us about PANDAS. It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria. It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a
  23. For my son the effect was immediate. Within 24 hours of finishing his first infusion he was 100%. Effects lasted about 7 weeks, and he was receiving infusions every 8 weeks for almost a year.
  24. A note about Dr. Murphy, she no longer sees patients herself, she is focusing solely on research. However, the team at the Rothman Center in St. Petersburg is very knowledgeable and she is still based there. From our experience, Dr. Megan Toufexis is the best one there still treating patients regularly. It is worth the trip, however Rothman is not considered very aggressive with treatment, they tend to be more conservative than other specialists. However, if you have a local doctor who is open minded to learning about PANDAS, Rothman will be able to confirm a diagnosis and help with di
  25. Get a prescription from your doctor for EMLA cream, it's a numbing cream that you put on the skin an hour before the poke and they don't feel a thing. Once they realize they won't feel it, it can help with the freak out factor.
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