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airial95 last won the day on May 18 2016

airial95 had the most liked content!

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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 months and considered PANDAS immediately. We were lucky. No everyone is that lucky. I echo Nancy's thoughts, consider a specialist ASAP. Not sure where you are, but Dr. Murphy at the Rothman Center in Tampa confirmed our pediatricians diagnosis immediately, so she has seen it this young (even published a case study on my son as being the outlier on the age criteria). Is she on a new antibiotic from what worked the last time? Also, try giving her ibuprofen - standard dose for her weight/age. If that helps with the symptoms, it's a good indicator that you're dealing with inflammation and PANDAS/PANS.
  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, as the year progresses (and I'm not shy talking about PANDAS!) most class moms know it's us and start to reach out to me directly - which is helpful. That being said, our principal this year never sent out the notices and we weren't getting notified as often - but thanks to parents who knew us, they were still reaching out... And as for the advocate- I agree. We have had to hire an attorney to deal with our principal (school district is great, teachers are awesome, principal is a piece of work).
  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 learned through CBT, and the Rogers program last summer, helps him tremendously with each new flare and has helped keep him functional when he is at his worst.
  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. That being said, if we waited for all of the infectious side to be completely "normal" - we'd still be waiting - 7 years later. It just doesn't happen for him. But we have been successful with CBT/ERP. Does it prevent the OCD from coming back in a subsequent flare? I wish, but sadly no. However it does give everyone involved tools to use to help manage the anxiety. It gave my son (at a very young age when he started CBT) a vocabulary to use to let us know when things were going wrong. Years later, he still refers to his OCD as "Harvey" - even though he's older and has a better understanding of what's happening. He could tell us "Harvey was bothering him" and we would know what to do. The Rogers program specifically also has a group element to it. This helped my daughter immeasurably. It really helped her to see that other kids were going through the same thing, and even some of them had the same triggers/fears as she did. It was especially uplifting for her when in about her 4th week there a new patient joined our group - and it ended up being a boy she went to pre-school with, we hadn't seen him or his family in years - but they remembered each other and it gave them extra incentive to work hard. It was great. Rogers helped with my son's sensory issues too. And for some of the anxieties and fears - it's not always trying to find out "why" they have them or to talk themselves out of them - because sometimes even they don't know, but how to respond to them. For example - my son gets very anxious at mealtimes when in a flare - to the point where he will completely stop eating. We still don't know why (not contamination, not choking fears, no clue) - but we did know that certain things tended to set him off the charts with anxiety - food touching, "broken" food (ie - cracked granola bar), or food in the wrong quantities. Rather than trying to talk to him about why these things made him anxious, and how unreasonable it really was. They simply focused on the anxiety reaction. For example - they handed him a granola bar that was crushed in the wrapper (he couldn't see it was broken but you knew it was from looking/touching the package). He had to sit at the table with that broken granola bar in the wrapper for 10 seconds, 30 seconds, slowly increasing time until he could do it for a full 5 minutes. The next step was sitting with the open broken granola bar - again increasing time until he could sit there for 5 minutes. Next step was touching it, again, until he could hold it for a certain period of time. Eventually after the end of the 6 weeks - he could eat the broken granola bar. This worked for his sensory issues too. He had to put socks on and keep them on for 10 seconds, continually increasing. Prior to Rogers, he couldn't put his socks and shoes on himself because of the sensory issues - now he does it himself all the time. Does he hits snags with new infections/flares - absolutely - but we know how to handle it and what to do because of what we learned. The other benefit of Rogers (personally) is that their program is family based. The entire family (if possible) participates so when you are done everyone is on the same page. CBT/ERP is not a replacement for medical treatment of PANDAS/PANS - but it is a useful tool. After 7 years on this roller coaster, even when my son has an active strep infection he is far more functional than expected because of the tools we gained through CBT/ERP.
  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 - strictly therapy techniques. It's a very interactive process where the kids work with lots of people and other kids with similar issues. I think that really helped my daughter a lot to see that there were others like her. We worked with Dr. Becky and she was wonderful. It really was a great experience, but it's tough - they really push the kids, but in a good way.
  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 kids - the two areas are separated. You start every day at group check-in, the other kids in the program at the time with their families all come together in a room and go over each individual's homework from the previous night and how it went. At first I wasn't sure how I felt about it, but it ended up being great for my kids to see that there are others that deal with similar issues. The Dr. then assigns tasks to each child/family (yes, depending on the issues and age of the child you are involved!!) to start with, and then they go around and meet individually with each kid/family and guide exposures go over progress, etc... It's really very interactive. Everyone in that office gets involved. My son has a hard time if others don't do things exactly as he wants them to. One of his exposures was to go around the office and ask people to play games with him. Everyone in the office was pre-notified that he may be asking them and given instructions to either cheat, or not follow the rules, or some other type of thing that might trigger my son. I sent you a PM if you want more info, but I thought I'd also share more here incase others are interested. I think the Rothman and Rogers programs are very similar, and I know that there are still several doctors still at Rothman that we liked too.
  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 one of the therapists at Rothman - when a person gets injured, they are given prescription pain meds to deal with the pain. Every time they try not to take the pain meds, they feel bad, so they take them, and then feel good. After a while, as the injury heals, they don't really need the pain meds anymore for pain, but they still take them because they will feel "bad" without them, so they continue even though it's not necessary any more (I know this example is simplistic and ignores the chemical dependence issue - but it's just an analogy). Our kids may have a ritual that they do when they feel anxious. They are feeling anxious because of the inflammation caused by the PANDAS, but the ritual makes them feel better. They know that if they don't do the ritual, they feel bad. After the inflammation is gone, they may not feel that anxiety any more as a result of the inflammation, but since they know they felt bad without the ritual, they continue it out of the fear of feeling bad. It sort of becomes a self perpetuating cycle. I will say this - multiple PANDAS specialists - including Rothman - have said based on my medical history I had PANDAS as a kid, and anyone who saw my history and knew anything about this disease would agree. While I have outgrown the improper immune response - no longer have flares with illness - I do have clinically diagnosed OCD. It is my firm belief (and the therapists we've worked with agree) that my OCD is caused more from growing up with these thought processes being my "normal" way of thinking than any traditional cause for OCD. That's part of the reason we are big proponents of the CBT aspect of treatment. This is when the CBT/ERP can be most effective. But she has to want to work at it as well. We have done weekly therapy on an off for years, and I can tell you it has helped even when we are dealing with a new infection/flare. It has given our whole family tools to deal with the OCD even when it's at its worst during a flare. Dr. Storch, who created the intensive CBT program at Rothman recently left Rothman to start a branch of Rogers Memorial in Tampa, and they are doing the same type of program. My 7 and 9 year olds just finished it last week. It was a LOT of hard work, but it was amazing. My son started in a mild exposure flare just after finishing the program, and started to rage because a shower ritual went wrong - he whipped a towel at me and missed (at which point I told him he had to go to his room - our rule when he gets physically aggressive, he can throw things and rage all he wants, but not where he can hurt others) - this normally would've immediately escalated - but instead, he crumpled to the floor crying and said "Mommy, Harvey is bothering me really bad right now, and I'm really frustrated - I need a minute to calm down". (Harvey is what he calls his OCD). Before the CBT program, that wouldn't have happened. It was a HUGE step forward for us. The program doesn't just deal with your daughter's OCD and behaviors, but also your responses to it and how you can help break the cycles as well. It was a great experience for us. And they know their stuff about PANDAS as well.
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