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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 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.
  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 PANDAS do fine with it, however, I know that if you have the MTHFR mutation (neither of mine do) there may be reactions to that. Others may be able to guide you better on that one.
  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 grading each behavior we suspected to be a symptom on a scale of 0-9. 0-3 being normal, age appropriate behavior, 4-6 being worse than typical, but not unmanageable, and 7-9 being WTF happened to my kid. It really helped us with our first PANDA in identifying patterns, and when we suspected our daughter had it 2 years later, it was our most helpful tool in figuring it out.
  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 infusion. The results lasted, and we would start to see some minor symptoms "creep" at about the 7 week post infusion mark, but he was on an 8 week schedule, we were actually okay seeing minor creep because it assured us we still needed the IVIG. We had a bad nurse with our last infusion and decided to take a break. Even though its been a year since his last infusion - the results are still tremendous. He went from getting strep 6 - 8 times per year post T&A (all while on long term, multiple, full strength abx), to having just 3 positive strep tests since Spring 2013. His flares with each new infection have been much milder and manageable. He does still react to exposure to strep, but only about 3-4 days of symptoms and back to normal. We waited 3 years to pull the trigger on IVIG because of his age, we were afraid of such an intensive treatment and really wanted to start low and slow with anything we tried. I'm sorry that we waited that long! He had strep again in July, and his vocal tics returned, they are the only long term symptom we are still seeing and our new immunologist is working to help us get another infusion covered to eliminate that symptom. Hope this info helps.
  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 more conservative/maintenance kind of treatment? Are you looking for someone who can support your local pediatrician? Are you looking to find underlying triggers/infections? There are lots more questions, but each doctor has a different approach/different focus. Having an idea of your goals (at the moment - they can change) will help you choose a doctor that is a good fit. If you are dealing with more minor behavioral symptoms but the worst of it has passed, I would seriously consider CBT (Cognitive Behavioral Therapy). It has been the biggest factor for us maintaining functionality - even with recurring flares. Many folks will tell you that if your child is in the peak of their flare - at their worst- starting CBT isn't a good idea until they are a bit more stable and you've addressed the medical side of it. And I agree with that. But it sounds like you are not in the worst of it right now, and while you still need to address the medical side, your child may be open to CBT. We started CBT with my son when he was just 3 years old. At that point, a lot of the techniques focused on OUR reaction to his issues, vs. his actually behavior. We were taught how to respond "properly" that wouldn't make things worse. We found, especially with the young ones we had, that many of their worst "behaviors" became bad habits once the worst part of the flare was past. They would continue to do rituals, seek reassurance, etc.. because it was "normal" to them, and they knew if they didn't it would make them feel bad (one therapist equated it to drug use - the abuser may no longer need the pain pills for real pain, but they know if they don't take them, it makes them feel bad, so they continue to use). It was the same for us as parents, we knew the wrath that follow if we didn't give in to these rituals and habits, so we did just to keep the peace - further reinforcing the behavior after the flare had passed. The hardest question for us was always when was the worst of the flare really over? (Answer - we kept detailed logs and journals and were able to see clear patterns). Is CBT hard. Yep. One of the hardest things we ever did. I felt like we were torturing our child at times, forcing him to have meltdowns so he could experience his fears and learn to deal with them. I felt like it went against every parenting instinct I had. But it worked. For both of my kids. My daughter just tested + for strep 2 weeks ago. And she has only missed school 2x in this flare - which is huge since separation anxiety is huge for her. How have we managed to stay this functional even though she is flaring (and yes - she is flaring) - using the skills she learned through CBT. We know use our CBT skills even in the peak of the flares (but we still wouldn't start a new round of therapy until the worst of it passed) We are getting ready to go for a 6 week intensive outpatient program with Dr. Storch at Rogers in Tampa (formerly of the Rothman Center) this summer to help reinforce both of their skills (and hopefully tackle some stubborn skin picking she has).
  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 new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.” Turns out, he wasn’t out of his mind. Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different. After 5 years, I find I’m no longer even thinking about “Life without PANDAS”. After 5 years, I’m finally just enjoying living LIFE. Are we fully recovered? Nope. Not even close. There are still flares. There are still way more meds than any kid should have to deal with. There are still fights with the school. There are still lots of doctors’ appointments, blood draws, and hassles with insurance. There are still bad days. But there’s also LIFE. There are sleepovers with friends. There are football games. There are family trips to the beach. There are lazy snuggly mornings curled up binge watching Netflix. There are even some times when they’d rather be with friends than with Mommy. There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!) There’s logging onto Facebook JUST to catch up with old friends! (Who knew??) This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have - now. Have we given up the fight? Nope. Not even close. The fight will continue, just as it always has. But we are not putting our lives on hold anymore for PANDAS. Life is too short. We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have. Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close. Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close. Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement! But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears. God has given us so many blessings, and we decided it was time to start appreciating them! And yes, it took me 5 years to figure that out. It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have. Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace. I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now. Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones. Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.
  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 direction as well. Last thing about Rothman, they do use psych meds as part of their treatment options, they don't recommend them for all PANDAS patients, but they see them as a tool in the arsenal while trying to get the infection/immune system under control. Some parents are very anti-psych meds for any reason and are put off when they go to Rothman and hear that they are suggesting pscyh meds in addition to other PANDAS treatments. So be aware that it may be something they suggest.
  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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