airial95

For T&A, if you have PANDAS, it's a good idea to be on abx both re and post surgery and have IV abx during the operation. If the tonsils are harboring anything yucky, it can be released directly into the bloodstream causing bad PANDAS reactions. There are some folks that have even reported that it was the T&A that caused the onset of their kids PANDAS.

I think it was a manufacturing defect with the HE washers, the front loaders had most of the problems, but I think there were some toploaders that were included in the recall. I usually keep the lid open for a day or two after doing laundry (I try to do it all on the weekend) to dry out.

philamom, our Samsung is just about the same age, but I recall when we were researching it, there was a recall on many machines because they discovered the were hold mold, even when cleaned to manufacturers instructions. There was also a class action suit because it was determined that the manufacturers knew about the problem, but did nothing, and were still recommending their instructions to folks who would call for help, knowing they didn't work. I would try to look that up and make sure your washer isn't part of that...

Oh, bigmighty mentioned a doctor's note for absences, we actually wrote that flexibility right into both kids 504 plan, and it has worked beautifully. Another insurance note - UHC, BCBS and some other insurance companies have changed their IVIG coverage in May, making it even more difficult even for true ID patients to get it. While we were going through our insurance issues with my daughter, the PA in charge of the office was telling me they have been having problems with UHC since the spring for even their true ID cases. She mentioned one that has been getting IVIG monthly practically SINCE BIRTH, for 12 years now, and on their last yearly re-auth, they were told that they had to stop IVIG for 4 months, re-run the tests to determine if the IVIG is still medically necessary. So it's not as automatic as it used to be. Also, for traditionally ID patients, the proper dosing is a low dose - 0.4-.8 g/kg of weight, where for it to be truly effective for PANDAS it needs to be 1.5-2.0 g/kg of weight, making approval difficult even for the ID kids. Not trying to be Debbie Downer, just trying to share everything I've learned. I know some kids have had no problem getting HD with an immune deficiency diagnosis, and others who have. I am friends with a mom who's child is severely immune compromised, and has been on LD weekly for YEARS, when he had his PANDAS onset, he improved to 100% with his first dose of HD, he had it for a while, and then she had insurance/doctor problems, and has spent the last 9 months looking for an new immuno/neuro to prescribe the HD. Finally found one and her son is getting his HD infusion next week.

My severe PANDAS son has had 3 infusions thus far, my less severe daughter has had it once. My son: He does not have an immunodeficient diagnosis. However, we were able to get it covered by insurance because of his medical history (strep 10+ x per year prior to T&A, 6+ per year after - all while on full strength abx/multiple abx). The infusion was done over 2 days, and is prescribed by weight, so how long you are there will depend on that. Our son is a smally fry, and his were about 5-6 hours each day. The hydration is important, as is dosing with ibuprofen (or Tylenol) and benedryl 1 hour pre infusion and repeated every 6 hours. Some folks use steroids pre- infusion as well, he have not done that on every infusion. Some also use IV fluids prior to infusion, we have not done that. His first two infusions were done at Dr. B's infusion center. The first two were done over the summer, and because they were out of town, we took more time away than we would have if it were done at home. The first time he had some pretty gnarly side effects (bad headaches/vomiting) that came on about 8 hours post infusion on the 2nd day and lasted about 8-10 hours, the second time the side effects were less severe, and came about 10 hours post infusion and were over within 6 hours. He was tired after each infusion. As for results - the results from the first infusion were immediate, and we never went through the ups and downs others have reported. He remained 100% for about 8 weeks post infusion each time. Because of the changes in Dr. B's office, we went to our local immunologist who was finally on board with IVIG. We got it covered because we had documentation of his improvement from the first two infusions (primarily no strep infections!!!) We did it at home (see my daughters explanation below for reasons why), with a nurse coming in. He had ZERO side effects for his third infusion. The results weren't as strong, but his sister had strep at the time of infusion, so we're thinking that has had something to do with it, or we are just seeing the ups and downs for the first time. (the infusion was only 3 weeks ago. The nurse struggled to get the IV started, which was a disaster. He was already nervous about not being in the Dr's office, so after the first miss, he was crazy. But we have a friend who works in the NICU at our local hospital, and she was able to come over and get it started. Cost: The first infusion was about $1300 because we had to reach our deductible, 2nd was about $585 (20% copay until we reach our out of pocket max), the third was a bit more expensive because we switched to home infusion, at about $795. For our daughter: In April she got strep, and for the first time since her onset, she didn't pull out of the flare after a 30 day course of abx, like all the other times. After changing/adding abx multiple times in 2 months, we immediately pursued IVIG, seeing how great it was for our son. The immune also agreed that was the right step and rx'd HD IVIG. Unfortunately, they filed the insurance information improperly from the start. We were able to get the drug and infusion covered without preauth (and had the rx already ordered!) but the hospital where the infusion center was located required it and that's where the glitch lied. When pre-auth was requested, the Dr. requested it for PANDAS, and coded it as "personality disorder" - which is obviously not what IVIG is used for. That's why we ultimately had to go with home infusion (could get the drug covered, but not the infusion, once we had the formal denial.) Overall it cost us about $1100, because we got a discount on the nursing for doing it at the same time. She did great for her first time, successful poke on the first time, and did great. She had side effects on the EXACT SAME schedule as her brother did for his first infusion but far less severe. She threw up a couple times, and she said her head didn't hurt as long as she didn't move around too much. Overall, she missed 3 1/2 days of school - 2 days for the infusion, and then 1 1/2 days the next week when the headaches came back. Her results for her first time weren't as strong as her brothers, but she also tested + for strep exactly 1 week before her infusion (while on 3 - yes 3 full strength abx) so that didn't surprise us, but it did reduce her OCD and anxiety immensely, down from practically round the clock, to may 1-2 small episodes per week. We try to schedule the infusions on a Thursday/Friday schedule so they have 2 full days to rest before they go back to school. They will be tired, so we give them permission to call to come home at anytime for at least 2 weeks post infusion. We pull them from gym and recess during that time because if they overexert themselves, we found the side effects come back (my daughter was doing great until she decided she was going to go outside and play during recess in the hot Florida sun - the headaches came back that night.) The playkit someone else referenced is WONDERFUL. Both of my kids have them and those bears are their best friends. The first two infusions my son didn't want to treat the bear during the infusion, but wanted him with him. This time, we had to hook him all up so he was getting his "super medicine" at the same time. Neither of my kids are immune deficient on paper. Just a ridiculous history of strep. If you want to get it approved by insurance, the wording of the letter of medical necessity and the coding they use is critical. We got help from a special coordinator from one of our approved pharmacies, she was very familiar with PANDAS (3 of her kids have it), so she knew what to do. She said, basically, any mention of PANDAS/PANS/PITAND and you are basically dead in the water (the reason why we didn't try to get the home nurse covered for my daughter for the time being). It has to be coded as autoimmune encephalitis, immune deficiency-NOS (non specific) or specific AB immune deficiency (which is what we used for my son) based on specific antibody tests vs general IG numbers, or history of chronic infection not responsive to other treatments. I know it's a lot of info, but hope it helps!!!

Its a Samsung, I don't really measure, but its not much, maybe a half cup or so? Just enough to boost the super heated cycle.

Is there any reason you are not considering another round of IVIG if this continues? My son is a pretty severe case, but because he was so young (2 yo) and his chronic strep history, we waited about 4 years from onset to finally pursue IVIG - partially trying to determine the cause of his constant strep infections every 6-12 weeks for 3 1/2 years! We finally pulled the trigger. Because of his history and how long we waited for IVIG, Dr. B, Dr. M, our ped and our local immunologist all warned us that it may take more than 1 to get him back. Dr. B suggested starting at every 8 weeks and go from there. He got us 4 HD treatments approved by insurance over 6 months. Within 48 hours of his first infusion he was 100%. His sister tested + for strep 2 weeks post infusion and we didn't even see 1 symptom out of him! It was wonderful. I scheduled his next infusion (accidentally) at 12 weeks instead of 8. Like clockwork, around week 8, he started to deteriorate. It wasn't as severe as he was pre-IVIG, but we saw many of his OCD and ADHD tendencies creep back in. After his 2nd infusion - 100% again. We were careful to schedule his next one right on target. And like clockwork, at week 7 he started to flare (his sister had tested + for strep the SAME DAY he had his first episode of throwing chairs at school.) We think he fell off earlier than the last time because of his sister's strep, but his infusion was scheduled for the next week, and just like the previous 2 - the symptoms revolved fairly quickly after the infusion. (My daughter got her first infusion at that same time, and is not quite 100%, but easily 85-90% better now.) We now have insurance approval for him for another 4 treatments for him over 6 months, and at this point plan to continue that pattern for at least that timeframe, before we decide to back off entirely, or slowly increase the time between infusions.

I have bought new diswahsers and washer and dryers over the last few years (post pandas). Both my dishwasher and washing machine has sanitize settings (which can be used for a cleaning cycle or to wash dishes/clothes. It's basically a superheated cycle. I clean my dishwasher monthly on the superheated cycle with Lemmishine. It's actually a dishwashing detergent, but its excellent for cleaning and sanitizing your dishwasher itself. (we only use it for that purpose.) For the washing machine, I have one that also has a self-cleaning cycle (superheated of course). I use that weekly after doing all of the laundry. Once a month, I run the cleaning cycle 2x, the first using vinegar to break down any buildups, the second time without anything to make sure all of the vinegar has been cleared out. My dryer also has a sanitize setting. Once a month when we run the cleaning cycle, I run a timed sanitize cycle there too - just because I'm paranoid.

Our advocate differentiated the IEP vs 504 difference related to services needed vs. accommodations. For example, if a child for what ever reason needs a paraprofessional to make it through the day, that would be a service, speech therapy, occupational therapy, full time or part time placement in an ESE class, etc...those would all fall under an IEP. Things like extra time for assignments, unlimited restroom visits, fidget toys, special chairs for ADHD kids, etc... those all fall under 504 plans. My son no longer needed the placement in a special ed classroom by the end of pre-k, so they closed out his IEP and we did a 504. Because he already had qualified for an IEP - he didn't need to qualify again for his 504. Because many of the accommodations were already in his IEP as "strategies" to achieve his 504 goals it was almost pre-written for us. IEP's are usually referenced in context with developmentally delayed children or kids with a learning disability which has a far more academic aspect, but is specifically for children who need special services for any developmental or physical medical condition. A good friend of mine has a daughter with SMA (spinal muscular atrophy), she is in the gifted class at her school, but still requires an IEP because she needs special transportation services, and an aide at certain times of the day to assist her with some class transitions, she is accommodated in an ESE setting during PE (working on her gifted work), and her aide also is there to assist her in some personal physical matters (toileting, etc...) After our advocate explained it, it seems I started to see/meet lots of folks whose kids had IEPs for non-academic reasons. Up until a few years ago, our school district didn't do EPs (educational Plans for gifted students) until 3rd grade. If there was an exceptionally gifted child younger than that - they got an IEP because there was no other way for them to get the gifted services. They changed that a few years ago.

nicklemama, be cautious when the school tells you that because he performs at/above grade level an IEP is not needed. The qualifications for an IEP are not strictly tied to performance. It is whether or not special services are needed for them to achieve their potential/goals academically. We were initially given that line from our district when my son first transitioned to the school district when he turned 3. Still slogging through his initial onset (at 19 months, but untreated/diagnosed until 26 months old) his 2 1/2 year old developmental assessment still had him at average/above average. So we were told no IEP was needed, we pressed, and they initially gave him 2 hours /week with an ESE teacher sent to his day care. Within 3 weeks a new meeting was called because the ESE teacher clearly saw that more was needed. For this meeting, we brought an advocate with us - when they tried to push back even against their own ESE teacher who had observed my child using the same line - our advocate very quickly reminded them of the rules. She told me that it is very common for them to try to steer parents away from IEP services because they are preforming adequately academically. Then she gave us this example, a child who has Cerebral Palsy, or Spinal Muscular Atrophy, or is deaf or blind, may be a gifted student and perform exceptionally academically - but they are still entitled (and required) to have an IEP to accommodate their medical conditions. And it is no different than PANDAS. She said all to often parents listen to what their school district is telling them without questioning what the laws really say. My son got his IEP - was in a special ed pre-k for 3 years, which did wonders for him. His last developmental assessment at the end of last year scored him exceptionally gifted (verbal abilities equivalent to a 17 year old). He's now doing well in a regular K. Both of my kids have 504 plans, and we have the same situation as you do with a great school that gets it and is often very proactive (they implemented almost all of the accommodations for my daughter automatically, and came up with a few of their own, at my first sit down with the teacher and principal for my daughter in K, and we didn't even formalize her 504 until last year.) I'm happy your child's needs are being addressed, I just share my story as an FYI and heads up to other parents who may be told the same thing.

Smartyjones makes some excellent points too. The school could care less about the medical process (inflammation, antibodies, blood brain barrier, etc.), the medical treatments (abx, IVIG, PEX, etc...) or for that matter all of the complexities of the triggers. Keep it simple: autoimmune disease, causes neurological symptoms - PERIOD. And then focus on how it affects his abilities in the classroom and education. They really don't care about anything else. The other one is on the "sleeper" status. We too have not told our kids about any of their accommodations other than those they need to know about ("chill spot" for example). My daughter has no idea why a teacher sometimes escorts her into the classroom - but there is someone watching out for her specifically at car line and they jump in if they see her struggling. We have it in our 504 that these accommodations are to be implemented if the parent (or doctor) gives formal notification of a flare (this can be based on discussions with the teacher if she is seeing a rise in symptoms that may not be evident at home), and if times of high strep rates at the school - which is triggered by the school nurse. This has also worked well for us too. But like Smartyjones said - it also depends on how responsive the school is in general.)

We have 504 plans for both children. LLM is spot on - a 504 plan provides accommodations in the classroom that can help the child succeed with their academic goals in the least restrictive classroom setting - however, these children are not getting special services (speech therapy, para professional, occupational therapy, special ed services, etc...) Those children have an IEP - Individualized Education Plan. My son moved from an IEP to a 504 when he started K. His accommodations had already been time tested, and the only service he was getting was placement in a EELP (Early Exceptional Learning Program) Pre-K. (Basically a special ed pre-K). He struggled a lot in day care, and it was determined he needed a special setting to help him learn to adapt to school. By the time he went to K, he no longer needed those special services, but still needed several accommodations to keep him functional in the classroom. We have all of the items that LLM posted, as well as a special "chill out" spot in the classroom that he can got to at anytime (doesn't need permission) to calm and relax. It is simply a small comfy chair with some books. He is already used to it (they used it for 3 years in pre-K for him), and it works. But we also have it written in for him to go either to the vice principal or head of after care if he still needs less stimulation/anxiety too high. These two individuals were chosen because he responds very well to them. We also have a provision that parents in the class be notified about an immune compromised child and to report to the school when their child (or anyone in the family) has strep. (Both of my kids are strep only triggers, but I know others who have modified it to ask that parents report the specific reason for the absence). We also have attendance accommodations (can miss more school than most), the ability to work from home as needed, and also the ability to work from home for a period of time if there is excessive strep in the classroom. They also have written in the 504 more frequent washing of desks, cleaning the classroom than usual, and very limited sharing of community classroom supplies (we provide a second set of EVERYTHING just for our kids) to prevent spreading germs. My daughter, who suffers from severe separation anxiety, is allowed to have an escort (one of her favorite teachers) to the classroom, or if it's bad, can hang out in the clinic until the anxiety passes, and then is escorted to class. She's in 2nd grade and this accommodation has worked fairly well. Just remember, the accommodations have to be related to how they function in the classroom and academic performance. I limit my "education" on PANDAS initially as well. Before the teachers even meet my children, I provide them with a simple 1 page cover letter that briefly (3 sentences) introduces PANDAS, and then I focus immediately on how it impacts each of them in the classroom, and what they may expect to see. I also briefly mention any treatment protocols that are undergoing that may affect attendance like IVIG), and ask them if they see any thing out of the ordinary, to err on the side of caution and notify us so we can make the call to go into the doctor or not. I direct them to the 504 for more specifics. To that, I attach a 1 page "resume" on my child that shares their likes, dislikes, strengths, weaknesses and tips specific to them to help them cope in school. (My daughter's first grade teacher last year liked it so much, she has adapted it to use in her classroom as the 1st week of school "homework" for parents.) Then, I only include 2 other attachments, the School Nurse Journal "PANDAS in the school setting" article (a bit old, but still a good resource specific to the classroom - can be found on Pandasnetwork.com) and the OCD in school article from the IOCDF. I offer them more info if needed, and usually after they see my kid's first flare, they ask for more info. We are lucky, our school is great, our school nurse has seen other cases of PANDAS in her previous schools, and the principal is very interested and engaged - always pulling me aside at random events to explain to other teachers/staff what PANDAS is. My son's teacher got it immediately after seeing his first "episode" (it was the week before his 3rd IVIG, and the same day his sister was at the doctor with +strep test). When I met with her about it a few days later (thinking I was going to need to explain more), before I could say anything she said that "it was almost like a different kid, like he wasn't even in there, his eyes changed, face changed and the "real" Broderick had just checked out." I was so happy she could see it so clearly.

We have been talking to them about coming to Florida. I'll keep you posted.

I haven't heard of that one. There is one called "a real life jeckyll and hyde" being done. They have travelled the country for interviews. But I think they are based out of new england. Can you share the details your friend found?

In addition to cities - Counties also issue proclamations! I'm working with one of my County Commissioners now to get it declared in Hillsborough County FL

MomwithOCDson, I agree that discussiosns about docs can are unbalanced, but in the opposite direction. Every time someone posts anything remotely negative (and I agree, this thread is far from the negative we have all seen before) this discussion about protecting docs happens, and the thread gets drleted. But there are countless pages of recommendations and raves about certain docs - all sugar coated with the negative experiences deleted. It creates unrealistic expectations of these docs for new patients. I'm just not a fan of censorship of any form, although I do understand the need at times. I just think that the rules should apply uniformly. On a side note, when we were choosing our 2nd specialist (the first was local of us so it was a no brainer), I read various posts from others (good and bad) to form opinions before i asked for input and gained insight I wouldn't have gathered from PM's. I don't think we should stand by or condone doctor bashing in anyway. But the rules dictate negative experiences should be done via PM (whoch i dont disagree with), then the same should go for positive PM's and doc recommendations - to balance the opinions.

Sorry for all the typos...typing from my damn smartphone. Considering it auto corrects everything incorrectly, why is it called a "smart"phone?

I didn't mean to imply I have a problem with DR's charging for phone calls, quite the contrary, T.Anna I quite agree with you (and as a consulting engineer who bills out $150/hr I too must charge for phone calls). My point was that many folks don't have unlimited resources to pay out of pocket for multiple docs to find the right fit and just to find out if red flags are present so sharing administrative issues and overall generally impressions/opinions is s good resource for folks. And I couldn't agree with nicklemamma more - keep looking for local help. Too often I see here and in other forums where new films say their ped dx'd and are willing to treat and they are overwhelmingly encouraged to not waste their time with the local doc and run to the experts - which leads to the overload of the current docs and continuning lack of local knowledge. Our ped dx'd our son, after 6 months we called in an expert to consult, after 2 years we called in a second expert. Our ped remained our goto guy the whole time. He wqs always available and while he would call our experts, he would never hold off treatment waiting for a response. Now my ped is just as knowledgeable as the experts, and every other specialist we work with are amazed at how well he handled our case. 4 years ago here, folks were encouraged to work with their local docs first if they were open and willing to learn. Now the immediate response is to cut and run to the precious few experts. We're creating an unsustainable pattern where we overwhelm the docs above without bringing new docs into the fold to learn and treat. And because I knew I had a responsive ped, learning the limitations of the various experts here (too conservative and difficult to get a hold of when needed, respectively) I chose our experts based on our needs and what we could tolerate. If we didn't have our local support, a doc out of state that is difficult to contact would not have been an option for us. Full disclosure - we have never been a Dr. T patient so none of this is a direct reflection, just my opinions and personal experiences. And now I will try not to fall of my soapbox.

I both agree and disagree with MomwithOCDson. I do think it is important to protect the few docs we have, but I think there are a few caveats to that. First being - it should apply equally across the board (and I know you agree with me there). All to often some docs are protected where others who are also well respected pans experts are openly bashed because they were too cautious, too aggressive, don't test deep enough for Lyme, etc... with no one speaking up. It should be uniform across the board. Second: I feel like we should be far more private about treatment protocols and insurance coding than anything. That's the type of thing that is going to get noticed and get them into trouble - not administrative hiccups. Not only does this cause problems potentially with insurance companies and state boards, it can cause problems for new parents. Each doc does treat differently, and has different "protocols" - but one thing that is not reflected often enough is that most (if not all) of the good pans docs treat the individual child and individual symptoms case by case - so what they did for my child may be totally different than what they do for others based on individual circumstances. We often see people gripe because "they heard Dr so and so does IVIG but he won't order it for my kid" - no two patients are alike and none of these experts take a cookie cutter approach. On the other hand, its precisely the type of administrative problems and overall impressions I feel should be shared, it protects the docs from scrutiny for treating outside the "box" (long term abx, etc) but gives people an insight into some of those red flags prior to choosing an expert. Many of these docs don't take insurance, and many people cannot afford costly payments for initial appointments just to find out the doctor is not responsive, or difficult to get labs and refills from, etc... Ive been around here long enough to see this pattern repeated over and over - one doctor becomes the "doc du jour" that is overwhelmingly recommended, and gets flooded with new patients. They all genuinely care about helping our children and become overloaded, which leads to scheduling patients months out, difficulty in getting a hold of them, unresonpisveness in general. Some have even had to go so far as to stop taking new patients. And then collectively a new "doc du jour" is chosen, the pattern repeats, and the last popular doc can catch up. When we constantly only post good positive experiences with doctors, instead of balanced reality based info - it props them up to unrealistic proportions, and sets up new parents foe disappointment when dealing with them. That's just my option in, and you all know what they say - opinions are like @$$ holes - everybody's got one!!

Fall 2009. We went to mexico that November so the doctor recommended it. This was post-onset for my son, but pre-dx (people were still trying to convince us it was the "terrible 2's"). It pushed my son so far off the cliff, even my husband noticed the change and insisted it had to be the shot. After dx, our ped agreed and pulled all flu-shots even from consideration. The rest of the vaccines we decided to discuss/decide on a case by case basis. A plan that has worked very well for us. Side note - I learned a very valuable lesson on that Mexico trip - if you ever want to smuggle anything illegal in through customs - bring a maniacally raging PANDAS two year old with you through customs - after waiting over an hour there for our luggage - they waved us right though with very little fuss just to get my screaming tantrum-ing child the ###### out of there!! There was spontaneous applause as we left the area! (not that we were smuggling anything in - we just laughed at how badly they wanted us out of there that they didn't even care, one way or another!)

I have an excel spreadsheet that we used, if you PM me your email address, I'm more than willing to share it with you.

How do you track his progress? Do you use a log or journal? We found that using a numerical logging system every day helped us not only stay objective, but effectively measure progress. Grading each symptom 0-9 every day, we were able to track progress clearly. We found that often times on days when we were particularly stressed, exhausted, over it all, it would feel like we haven't gotten anywhere and everything we were doing was a complete failure. But then we would go and look at his scores for the day and realize that wasn't really the case. While he may have had a meltdown, it only lasted 20 minutes and he was able to resume his normal activities afterwards - and it was only rated a 6 on his scale. Where previously, the meltdowns would've lasted hours, and even after they ended, he couldn't resume the activity that started it all without triggering another meltdown (that would've been a 9). Because of our (completely understandable) emotional exhaustion, that shorter tantrum may have felt like a 9 in the moment, but when scored objectively and compared to the past - we could see that we were actually making slow but steady improvement. On days when I would particularly feel like we were failing him - I would go back and look at the log entries from the previous months - it helped me maintain perspective of how far we have come, instead of focusing on how far we had yet to go.

With my son, we always had lingering OCD between flares. It was always the one symptom that wouldn't completely subside. It would get better, but there were just some rituals that were stubborn. Instead of using medication, we decided to try CBT/ERP therapy. The way our pediatrician described it in our case was this: our son was forming new neural pathways every day, and while he was in a flare, some of these pathways were being formed with the idea that some of these things were just "normal" (like washing your hands after using the restroom - just something you always do without thinking about it.) Like a bad habit. Then he used the drug addict analogy - people addicted to prescription pain meds did have a legitimate reason to be on them in the first place, some sort of injury or severe pain, as time goes on, the injury heals, and the pain meds are no longer needed, but the psychological response becomes "if I don't take them, I know I will feel bad, so I have to keep taking them." Now replace the pain meds with an OCD ritual, even after the PANDAS/biological reason is gone, the child only remembers that doing whatever ritual it was made him feel better - the actually compulsion is gone, but it's replaced by the knowledge that not doing it made him feel bad, so he should just do it not to feel bad - like a drug addict. It's sort of a convoluted analogy, but it seemed to make sense to me. The therapy has really helped for both kids. Mine are younger (5 and 7), and my youngest started therapy about a 9-10 months in to his PANDAS journey (dx at 26 months old), so a lot of his therapy really revolved on how WE should react to his compulsions, how to address them without encouraging them (which we often did). A word of caution - therapy won't be very effective if you're not managing the health aspect of PANDAS. Then it's just like throwing deck chairs off the titanic. But if you're handling the medical side and seeing just a few lingering OCD symptoms - it can be very effective. I know lots of folks have raved about the USF/Rothman Center intensive program. We use them for our regular therapy appointments because they are local for us. We don't do the therapy continually. It's usually 1x per week for about 2 months, and then over the next 2-4 months it spreads to every other week, and eventually to once a month. The best thing we got out of it is that it has given both of our kids a vocabulary to safely discuss/describe their feelings. Which has helped mitigate many an OCD related meltdown/panic attack. I felt more comfortable taking this approach than medicating partially because my son was so young at the time, but also it has given them tools and techniques to use even when in a flare. Ooops!!! Just saw that at the end of your post you said you have gone to USF before. We have found that anytime we get the lingering OCD, we go back for a refresher, yes they have the tools, but sometimes they just need to be reminded. Maybe a local therapist that can give you those touch ups?

Be cautious of some Omega supplements however, because some also have Omega 6 and 9 which can actually CAUSE inflammation in some folks (According to Dr. M). We have talked to our doctors repeatedly about long term dosing with ibuprofen. We do quarterly CBC labs to check organ functions, but basically have been advised that as long as we don't exceed the recommended daily dosage for their weight, long term use can be managed safely. We use it daily, but only 1x a day (in the morning), and may give a dose later in the day if needed during a flare.

Strep doesn't cause inflammation - my very simple explanation (that I give to teachers and strangers) is that its the immune system's attack on the brain that is causing it. I relate it to someone repeatedly punching you in the arm non-stop for days and weeks on end...eventually that constant attack is going to cause inflammation/swelling at the site of the attack. Same thing with PANS. Is it really more complicated than that - absolutely. But folks seem to understand that analogy. And if your doctor is saying the PANDAS/PANS is not related to inflammation, then they don't have a very good grasp of the basics. Our "wonder drug" is actually ibuprofen. It can pull my kids back from the brink during a flare and keep them functional. We also try to boost their diets with Omega 3 and foods that are natural inflammation reducers (fish, blueberries, etc...)