airial95

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.

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.

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.

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.

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.

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.

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.

Rifampin has been a game changer for us. We have chronic strep - it was the first antibiotic to keep the strep at bay (prevent re-infection), and it reduced symptoms almost entirely. When we stopped a course of rifampin, my asked if we could go see the doctor - when we got there, he told him "when I was on the red medicine, Harvey was gone (what he calls his OCD), now that we're all out of the red medicine, Harvey is back. Could you give me more red medicine?" He was 4 years old at the time.

Year 4 – a look back
 
Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
 
I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
Second: http://latitudes.org/forums/index.php?showtopic=16245&hl=
Third: http://latitudes.org/forums/index.php?showtopic=19517&hl=
 
And here are my reflections for the 4th year of our journey:
 
I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.  

We used an excel spreadsheet and visually graphed progress. It helped immensely to see how quickly patterns emerged based on different treatments, etc...
 
We went even more specific to our chile than the Yale OCD Scale, mainly because when we started our log our son was still a toddler (2 years old - he's almost 7 now) and the typical OCD scales were difficult to apply at that age. We listed every symptom/behavior we wanted to keep track of, and rated them daily on a scale of 0-9. 0-3: Normal age appropriate behavior (because many symptoms can be seen in a normal child as well, just not quite to the scale PANDAS parents see them) 4-6: A step up from normal age appropriate behavior, but no SO disruptive that they didn't recover; 7-9: Completely dysfunctional.
 
We used an numerical scale because it helped us keep the emotion/stress out of the log. For example, after a long day where everything goes wrong at work, a 15 minute tantrum at the end of the day over teeth brushing rituals seems terrible and worse than it actually may be. But when I had to actually grade it on a scale of 0-9, I realized that what totally felt like a 9 to me at the time, was probably more like a 6 or 7 because tantrums for the same thing earlier in the week lasted well over 90 minutes - so objectively speaking, 30 minutes was actually an improvement.
 
Then we would total the scores for the day and graph them. We had a "goal" score range that we were looking to hit with each treatment/therapy, etc...
 
Using this method, we were able to identify several patterns that were huge for us, for example:
- when my son is exposed to strep (but doesn't test + himself) we would see about a 20-30 point spike in behaviors for 3-5 days and then steady improvement for another week or so back to what it was prior to the exposure. (This helped us time when to see the doctor for strep checks - if things were still getting worse by day 3-4, we knew it was likely more than just an exposure).
- when my son wets the bed, he is + for strep. 100% of the time. Regardless of what/how much antibiotics he is on at the time. This has been HUGE for us in managing subsequent flares. If he wets the bed/has a potty accident - we are in the Dr. THAT DAY. No waiting to see if things get worse. This early intervention has helped us keep flares from spiraling out of control.
- napping can help improve his "daily scores" during flares by 10-15%. Continuing naps outside of flares has helped keep exposures to a 1-2 day spike with typically only 1 "major" meltdown.
 
If you're interested in our spreadsheet - PM me your email address and I'll be happy to share.
 
I'll also point out that our spreadsheets (or "crazy mom binder" as my husband called it), helped us convince more than one doctor who was on the fence about it being PANDAS that it couldn't be anything else. The data didn't lie!!

I'm one that you could call "on the fence" Neither of my kids had any negative reactions to the standard vaccines - and my sons sudden onset was directly related to a well documented strep infection (impetigo) so while he was young at onset (19 months) there was no temporal relationship to vaccines at all. (We plotted a very detailed timeline of his onset that included vax info).
 
Now that we know they have PANDAS, we take each shot one by one, evaluating each of them on a case by case basis related to risk vs. benefit for OUR child. And THAT is the key thing that folks on both sides of the debate tend to lose sight of. What is right for one family is not necessarily right for another - there is no right or wrong in this debate, only what is right for your family.
 
As to the research, I'll be honest, we did a lot of homework before we had our first child looking at all of the studies available at the time, and I learned a very valuable lesson - truly unbiased research is a rarity. In addition to reading the studies and assessing their validity - it's just as important to look at the researchers - what other research are they doing? Who is funding their research? Where have they given lectures, etc...? What is their area of "expertise"?
 
We found a lot of disturbing information on both sides of the debate when we looked at that information. For example, our children were born before The Lancet retracted Wakefield's study and it was discredited, but when we read the study (media summaries of any research often adds bias and implies information that is not actually representative of the study itself) and researched who Wakefield was, we saw that among his other research activities in the past he was researching/patenting an alternative vaccine to the MMR. That didn't sit well with us - because it appeared that he had a financial interest in discrediting the MMR vaccine that was currently in use. So we didn't feel comfortable taking giving his study undue weight in our decisions (and at the time, it was still considered the best evidence out there.)
 
Another example is the CANS paper put out by Singer et al, they failed to disclose that their research is funded by the pharm companies that manufacture Tourette's drugs, so they had a vested interest in stating that those medications are appropriate for treatment of PANDAS like disorders. Again, a retraction had to be printed.
 
Both my husband and I are engineers, so scientific research isn't something that's too foreign to us. But one thing I have found, whether it's medical research, or something related to my field, there is always more to the specifics than what a head line implies. And while not ALL researchers have an agenda or financial incentive behind their results, but it's just as important to know who they are and what point of view they are coming from as it does impact how the data they publish is represented.

OCD is often the last lingering symptom for many kids because their OCD rituals, compulsions, etc...have become engrained. Like MomwithOCDson suggested, it might be time for therapy. We found that with our son especially, because he was so young at onset, all other symptoms would significantly improve/resolve within a few weeks of changing up abx with a new strep infection - but the OCD seemed to linger.
 
We started therapy and our first therapist (who was awesome, so sad she got married and moved away) pointed out that not only were we accommodating his OCD (which is often the case to maintain sanity) but in young children especially it can become their "normal". For example, you don't think about washing your hands after using the restroom, it's just something you do because you ALWAYS do it. Same thing for the OCD. Having to line up your trains before leaving the room isn't any big deal because it's just what you ALWAYS do when you leave a room.
 
She gave me an analogy that really resonated with me on the whole "residual OCD" concept. When someone gets a severe injury, they use pain killers to help with the pain. As time goes on, they grow dependent on the pain killers because they remember how awful they felt when they don't take them, and taking them makes them feel good. Eventually it becomes a never ending cycle and you have an addict. Same thing with PANDAS and OCD in young kids. I may have to touch the light switch 3 times before leaving a room when I'm in the midst of a flare because if I don't I have terrible anxiety and worry about whatever crazy thing my OCD is telling me. Once I'm past the flare, I still will continue to touch the light switch 3 times because I remember how awful it was not to, I no longer have the same fears and worries about whatever crazy thing my OCD was telling me before, but now I just don't want to feel "bad" so I'll just continue to touch the light switch.
 
It made a lot of sense to me. And CBT/ERP therapy has really helped both of my kids in the long run. It helps with the residual OCD like I mentioned, it helps my husband and I react/respond better when OCD is in control, and it gave my kids a vocabulary and tools to use even in the midst of bad flares that have helped them maintain functionality. It's hard work, and torture for us parents because part of it is letting your child feel the anxiety and have the meltdown so they can learn that they can come out of it, but it has been worth it for us.

I don't have any personal experience with Rogers, but I have heard others report success stories there. As to their approach to PANDAS - Dr. Reimann is there, and he is a well known name associated with therapy specifically for PANDAS. Him and Dr. Storch (currently at Rothman at USF) have collaborated specifically on therapy with PANDAS.
 
On that note - we have extensive experience with Dr. Storch from USF/Rothman, and he is leaving there at the end of this month to open a Rogers in Tampa, FL to expand their program down here. Storch DOES support abx and other immune treatments for the treatment of PANDAS in conjunction with therapy (and psych meds in extreme cases where self harm/harm to others may be an issue). Many have reported good things about the USF intensive program that he runs - but that is outpatient. We have had good experiences with his group and regular therapy for both of my PANDAS for years now.
 
That all being said - what starbucksmom has said is unfortunately a broader issue - how the graduate assistants and fellows who do a lot of the day to day work are supervised/trained/etc... Even at Rothman - which is a PANDAS research facility - folks have encountered the occasional grad assistant/fellow that either dismisses PANDAS, pushes for psych meds prematurely, etc... I'm beginning to think that it's an unfortunate problem in many places.

I'll also add that having done CBT when new flares come up, while it doesn't eliminate the OCD, it makes it much more manageable. My kids both tested positive for strep about 2 weeks ago, and while we have had some bumps in the road, they have remained functional and the resulting flare no longer controls our entire household like it used to. They were still able to participate in VBS, play with friends, and my daughter even went to a sleep over last night (she has bad separation anxiety). And it's a good part a result of them knowing and using some of their CBT tricks and us knowing how to respond properly.
 
For example, my son's separation anxiety spiked with this infection and for the first time in years, he started being afraid to leave the room alone even to go to the bathroom. After a couple of days we realized how severe it was, and started implementing some of our tricks and language. He would ask me to go to the bathroom with him, I would ask "why", his answer "I'm afraid to be alone". My response "Are you afraid to be alone, or is Harvey afraid to be alone". No answer (which means it's Harvey and my son knows what comes next...hoping if he doesn't answer I won't say it). My response "I thought so, and you know that Mommy doesn't have to listen to Harvey. So I'm not going to go with you into the bathroom. What do you think will happen if you go in there alone? - and here I would ask him a series of rhetorical, increasingly silly hypothetical situations that might happen alone in the bathroom - the sillier the better". Ultimately we find a solution to him being able to go on his own. It might be leaving the door open, or my talking to him from the kitchen while he's in there, or even taking one of the dogs in with him! But we hold firm and don't just give in - even though it's much easier.
 
This wouldn't be possible in the midst of a flare if we hadn't already laid down the foundation through CBT.

There are some doctors leaving with Storch. They are leaving Rothman at the end of July, but the new facility won't be taking new patients until October from what I understand. My daughter's therapist Dr. Nadeau is making the move - that's how I found out about it. The new facility is in Tampa, just over the bridge from St. Pete, not too far from the airport. Closer for us, as we are in the Tampa area. (hoping we don't have a major set back before they start taking patients because my daughter doesn't want anything to do with anyone other than Dr. Josh!!)
 
We have been very lucky with most of the therapists assigned to us, there was only one that we didn't really connect with and we requested a new one and didn't stick with her.
 
We started CBT with my son before he even turned 3, and have done it off and on with both kids since. Most recently, my daughter was experiencing a mild flare from allergies (intrusive thoughts) and ASKED to go see Dr. Josh at the worst of it - so it has been very helpful for us.
 
But even when we started, which was when my son was at his worst and we were still trying to get a handle on the medical side, we found it very helpful for other reasons - mostly because it helped us as parents learn what we should and shouldn't be doing along the way. Typical parenting techniques don't always work with our kids, and the therapists were able to help us navigate some of the issues like discipline, enabling the OCD (with a toddler, most of his rituals were things WE had to do in a specific way...but we didn't know what that way was...talk about a nightmare!) And even more so - it gave my kids a vocabulary to use to help them communicate when things were bothering them.
 
Our son's first therapist encouraged us to give the OCD a name, partly so my son could have a way to communicate about the OCD, but also so we could separate his actions from "Harvey's" actions - he's not a bad kid, but Harvey makes him do things that are bad sometimes (like trying to kill someone because his food isn't lined up properly). 4+ years later and both kids use the Harvey moniker now. (Funny story, we had to explain to his K teacher this year who "Harvey" was so if he told her Harvey was bothering him she would understand and not think he's certifiable. He had a huge meltdown in class one day - turns out the kid next to him had strep - and after I picked him up, some of the kids were asking if he was okay. With my previous permission, she explained a bit about PANDAS and how it makes some things hard for him and all about Harvey - I got multiple calls from my sons friends moms freaking out because they thought I would be livid that the teacher was telling kids my son had a "little friend in his head" and was crazy - until I explained to them that that was how our son came to understand about his OCD at such a young age...we still get a good laugh about that. And the teacher did an EXCELLENT job explaining it.)

LLM's response was pretty comprehensive, the only thing I will add is to keep a detailed log/journal daily of your child's symptoms, any treatments, even what they ate that day if you start to suspect food issues. It seems like you're already trying to go back and connect the dots, but if you keep detailed records going forward, it will probably help you A LOT for your upcoming appointments.
 
We used an excel spreadsheet and scoring system that another parent here suggested (0-3 = typical age appropriate, 4-6 = difficult/challenging, 7-9 = WTF just happened to my kid???) We listed on the spreadsheet each of the symptoms (specific to each child - we have 2 with PANDAS) and scored them each day. We found using a numerical scale kept us objective vs. just taking notes (we found depending on how emotionally drained, tired, stressed we were impacted how we verbally described the days events - but quantifying it helped keep the emotion out of it - but we also did keep general notes like "didn't nap today, missed morning vitamin, 2 kids out from class sick" so we could also see if other things were affecting symptoms.
 
We were then able to use the log to come up with daily "scores" and chart trends in symptoms, etc..
 
An example of things we learned specific to our son using the logs:
 
- At 6 yo he still needs to nap every day because we found naps had a HUGE impact on symptom severity when we cut them out.
- Wetting the bed = + throat culture EVERY TIME for our son and often precedes other symptoms by a day or two (both of my kids also are asymptomatic to strep, no sore throats, fever, etc...) Now when he wets the bed or has a potty accident, we don't wait for other symptoms to turn up before heading for a strep check.
- He will flare from just being exposed to someone with strep, but the symptoms will spike for about 3-5 days, and then subside quickly with no lingering issues after about 2 weeks.
 
 
I think that our logs were probably our most valuable weapon in fighting this craziness, and keeping our family functional.

I don't have any personal experience with Rogers, but I have heard others report success stories there. As to their approach to PANDAS - Dr. Reimann is there, and he is a well known name associated with therapy specifically for PANDAS. Him and Dr. Storch (currently at Rothman at USF) have collaborated specifically on therapy with PANDAS.
 
On that note - we have extensive experience with Dr. Storch from USF/Rothman, and he is leaving there at the end of this month to open a Rogers in Tampa, FL to expand their program down here. Storch DOES support abx and other immune treatments for the treatment of PANDAS in conjunction with therapy (and psych meds in extreme cases where self harm/harm to others may be an issue). Many have reported good things about the USF intensive program that he runs - but that is outpatient. We have had good experiences with his group and regular therapy for both of my PANDAS for years now.
 
That all being said - what starbucksmom has said is unfortunately a broader issue - how the graduate assistants and fellows who do a lot of the day to day work are supervised/trained/etc... Even at Rothman - which is a PANDAS research facility - folks have encountered the occasional grad assistant/fellow that either dismisses PANDAS, pushes for psych meds prematurely, etc... I'm beginning to think that it's an unfortunate problem in many places.

What does your son have to say about it? Sounds silly, but considering his age, going off to college, etc... his input should be taken into consideration. If you haven't already, it would be a great way to open a discussion of what he needs to be aware of on the PANDAS front now that he is going to be taking care of himself.

What does your son have to say about it? Sounds silly, but considering his age, going off to college, etc... his input should be taken into consideration. If you haven't already, it would be a great way to open a discussion of what he needs to be aware of on the PANDAS front now that he is going to be taking care of himself.

It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!
 
We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.
 
We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.
 
I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.
 
We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.

My son was very young at onset, only 19 months old, so differentiating between ODD/OCD and typical "terrible 2's" behavior was always a challenge.
 
But one of the things we noticed particularly about the ODD was almost a compulsion to disagree or do the opposite of what he was asked. A good example of this would be simply choosing what cup he wanted to use with for his drink - if you would ask him if he wanted the red or blue cup, he simply couldn't make a choice, not because the choice was difficult, because we were asking him to make a choice. If you asked him directly if he wanted the red - no, okay then the blue - no. The over-riding answer was always no.
 
My son is 6 now, and has a better understanding of how his PANDAS affects him than I could imagine for his age, he has since described to me how hard it is to do things he's asked to do, even when it's something he WANTS to do. To go back to my cup example, he would tell me that he would really want the red cup all along, but because I was asking him if he wanted it - he "had to" answer "no."
 
Not sure if that helps, but it helped us to understand it better.

It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!
 
We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.
 
We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.
 
I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.
 
We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.

My husband and I always tested negative for strep when we would get tested (ad nauseum) over the years. When we saw Dr. B for the first time, he ordered full labs on all family members and lo and behold, my husbands titers were through the roof. He was treated, and sure enough, my son saw his chronic re-curring strep infections start to resolve.
 
Another place to look in the family is the pets - they too can carry things that trigger our children.

Year 4 – a look back
 
Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
 
I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
Second: http://latitudes.org/forums/index.php?showtopic=16245&hl=
Third: http://latitudes.org/forums/index.php?showtopic=19517&hl=
 
And here are my reflections for the 4th year of our journey:
 
I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.  

I wholeheartedly believe they will outgrow it, like Swedo said. But the question is - what are the lasting effects? I had strep triggered PANDAS as a child growing up in the 70's 80's, complete with the well documented chronic strep history and all. Dr. Murphy and Bouboulis both confirmed that I had it as a child. (No Lyme - negative Igenix, like my son). While I outgrew the improper immune response (I no longer have any sort of neurological/psych issues related to any illness), I do have clinical OCD as an adult. I firmly believe that the OCD is a direct result of the untreated PANDAS growing up. I had chronic strep, and my sister turned out to be a carrier, but my infections were always treated (in hospital with IV abx on more than one occasion) - but other that the typical course of abx to treat the current/ongoing infection - there were no other supports in place for me. I truly feel that had I had other supports/treatments I may not have OCD today. It's one of the reasons I do CBT for my kids - if I can give them the coping skills as children, maybe they won't have the lasting effects I have seen.
 
On a side note - while knowing what I know now, both my mother and I can clearly see all of the PANDAS related challenges I faced, however, I would not describe my childhood as anything other than happy. I don't feel like I had any more/less drama that the typical pre-teen/teen girl growing up, even though looking back I see where I should have had it more difficult. I'm now a happy, successful, productive woman, wife and mother of 2 - so there is hope for all of our children.