airial95

I have heard from our immunologist that BCBS isn't the only insurance company pushing for this, others have too across the board. They are trying to fight it as best they can, but it's an uphill battle. And absolutely ridiculous.

My daughter takes Cefdinir (generic omnicef) because she has a penicillin allergy - she does okay on it.

The surgery can release bacteria directly into the bloodstream, especially if the tonsils are harboring infection. Many PANDAS docs insist on strong abx prior to, IV abx during, and continuing a strong course of abx for sometime after to combat any bacteria released. If you have access to stronger abx, I would definitely get back on them.

My daughter for the first 2 years was very mild, didn't need long term prophylactic abx, and whenever she got strep we always did a 30 day course of abx minimum. We always did 20 days minimum when she would get strep prior to her PANDAS onset b/c her brother had PANDAS, and our ped didn't want to take any chances (it's the reason I think she stayed mild for so long...until a particularly nasty strain last year.)

My daughter always gets the red, flushed cheeks when she has strep. Sometimes it's her only physical symptom but typcially means a + throat culture.

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.

Thanks, I wrote the first one just for me and shared it with a few close friends. They were the ones that encouraged me to share it, and I've been doing it ever since. Every year presents a different set of challenges, and I think we forget sometimes that everyone is at a different stage in this journey, but ultimately, we are all experiencing similar struggles and emotions. I have always found that it helps me to look back and see how far we have come!

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.

On the Omega 3 - be careful what supplements you give, check to see if they also have Omega 6 (many do). Omega 6 can actually CAUSE inflammation, which can be a problem in our kids which could be the reason for increased tics.

That comment was from a post on one of the many Facbook groups. It spurred a lot of discussion. Had my pediatrician not correlated my son's massive regression and personality change to an impetigo infection, or had we been at a large practice where you see who ever is in that day - he would've absolutely been dx autistic. He wasn't, however, because our ped suspected PANDAS first and foremost (although he prepared us for potential aspberger's dx down the road if PANDAS didn't fit). With PANDAS treatments, you would never think that my son was anything other than perfectly normal. That being said, I remember that original post, and there were many comments made about comments being taken out of context. From my recollection, Swedo's remarks were off-the-cuff and repeated to the parent 2nd hand by the doctor she was meeting with. It was never heard from Swedo directly - so that tends to lend itself to something being lost in translation. Also, Swedo, like Murphy and others, have to protect the integrity of their research. To date, no research has been done on PANDAS in autistic children. Period. Does that mean it's impossible? No, but those are exactly the types of distinctions that researchers rely on. They have to, they say the wrong thing and it exposes them and their credibility, and don't think that wahoos like Kurlan and Singer aren't just chomping at the bit for one of the big PANDAS researchers to slip up. The other thing that must also be remembered, is that to Swedo, and per her definition - there still has to be a "sudden onset". This is something that may be very difficult to detect in some autistic children. That's not to say that we all don't know of cases where the sudden onset was missed, or it was more gradual - but that is still her definition. My child's onset was extremely sudden - can still remember the date and time - but he was too young to be considered PANDAS by Swedo's criteria at the time, so he would've been called autistic. Fortunately, we were local to Murphy, who agreed with our peds PANDAS suspicions, and even went on to publish a case study on my son as the youngest documented case of PANDAS. The only Swedo criteria he didn't meet was age (4-8 at onset at the time). Age criteria is now not considered significant. If you asked Swedo 4 years ago if a 19 month old toddler could get PANDAS, she probably would've said "no" too. Medical research is tediously slow, and I'm always leery of throwing the few people who are carrying the flag for PANDAS under the bus!

Most experts also subscribe to both theories - that's why I didn't want to say they were "competing" exactly. The fact that there is a strong documented genetic connection only can explain about half of it. It can't explain the clusters that they find from time to time.

sss - there are two distinct theories on PANDAS/PANS - one is obviously genetic. Dr. M has published research noting as high as a 60% incidence in siblings where there is family history of chronic strep or autoimmune disease (we fall into that category). But there is also another school of thought that indicates it may be a particular strain of strep/infection that causes the dysfunction - which explains why you see outbursts like what was seen in Leroy not too long ago, as well as similar outburst in CT and the Carolinas in recent history (all of those were attributed to "mass hysteria" - but likely actually caused by an infection). Both theories are widely supported. My personal thought is that the cases where there is no other underlying immune problems (either genetic or injury caused) and are likely caused by a particularly nasty strain are often the cases where you may see a child recovered quickly, and never have another episode, and the genetic/vaccine injured cases are the ones that become chronic. But that is just my completely uneducated theory on the matter from all of the discussions I've had with our specialists over the years. (Full disclosure, we have no reason to believe in our case that vaccines had anything to do with our kids PANDAS onset - all genetic here.)

Keep a daily journal for all of your kids documenting behavior, tics, and anything they may have caught or been exposed to. It will be invaluable in the long run. My daughter started out with very mild symptoms - basically increased moodiness - she would cry if you looked at her wrong. It would be around for a week or so, and go away on its own. It always coincided with a bad flare for her brother, so initially we thought it was attention seeking behavior (Her brother was 26 months at dx, she was only 3 1/2 at that time - so that was a real possibility). Eventually, we realized that whenever her brother had strep, she more often than not did too (always got the whole family swabbed). She would be treated with at least 20 days of abx (precautionary to make sure she cleared for her brothers sake). Eventually, I suspected that we were seeing mild PANDAS - everyone thought I was nuts. But finally, when she started K, her brother got strep. With the hustle and bustle of her starting school, we didn't get her into the ped right away, and within a couple of days her moodiness blew up into full on fits and tantrums. No one could deny it any more. Sure enough - she had strep, and within 2 weeks of abx, she was back to herself. She stayed that mild almost 2 years - until the end of 1st grade - then she got worse. But what helped me identify the patterns early on was as soon as I suspected (even though everyone thought I was nuts), I started a journal for her too (already had one for the boy). Her case was so mild, it likely would've been overlooked for years if we didn't already have her brother and know what to look out for, and compared to him - even though she's gotten worse, it still is mild. But early intervention is HUGE for our kids.

I do think that I was "lucky" in the respect that I at least did get sore throats and fevers with my strep, so my mom always got me in to the doctor and I never really had an untreated strep infection. But Dr. K is right, it was well over 20 years ago that I had these issues, and no one put two and two together. I also think it was a different time parenting wise as well. (My mother from Spain was told not to speak to us in Spanish as children because we would turn out "slow" - a lot has changed!!!). I should note, that it took almost 2 years into our journey before we even put 2 and 2 together that I likely had PANDAS. I knew my chronic strep history was relevant, but like someone else mentioned, I think we tend to "whitewash" our childhood traumas and issues sometimes - making them out to be funny, or less relevant than they were. It started to become clear to me when I would vent to my mother and more often than not she would respond with "you used to do that all the time" and run into a story of things that I did that sounded awfully familiar. And even after Dr. B and M confirmed that I likely had it based on history alone, I still didn't connect the UTI's and kidney concerns until much later. The more I look back, the more clear the picture becomes. The reason I don't hesitate to share my personal story is this: If I could come out of it on the other side with little/no intervention for PANDAS and be a well adjusted, functional, happy, even if slightly OCD, adult who looks back on my childhood with just as happy memories and fondness as anyone else - then our kids who we are fighting for have an even better shot at getting there some day. We keep CBT going because I firmly believe that if I had that, my OCD may not be with me today. But we also focus on giving our kids as "normal" of a childhood as possible, we let them go to birthday parties, sleepovers, play sports, etc... Are we terrified of them getting sick? Absolutely. Do we take extra precautions? Totally. But we try to let them live every day of their life as if PANDAS is a small part of it for them, like a kid who has braces or wears glasses. Its part of them, but we don't let it define them. I had a happy childhood because no one knew differently, I know if my mom had any clue about PANDAS, she would've wrapped me in a protective bubble, and I wouldn't be the person I am today. It's hard for me to find that balance, but I keep saying, if I survived okay, so can my kids.

In know it's not always an option, but a local pediatrician who is at least open to PANDAS and learning about it can be your best resource. We have consulted with multiple PANDAS docs, however, it's our pediatrician that we go to when we need something quick. Because he is privy to everything that happens between us and the specialists , a situation like yours where you were already given a next step but just need a script - he would step in for us. Both of our specialists (Drs. M and have both been thrilled with how proactive our ped has been. He was far more conservative at first, but having their insight and buy-in, even on the sidelines has done wonders. Often folks tell people to get with the experts ASAP - even if they have a supportive local doc, but it's often the local docs that are far more responsive and can be clutch in critical situations.

Yes, his initial symptoms at presentation (19 months old at onset 26 months old at dx) were OCD, ODD and ADHD. At the time, the NIH didn't acknowledge that kids that young could get PANDAS (age of onset was believed to be between 4-8, they have since removed that criteria), but my son's onset was staggering - overnight, immediately following and impetigo infection. (He went from being verbally advanced to practically non verbal in the 6 months between onset and dx). The other thing that was unclear at the time is whether ADHD was associated with PANDAS or not - this was 4 years ago, so the list of "symptoms" was a bit narrower than it is now. Our ped acknowledged that 2 was a bit young to have a definitive ADHD dx, but the symptoms were clearly there. We opted to assume it was part of the PANDAS and see if those treatments helped first - but recognized the ADHD may just be ADHD on its own. It took us 3 years to finally agree to try something for the ADHD. I'm glad we waited, but I don't regret our decision. We have talked about taking him off of it now that he's doing IVIG and is doing so much better now, but honestly, he's doing pretty well, just a minor bump in the road here and there, that we are too scared to change anything for the moment!!!

I absolutely had it as a child. Chronic strep (6-8x per year) - I would get sick with it though. Was hospitalized in Jr. High because I had strep for over 2 months and nothing was clearing it - had to go on IV abx (it was there that a random nurse asked my mother if my sister ever got checked - sure enough, she was a carrier!!!). I had what chronic UTI's (or at least that's what the dr thought at the time), and would have to go to the bathroom constantly. Again, in Jr. High I was put through a horrible battery of kidney and bladder tests trying to find out why I was getting so many UTI's - it's no surprise now that they came back clear of anything (obviously wasn't UTI's but actually PANDAS). Personality wise, I was always a high achiever academically, with very little effort, so a lot of my personality "quirks" (as everyone called them) were tolerated/overlooked back then. But as a younger child, I had to sleep with EVERY SINGLE stuffed toy I owned (and there were a lot), and both parents had to tuck each one in by name, and if they messed up - the whole process had to start over again. (And if one fell out of bed in the middle of the night - the whole house had to be woken up to get everyone tucked back in.) My parents thought it was cute, and a phase (my sister who shared a room with me at the time did NOT!!) I had sensory issues, particularly with getting my face wet and when through long periods where I would only wear certain clothes - things I see very clearly in my son now. As I got older, I would make "nests" in my room/closet out of clothes where I felt comfortable. I would spend hours reading in my nests - something my parents thought was odd, but since I was reading, they didn't care much. I see the same things with my son now as well, he has his "safe corners" where he likes to go when anxious, my daughter does this as well. I would sneak into my parents bed to sleep well into my early teens, and once I stopped doing that, there would be nights where I wouldn't sleep at all. {Edited to add: I also suffered from school refusal so badly that I actually switched schools 4 times in 5 years - my parents thought I was "bored" because I was so smart and wasn't being challenged enough, but looking back and knowing what PANDAS is, I can see it is so much more. } In high school, I started to have some mild social anxiety - but I was good at covering it up. I was considered "popular" by most standards, but had very few close or "real" friends. I tended to be a "clique" on my own that could float easily to all of the different social circles. As a result, I only have one friend that I still communicate with regularly from high school - and we didn't even become close until after graduation. I did all sorts of strange things in high school to cover up my anxieties - carried a lunch box 24/7, had a small Elmo doll that went with me to classes who I "consulted" with when asked a question. My entire Jr. year in high school I carried a boquet of plastic daisies everywhere I went asking people to "smell my daisies" - when asked why? I would respond "because it made you smile". (Which was true). Again, it was tolerated by the school because I was top of the class, so they didn't care, my friends and peers just thought I was being "funny" and "wacky". Full disclosure - I started smoking pot A LOT in high school, and it really did help me function on a daily basis. In college, I got strep a couple of times, and I had a episode of blackouts my freshman year. I lost about 3 days of my life, and just remember waking up in a hospital because my roommates/friends became suspicious of my erratic behavior (apparently I was awake and functional, but have no memory of what I said or did over that time). After a week in the hospital with no clue as to what was happening, my advisor and parents decided it would be best for me to come home for a couple of weeks, which I did. I have not tested + for strep since my hospitalization freshman year. Knowing what I know about PANDAS now, there's no doubt I had it (our PANDAS experts agree), however, I don't think I do anymore. I notice no issues when I am sick or have any sort of infection - viral or bacterial. I have Anklyosing Spondylitis (an autoimmune joint disease) that requires me to be on drugs that lower my immune system - so I have gotten sick ALOT with no issues. So have I outgrown it? Yes - technically. Were there any lasting effects? Absolutely. I have also been clinically diagnosed as OCD as an adult. It does not truly interfere with my daily life, but it is noticeable. The way my house is cleaned is on specific example, and if I have not been able to perform my cleaning rituals regularly, my physical and emotional anxiety levels visibly increase. (It's the one compulsion my husband tolerates unconditionally - his theory is if we have kids who react badly to getting sick, there are worse things to have than a mother who insists on bleaching down everything in the house weekly!!!) Would I have had OCD as an adult if I didn't have PANDAS as a kid? Who knows, I was always treated for strep, so I can't say that my PANDAS went completely untreated, but I was always only treated for the current infection, not what we would do for PANDAS. But I suspect that my OCD might not be so bad if we had known about and treated PANDAS as a kid, or if my parents would have noticed that my "quirks" weren't just phases and were signs of a bigger problem. My OCD is the reason that I insist on CBT for my kids now in addition to the medical interventions. Teaching them how to cope and survive - even if the OCD comes and goes - is what I wish I would've had growing up if we had known.

My son takes a low dose of Vyvanse, which is also a stimulant. We opted to add it when his impulsivity got to be flat out dangerous (still running into the street, taking off in parking lots, etc...even at 5 when he knows better). The first dose we gave him was a disaster - it ramped him up so badly you would have sworn he was freebasing pixie sticks. He did not stop talking for several hours. However, after that first dose, he has done very well on it. We have been on it for just over a year and it has helped the ADHD a lot. His OCD and tics are managed by the abx and IVIG, but the ADHD was the one thing we just could never get to resolve.

We had no flare post T&A, it was wonderful. It was the first time we had seen our son at 100% since his onset 2 years prior. About 6 weeks post op, we saw the ADHD creep back up (which we chalked up to him being 4 and the excitement of the Christmas holidays combined with being cooped up in Grandma's small house in the cold weather). But unfortunately, it was the first signs of a flare, which ended up being caused by a new strep infection. It is still possible for them to get strep post T&A, so I wouldn't discount the possibility that this in not a post-op flare but could be a new infection.

Having the results will also help the staff at the new school understand and relate to how he learns best. I would want the results.

mommy2mcl - I'm confused by your statement " I would think that as you build immunity the flares should not be as bad." It is not the strep itself that causes problems, but the immune systems response that is the issue, so that statement confuses me. The basic function in PANDAS is that the body mistakes the brain as being strep - building an immunity to strep requires exposure - which triggers the attack on the basal ganglia, causing the flares. Flares can last long after the infection itself is gone because the bacteria itself is not the issue. There are some kids who have reported significant improvements at puberty, as well as in early adolescence/adulthood - but that has more to do with the changes within the immune system itself vs. built up immunity. We have found after 4 years that interventions have helped reduce severity in flares (long term abx, T&A, IVIG), however without those interventions, flares have gotten worse with each subsequent exposure/infection. In my daughter's case, her flares were fairly stable with each new infection (my kids have had chronic strep problems), and after 2 years, she entered the worst flare we had ever seen - we still have not recovered her 100% from that flare 9 months later. As for teeth - it's really hit or miss for us with them causing flares. Sometimes they just cause minor dust ups - but I've found it really depends on how long the tooth has been loose (longer = worse flare).

pr40 - for us, we see a rise in rigidity when a flare is starting, refusal to eat foods, get dressed, brush teeth, difficulty switching from task to task. In isolation, a lot of this can be written off to a typical 5 year old having a bad day - but they are very early signs for us that he may have been exposed to something or coming down with something. That's not to say that we have not been hit with the total blindside exorcist tantrum rage straight out of the box with absolutely no warning from time to time too...

We kept an extensive log of symptoms/behaviors/triggers when my son was first diagnosed, and it helped us create a very specific plan tailored to him when he starts to flare. If you're new to the diagnosis, and haven't considered keeping a daily log - I highly suggest it. We were able to see distinct patterns and differences in how flares begin for a new infection vs. exposure For example, wetting the bed = positive strep culture and full flare EVERY TIME. We no longer even wait for other symptoms to develop. Wetting the bed is the first thing we see with a new infection. Our logs were so detailed and the pattern has been so clear even our ped doesn't question when I call and say "he wet the bed, we need to be seen ASAP". Using our logs, we have been able to tell that flares from exposures usually start to subside on their own about 5 days post exposure (typically find out about exposure on day 3 or so, but if there's no wetting the bed, we wait and see). Flares from loose teeth/new teeth are a little less predictable - all depends on how long the tooth has been loose and it takes for the new ones to cut. (These are the hardest for us.) Our approach is this: start immediately with the CBT techniques he's learned for all of his compulsions - even if they don't seem to be resurfacing, it gets him in the frame of mind that we will be enforcing the "no Harvey" rules (his name for his OCD). We modify dinner time rituals/rules - not eating is his most worrisome symptom, and one that we don't like to mess with. We know even at his worst, eating at the counter vs. the kitchen table is easier, so we automatically just start doing that (which we typically only do when one of us works late) as well as modifying the menu to include all of the things we know he won't fight. Makes for a week of crappy eating for mom and dad (mac and cheese again! yippee!!!) but it keeps him eating as long as possible. We also switch our daily ibuprofen doseage from one every morning to one in the AM and one in the afternoon. If the flare continues to deepen, we go to every 6-8 hours. If symptoms don't seem to start to improve after 5 days (and there was no bed wetting prior to that), and we hadn't been notified of a recent infection at school or elsewhere, the whole family is trucked to the Dr. to get checked/swabbed for strep. We normally wait until day 5 because we know that's when his exposure flares start to subside. If it's a loose tooth, we still get checked around day 5 or so just to be safe. If there is no sign of strep (my kids don't have any other triggers luckily), we consider changing up abx temporarily, or continuing to wait (our ped is very PANDAS friendly) - it's usually our decision and we make it based on how functional he is. If he is still able to stay in school all day and continue to function outside of the home, even if it's difficult at home, we may stay the course (especially if it's a tooth related flare) and continue the regular ibuprofen dosing. If he's not able to attend school, it's an automatic that we change up abx. Again, our plan is very specific to our son - and it's based entirely on what we were able to learn about his patterns/flares from keeping detailed logs. My daughter's logs were never so clear cut, but until last year every flare resolved within 30 days of starting abx, so it was a non issue. We are back to logging her patterns now that she's taken a turn last spring. We found some tell tale signs of a flare (hiding/sleeping in corners), but still are looking for other patterns too.

I posted a link to it on my personal FB page - I grew up in Buffalo and have lots of friends and family still there- many of them would benefit from this presentation!!!

My son had his onset in May 2009, diagnosis in January 2010, but did not receive his first IVIG until April 2013. We opted to treat with abx first, and have his tonsils and adenoids removed as well. We finally decided to pursue IVIG when abx would only recover him to about 85%. His first infusion was a 100% success. Immediately. We didn't see any regression at all. It was amazing. He has continued to do well with infusions every 8 weeks or so. He got his first strep infection in December - first in over 10 months - a new record for him. So we have seen success with IVIG even though we did not do it immediately.