MMWG

The only other thought I have is to use advil or an equivalent anti-inflammatory while you are figuring out what to do. I think many of us have done this til we can get an episode under control--the thought being that pandas causes inflammation in the basal ganglia (leading to the behaviors you see), and an anti-inflammatory may help tone things down. Hope things are better soon!

We almost never have a fever here. One time, the second case of strep after we were diagnosed, he spiked a fever of 103. Otherwise, I can remember two other fevers in his whole 6 years. He also never throws up. He just doesn't react the same way to germs other kids do. He rarely gets "sick" in the traditional sense. So instead I play Dr. House, trying to determine what is actually a sign he is sick (and we wonder why so many kids don't get diagnosed!). The only way our doc knew to test for strep initially was the smell of his breath and his crazed behavior. No fever, no sore throat.

Penicillin didn't work for us, and neither did Zithromax (we had a week long improvement, then a tic appeared again), or Augmentin (which the doc tried given it's success for Sammy). The only thing that seems to help here is cephalexin, or cephidir (sp?). Trial and error, unfortunately.

Is it an over the counter?

What is so odd is that we had all these chew tubes from 2 yrs ago before he was diagnosed (he was 4). Later that year I realized we didn't use them anymore, so I pitched them. Now, it's just like before. I need to track data on it to be sure, but I think for us it happens on the backend of an exacerbation--the last two times he had a bit of a mouth tic (sucking in the side of his lip), and then it transitioned to chewing his fingers and the tic went away... I am positive it is somehow connected, as it comes and goes....

PowPow- what are your doctors saying about the +ANA and increased sed rate? My daughter also currently has a positive ANA, increased sed rate, and arthritis symptoms (in her legs). My son complains of leg pain very often. It was one of the first and only signs of the strep that we detected just prior to his diagnosis. He often says his legs hurt so bad, and asks us to make them better. I guess I just assumed it was due to the autoimmune nature of PANDAS...I wonder how common this is.

We went to the library yesterday to get books for our volcano unit in homeschool this week, and I always let my son play the computer games in the children's section for a bit while I collect the materials. He is always very good, doesn't bother anyone, and usually it's empty there because most other kids are in school then. Yesterday he was unconsciously putting the headphone cord in his mouth while he played (for some reason when he is coming out of an episode, the child chews everything-his fingers, his sleeve, etc--like he was a two year old, not six. Always been that way). Anyway, the librarian corrected him (I didn't see it, his back was to me) and told him "it was not sanitary" (which was funny, what six yr old knows what sanitary means?). Anyway, he quickly took it out of his mouth and kept playing, and it was fine (of course it isn't sanitary, and we don't need more germs!). Anyway, I thought about how much this kid has dealt with, and how putting a cord in his mouth rates about a 1 on my scale of things he does that concern me. I am contemplating having t-shirts made that say "I have an irritated basal ganglia. Buzz off." Who wants one???

Just my two cents here, I am not sure of the specifics of your disastrous school situation. For my son, a school setting was almost a guarantee he would have a reaction. Of the 2 preschools we had him in, the one with a bunch of kids in a small space made him go out of his mind. The small one, with just 5 kids, and a huge room, was manageable. When we started kindergarten, it was still "small" under normal definitions. but there were 15 kids in a very small space. It was a total no go. He is a very social kid, loves other people, and is smart as a whip. But put him in a confined space with a bunch of kids, and he displays every PANDAS behavior he has--fight or flight, anxiety, compulsions/defiance (doing what you just told him not to do, compulsively. teachers love that). It was heartbreaking to me, because everything about my kid makes me know he would love school under normal circumstances. But, we don't have normal circumstances. There was nothing I could do, or the school could do, to prevent him from having that reaction. I suspected a combination of bacteria/virus triggers in the environment (all those germy kids) and also stress. We pulled him out, and are homeschooling him (something I never thought we would do, but sort of love, as hard as it is). Our doc consulted with a PANDAS expert about what we were experiencing, and she told us that she was not surprised--that a school situation may just be too much for a PANDAS immune system to deal with. Our son is still very young (6), and she said if we could swing it, having him homeschooled til he is a bit older would be a good idea, just to prevent more reactions. It's not for everyone, but it made me feel better to know the school situation was not our fault, per se--and nothing we could do was going to make it tolerable for him. We did put him on some anxiety and adhd medicine after his time in kindergarten, just because he seemed miserable and not himself. I don't know that it has helped, I think being away from the environment has helped the most. Dealing with a school situation has always added so much stress for us, and I for one am thrilled to not have to deal with it anymore. The teachers can be wonderful, but I know it exhausts me to deal with understanding PANDAS, so I can't expect them to be able to handle it on top of everything else they are dealing with. My mantra is low stress--so far, it's been better for him than psychiatric medicine. Hope you find answers, and wonderful people to help you navigate this.

The thing about PANDAS is that it causes neurological reactions--and when you think about it--what DOESN'T qualify as a neurological reaction? Our doc pointed this out when we brought in our son for what we thought was a bladder infection. It wasn't, but he chalked it up to PANDAS. I know we don't want to always attribute everything to that in fear of not finding another valid cause, but the brain controls pretty much everything. So it seems like this could qualify.

For us, the answer is definitely yes. Our initial episode (well, probably not, but our episode that led to diagnosis) was triggered by strep--and had a positive strep culture. The second did as well. After that, it was game on. We had a reaction from an ear infection, a reaction when someone we were with had the flu (though our son did not have it, nor did he come down with it)--pretty much anything viral or bacterial can trigger his PANDAS. If you read Dr. T's comment to the WSJ article--thread above---it notes that the docs are finally realizing it is not just strep--it's all kinds of things for many kids. Our doc said the current thinking is that viruses and bacteria are now "toxins" to our son--that he is so sensitive to them that he can detect them before any culture or test would or could. That once his body senses the toxins, he has a neurological reaction.

We are on preventative cephalexin 2 x day (1 tsp). We just had a suspected flare up so the doc doubled our dose for 10 days. We are about done with that but we have loose stools and now they are green. I have some high quality probiotics from the pharmacy, but I have been hesitant to give them because I can't remember how you are supposed to time them to make sure they don't interfere with the abx. My doc is not a believer in probiotics, so there's no point in asking him. I would like to work them into our regular routine, but particularly now because of the higher dosage. The kid has belly issues anyway--he is on miralax everyday. The miralax + probiotics seemed to be a bit much for him, so I have to do some tweaking... What's the suggested timing?

Met with our great pediatrician today for a consultation--we wanted to talk about whether we were doing all we could to manage his PANDAS. I won't go into detail about how much I adore our pediatrician, other than to say he is very responsive, open to my ideas and input, and always trusts me when I call and tell him something is up. We have developed the treatment plan together, and he never treats me like I am crazy. He has me tracking data on reactions and treatments so we can make sure we are doing what works best. He was the one who first diagnosed pandas when our son was just 4, and we thought our kid had lost his mind. With no fever, no sore throat, he looked at him, smelled his breath, and said, "I think he needs a strep test..." Anyway. I wanted to pass on something interesting he shared with me today. He was discussing our son's case with a colleague at a conference who is one of the leading PANDAS experts. He was talking to her about how we rarely get a positive strep culture anymore, even when we are clearly seeing pandas symptoms, and asked for her thoughts on that. She told him that the current belief is that some PANDAS kids will react to incredibly miniscule amounts of "toxins" in their environment (toxins being any bacteria and likely viruses, in our case), and that once they sense the toxin, they can show neurological symptoms within minutes, hours, or days. She said it was like having an amazingly sensitive antennae--one that can pick up on things that other people don't notice and aren't affected by. If they are exposed and catch the bacteria, and then it is given time to develop, eventually it would show up on a culture (and in our case, if we let it go that long our kid would be in rough shape). This confirms what I have felt all along. I describe it to people as almost an allergy--that if you were wearing a perfume I was allergic to, I would react then and there. It is the same way for our son with bacteria and viruses--it can happen out of nowhere. It is nice to have medical experts confirming what mommy has suspected for a long time!

I am so sorry. I'm not sure how things work at your pediatrician, or what your relationship is with him/her, but could you contact the on call pediatrician at your practice and explain the situation? I would imagine her file would clearly state what kind of abx she needs to be on for her condition. I never deal with the other docs in our practice either because they don't appreciate our history. The one time I did have to talk to one over the phone when we were out of town she ended up prescribing the wrong antibiotic even after I told her it was not effective for us. I talked to the head nurse and she got it all straightened out--but I had our pediatrician flag our file that he should always be called if there was a strep issue. They should be able to track down your doctor!

I read the article--I am assuming everyone who posted on this thread is doing this protocol with the assistance of a homeopath? That this isn't a thing one attempts on their own?

thank you so much. i think i needed a reminder that there likely isn't one magic thing that i need to keep searching for. we were lucky that we had a diagnosis at age 4, so since then we have been on top of every bacterial infection within days (sometimes hours!). We have a wonderful pediatrician who is open to my ideas and also willing to reach out to his colleagues who are more expert on PANDAS. I just feel so much responsibility to make sure I am not missing something--being his case manager, his advocate, his mommy, and now his kindergarten teacher as well! There is much to be said for many of the suggestions you all made. Thanks so much. Meg

Sorry I am a huge board hog. In case I am not happy with the route my ped wants to take, I am checking out long distance options. Dr. B is in my insurance network, although still far away. We haven't pursued the immunologist route yet so I am interested in thinking about that. Anyone have any idea how long the wait is to see him?

My last post yesterday made little sense, so I am not surprised no one responded. Thinking more clearly today. I am concerned our PANDAS is becoming chronic rather than episodic. We were diagnosed almost exactly 2 yrs ago by our pediatrician. We have had 2 documented cases of strep, and several exposures that were treated with abx. Our ped is very open and willing to try different protocols to find what works best. It has always been my sense that each episode was a bit worse than the previous one, and the one we had when he started kindergarten (not sure if it was strep induced or stress induced) was the worst. We still have some tics and anxiety from it. Now we seem to be in another sort of flare up with resistant and defiance through the roof. As I mentioned in my last post, my pediatrician is well connected and consulted with Dr. M (I think) at a conference last month. I trust him, but do not think we have figured out how to best protect and treat my son yet. I put in a call this morning about the flare up--he usually takes my word that something is not right and ups the abx, since our strep tests tend to come back negative since we are on preventative abx. I am wondering if I should either ask about running some bloodwork/immune panel, as that seems to be becoming standard practice with some of the top pandas docs? Ask him to consult with Dr. M again regarding her advice on other things we could be doing? We are nowhere near Florida, but if I thought it would help, or if our pediatrician thought it would help, I would take him down there to see her. I don't want my little boy slipping away. We have him on adhd meds because he was so agitated and they make him so sleepy he is napping on the couch at 11 am in the morning. I hate it. I feel like I am drugging him and I don't know how much the medicine is really helping him anyway. I feel like I have to know the next thing to do, and I am stumbling in the dark here.

Hello friends-- Here I am, back again. We still haven't totally pulled out of the very bad exacerbation we had in Sept when our son (age 6) started kindergarten. We pulled him out after 2 weeks and have been slowly trying to get back to our normal since then. This time it has required him taking some low dose anxiety medicine as well as start some medicine for adhd. We proceeded cautiously with them but have found they both have been somewhat helpful. One of the things that I always notice about our PANDAS is that the anxiety/OCD/adhd/whatever tends to manifest in a locked-in defiance. I used to interpret it as naughty, even though he would feel horrible about it afterwards. He would be able to tell you before and afterwards what he should and should not do, but in that moment, there would be nothing you could do short of "shocking" him out of it--we have tried reasoning (no deal), all good solid parenting techniques, and for as long as I can remember, only something dramatic would snap him out of it--a spanking, screaming, or a huge loss of big time privileges (nothing subtle or psychologically reasonable would do it. When he would demonstrate refusal at school, we would initially respond by punishing him, and then finally realized the refusal was a manifestation of severe anxiety--a fight or flight response. His school director, who is also a school psychologist, was the one who pointed out to us that there was nothing intentionally naughty about what he was doing--that he seemed locked into having to refuse or leave a situation--almost like he was terrified to engage or comply. Like in that moment, lack of compliance was a compulsion. He had to resist. That is when I started to think it was more of an ocd/anxiety pattern. We ran it by our pediatrician, who also treats his PANDAS, and he agreed. We are homeschooling him now. Our pediatrician deferred to our judgment about this decision, but also talked to a PANDAS expert (I think Dr. M, not 100% sure) that he knows about our kindergarten experience. She told him that if we could swing it, homeschool may be best for him til he is older--3rd or 4th grade--because his immune system may be stronger then. I believe the rationale was that with every exposure, his baseline antibodies rise, and too many exposures make it tougher each time to bring that baseline down. I felt this rang true for us--each exacerbation seems tougher to get out of, and this last one has been the worst. He is on preventative antibiotics. He went off of them for a week because he was having stomach problems, and then was back on them again. His exposure to other kids is pretty limited--he just started wrestling, and we try to have a playdate each week--we also had some family here for Thanksgiving. ANYWAY (sorry, this is not flowing coherently)--this past weekend he threw up at my in-laws (only the second time in his life), and has in general been ornery the last week or so. I figured his stomach bug may have caused some inflammation. Tonight it was time for his bath (which happens every night) and he refused and locked in--ran to his room, shut the door, and no matter what I did, he would not get in that tub. He loves taking a bath. I stayed calm and told him to unstick his brain and think about what was going on, but he was too far gone. He raged and refused and it wasn't til I grounded him from his video games for 2 weeks that he got in the tub. I thought that would be it, but the same thing happened again when he had to brush his teeth (which usually is no problem) and when he had to take his medicine (usually no problem). Even getting into bed. He kept saying his brain was broken and asking me to help him fix it so he could get his video games back. I have seen some good discussions on here about defiance and resistance. I know some docs would say this is oppositional defiance, or something like that, but I really don't care what it would be called. I think all labels become meaningless in our world--to me it all stems from inflammation in his brain, manifesting in all of these ways--adhd, anxiety, ocd, defiance, whatever. My question is: do we need a strep test??? Since we went on the abx, all our strep tests tend to be negative, even when something is obviously wrong. Our doc says it's still possible to catch strep while on abx, and that it might throw off the culture.

Hello wise and supportive friends-- I feel so much on this board the weight this condition has on all of us...that we have been put in the position to not only be parents, but doctors and teachers and case managers. Just when we think we are the right track, something triggers and episode and we find ourselves back where we started, or sometimes, even farther back than that. After 2 yrs, I felt that we were being proactive in having my son on preventative abx, and proud of myself for requesting them from our pediatrician and making a coherent enough case to be listened to. We were doing pretty well, well enough that we were all happy, not stressed, and enjoying life, and felt like we were in control of this condition, rather than it controlling us. In the blink of an eye, it all changed again. We started kindergarten--something millions of kids did a month ago. We weren't even too concerned about it, although that was naive, as school has always been a stressor. But it was liking throwing my child to the wolves. In the weeks that have followed, our lives are 180 degrees different. We have no idea whether it was bacteria, or stress...but it was something.My child is horribly anxious, and for the first time I have begun to see how that anxiety is manifesting in his difficult behavior (the thread this week about anxiety manifesting as refusal and defiance hit very close to home for me), his tic has returned like wildfire for the first time in two years, i have seen signs of ocd for the first time, and he is agitated and hyper much of the time. My little boy has gone away. Every second of every day since this happened I have been trying to figure out how to stop it, and how to turn it around. We pulled him out of school. We took him to his doctor. We put him on anxiety medicines (two different ones now, neither of which are working), we tried a heavy course of antibiotics (did not work--but doc wanted to try a different type than has worked in the past). We have tried to create a low stress environment. We have told our family and friends that he needs extra love now, that there are many things going on with him that we are trying to help him through. We contacted a CBT that knows about PANDAS and asked for her suggestions in helping him with his behaviors. She gave us some great resources and we plan to see her in the next few weeks to see if she could help give him some more tools to help deal with his feelings. I don't know what else to do. Every day I think of something else that maybe I should ask about, or request, or do. Maybe he needs the old kind of antibiotic that worked for him in the past (he was given it only because we thought he was allergic to penicillin). Maybe that would drive our doc over the edge and he would be less willing to work with us next time. Maybe I should have him tested for other infections. Maybe that is not right. Maybe there is some magic abx or dosage or treatment or test that if I just think enough or read enough or search enough, I will find it, and I can have my boy back. There are days I wonder if we are crazy, and whether there is something else going on altogether, though we have several confirmed past strep tests that have coincided with surges in behavioral symptoms. That even though I know it is probably unlikely that a tic, severe anxiety. severe handwriting problems, agitation, emotionality & touches of ocd would occur in one little child concurrent with confirmed strep infection and it would be something other than PANDAS, I still question myself. I saw the locked thread up earlier, and I saw myself in every post. I feel like it is all on me to get him back. I feel like every decision--to call the doc, to not call the doc, to discipline him and hold him accountable or to decide his behavior is out of his control, to test for something else or not test, to give him probiotics or not, to give him probiotics with s. thermopo-whatever or not to bother looking, is up to me. To listen to the people that swear he just needs some diflucan and some supplements and he will feel much better, or to ignore them because my doctor and the health food pharmacist tell me that is not the case, to surf on this board at 11 pm at night or to step away because sometimes it is too much, to keep looking or to stop, to keep pushing or be patient--those are all my decisions. When I see progress, I am so happy I am smart enough to know the direction to pursue. When I don't see progress, I beat myself up for not doing enough, and not having found the key to the puzzle. We are a month out from this episode beginning, and no end in sight. Somehow, he is happy, but tells me he is not normal, that his gears are not working right...things a 6 yr old should not have to say. I cannot remember how long it took us to crawl out from under this the last time it was this bad, as I have blocked most of it out. I do not know whether I should just give it time, and try to be patient, or whether I have missed something and should be making another phone call or reading another article, just in case it helps. This is more than anyone should have to deal with. There are many, many days, when I cannot get up and do this again, but I do. There are many, many days when I want to scream at how unfair this all is. I see my husand and myself slipping away, not taking care of ourselves, despite knowing we must to take care of him. But all of our energy is spent. I love my boy more than anything in the world. and more than I knew I could love another person. He is worth all of this. I just wish it wasn't so hard for him, or for us. Much love and support to everyone fighting this battle.

Well, in preschool we were lucky enough to have a teacher who looked at the intent--why is the child refusing? So we made it through. Kindergarten this year we tried to explain and prepare, but he had been so healthy all summer that we were optimistic he would engage and participate. We were very wrong. The environment was so chaotic and he was so overwhelmed and anxious, we had never seen anything like it. This is when we realized his refusal was a by-product of anxiety, and by then he was over the edge anxious--nightmares, panic attacks, etc. It was a flexible school but he just would not engage, and if they tried to make him, he would meltdown. Fight or flight. There were other issues going on in the school, including some violence in the classroom (a little boy attacking him everyday, which did not help his anxiety either!). So we pulled him out. If I thought time would have helped the situation, I would have left him there and helped him adjust. But I was there a few days to help with the transition and it was a mess. I honestly thought his issues were about 60% of the problem, and the school disorganization was 40%. His health was declining rapidly, so we decided this year to teach him at home. But we are still fighting this battle--we want him to mind and to be respectful. I know his brain is telling him to do what he wants, not what we tell him to do, and we are working to break this pattern. Wish I could be more helpful.

This is all fascinating to me. My son has always been fairly defiant, even though he is extremely worried about making everyone happy and getting a "good report". It was driving me crazy trying to understand how he could know what was expected, and feel so badly when he did not do what he was asked, yet none of that mattered in the moment. Our school director was finally the one who pointed out it was anxiety driven--that he wanted to comply, but could not do to his anxiety. It was such a revelation to me...It took me a long time to think through this, as it looks like defiance--but in reality, his "fight or flight" was surfacing as avoidance and refusal to engage at school. I still struggle to tell when it is an anxiety response or a compulsion (especially when he insists on continuing to do something after we have told him to stop), and when he is being naughty and defiant (he is 6). Would love to hear more from people on this issue...

We just finished a strong round of augmentin, and prior to that were on preventative penicillin daily since May. Our son has had chronic constipation since he was a baby, and is now up to 2 capfuls of miralax a day (if we miss even one day, he is backed up). With this last round of augmentin, it was so strong it kept causing him the opposite problem, so we cut out the miralax. Of course, now that he is finished, his stomach is a mess--we finally were able to clear him out yesterday. We have never really used probiotics--I try to give him kefir or good belly but we aren't regular with it. Given his extensive antibiotic use and his chronic tummy problems, I know we need to look into probiotics (and maybe beyond that--just read the ultramind solution book, which is enough to give anybody pause). Anyway, I want to start with probiotics before I go on to explore other supplements or food sensitivity issues. As of today, we are not on any abx, and have just started an anxiety medicine to help him with the severe anxiety that came with his most recent exacerbation (why he was on the augmentin). I feel like our pediatrician is great at working with us on abx and medication, but has no tolerance or patience for any discussion about holistic health approaches. I have asked him several times if we should try probiotics, be concerned about yeast, and what alternatives there might be to this huge amount of miralax, and he is not interested in discussing those things. I believe in traditional medicine, but I also know my little guy is still not doing very well, so I want to look into these "alternative" issues. Could someone suggest a probiotic plan we could use? He weighs 55 lbs and is 6 years old. I am also considering looking into zinc and fish oil, but I think this could get overwhelming quickly, so I am trying to start slowly. Thanks very much.

Sorry to be a total board hog. I was reading through some past posts and saw several people say their child sometimes gets worse before better. In the past, when we went on a abx, there was a slow gradual improvement of behaviors. This time, on augmentin, we saw not much either way for about 3-4 days, and now we have a rush of emotionality and a slight up of the tics. I am concerned, but we have about 5 days left on it before we check in with the doc. Can a change be good, or is this a sign we aren't on the right track? I know no one knows for sure, I just am wondering if we are stirring something up that needs to be stirred up... Okay, no more posts from me this morning, I promise.

is stay home and take care of my little guy. We are homeschooling him now, so I am already home more than normal. But here it is, 6 am, and I have not given thought one to work. I just want to stay here and make sure he is okay, and wrack my brain for the millionth time to see if there is anything else that we could do to get him out of this exacerbation. Nobody gets it. I don't like knowing more than doctors. I don't like having to explain my child to people. We are having company this week (relatives) and it is the last thing I want. I just feel like if I work hard enough at this, I can find the thing that will help him. For so long, I've been trying to figure it out. When he was little, we thought he just needed a regular nap. When he got a bit older, we thought it was sensory sensitivity. It was always a mystery why he was so intense and why certain days or weeks he was so agitated and others he was not. Still is a bit of a mystery, even with our pandas diagnosis. I don't know whether our last episode was stress induced or bacteria induced. I don't know anything. And I see these other parents in back to school bliss, signing up kids for soccer, not thinking twice about whether their kid could handle certain things or whether certain environments would make them sick...i think probably i should talk to someone to deal with how sad all this makes me, for him and for us...but you know what? then i would end up explaining it to a psychologist--this is what happened with my psychiatrist. we spent most of the time with me answering her questions about his condition. The only thing that would help me is finding someone who could help him.

Kephlex has been the best for us, not sure why he doesn't want to use again now. However, i do remember the tic issue was the hardest to get rid of...last time we saw it it took many months, and one day it was gone. It's like pulling him out of quicksand. The emotionality is so tough to watch--we spent so long getting him to a place where he was mature enough not to cry whenever something didn't go his way, and now we are back to square one on that. Now there is even more of an anxiety bent to it--if we reprimand him, he is sure no one loves him and everyone is mad at him Poor guy.