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YES, Omnicef twice daily

Very bad OCD 5/2 -5/7. (Negative culture, normal ASO-- but brother tested positvie). Antibiotics started 5/7. Great improvement by 1- 2 days later. Compulsions subtle and mild ( but still present) 4 -5 days later-- mood was calm. Now 7 days later symptoms are increasing again (but he's also away on a trip with his father and friends-- so different diet, different sleep, not routine). Do you think the increase in symptoms is because of the change in environment and/or is it the antibiotic effect is wearing off? Or maybe this is the natural course of things. We had not a flare of this magnitude in over year so I don't know what to expect in terms of what to see as time goes on. I wasn't expecting an immediate full remission but I didn't think I'd see another uptick so soon. Is it "normal" to see increase in symptoms after only 7 days? Does this negate the possibility of PANDAS (Dr. had said probably PANDAS because he responded so well and so immediately to antibiotics).

PANDDAS Parental Agitation Never Disappears Disorder Associated with Stress!

Thanks so much to ALL of you for helping me with this. I suppose its more that antibodies trigger other antibodies which ramp up and cause an inflammatory response in the brain. Elementary version: strep is identified by the persons immune system. The immune system ramps up its antibodies in response. Two such antibodies produced are ASO and antiDNase-B-- they are just mere players-- markers. The antibodies that are produced ramp up the rest of the the immune system. The system mistakenly causes inflammatory response in the basal ganglia.... OCD exacerbates. We see a rise in ASO titers (not the level-- but the rise) correlate with some PANDAS cases. The rise indicates that strep did indeed trigger the above reaction-- the entire immune response- causing the inflammation et cetera. Conversely then, shouldn't a non-rise indicate that antibodies were not formed in response to the strep? And wouldn't that mean that the trigger was not released? Meaning that the chain of events to cause more antibodies and more inflammation was never was set off. YES!!! If the irritant is something else-- like a virus or allergies or whatever---different antibodies will trigger a similar immune response causing the same inflammation causing the same symptoms. So that makes perfect sense-- ASO would not rise at all. I get that. But in the case of PANDAS Strep Detectors-- you would still think that you would see an ASO rise as part of the trigger of antibodies that sets the whole entire system in motion. Like Nancy does in the second post of this thread. I'll let the issue be-- I am sure i am missing A LOT and I apologize to the veterans of the group. Am just trying to make some teeny bit of sense out of this mess!

well at the very least-- the antibodies are the ones that set off the immune response that damages the tissue. Either way-- you would see that the antibodies were there-- doing something.

I'm so sorry-- I thought the hypothesis in classic PANDAS (strep induced)-- was that it WAS the antibodies (formed in response to strep) that attachked the basal gaglia. See below from NIMH. Am I missing something--- be patient with me :-) "What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea."

Yes, it makes sense-- the allergy-- the reaction. I guess I am not fully understanding the mechanism of injury to the basal ganglia. If it's the antibodies that attack the basal ganglia -- then a very elementary view would assume that you would always see a correlating rise in titers-- as in Nancy's case above. The rise in antibodies triggered the OCD response. The titers would indicate that the body is reacting to someone else's strep--as if it were in their own body. In a weird way- that actually makes sense. Its' the other view that is my problem. Is it still strep induced PANDAS if you see NO positive culture AND NO rise in antibodies? Certainly there might be no rise-- if it's not strep induced-- it's something else like mycoplasma or whatever. But on a personal note-- since Dr. K thought the correlation with my DS's brother's strep-- was indicitive-- then my question remains--- If it's the allergic reaction to strep--why did we NOTt see a titer rise. But yet we still saw a dramatic excacerbation. So in the case of peanuts-- you don't see a rise in antibodies of course. You do see a difference in their IG panel-- histamine response et cetera. Maybe it's possible that the antibodies are not the true offenders after all. (they could just be a side note in some PANDAS kids). Maybe it's the TOTAL immune response--- in totality-- that attacks the basal ganglia. I am going in circles!!! Has anyone studied the effect of PANDAS children-- on the MOTHER!!! (premature aging...)

Thanks Nancy--- that makes sense. The titer rise explains that the antibodies react such that they attack the basal ganglia. My ds titers were normal (48) but reacted when his brother had strep. So maybe it was coincidence? I'm not ruling out PANDAS since ds still clearly has exacerbations. But maybe his brother's strep was not the trigger???

Does anyone have any theories as to WHAT the MECHANISM OF ACTION would be when a PANDAS child reacts to another person with strep? I'm assuming- as I've read on this board-- that a PANDAS child can react even if they don't have documentable strep of their own (i.e culture negative and titers WNL) (but perhaps a history of strep). (still haven't had our phone consultation yet so I still have so many questions).

Thank you both. I agree, I don't 'need' our doc to believe-- but it would be nice-- especially since I'm questioning myself all the time :-) I'm fond of black and white-- and hate gray! I suppose after I talk with Dr. K, I'll feel better. And maybe an antbx trial or steroid burst will help us piece the puzzle together. EAmom-- thanks for the links!!!-- very helpful. Nicklemama- did your son have a good response to IVIG? This forum has been so supportive. Thanks to all!

Hi Everyone, To recap ds has had strep in the distant past-- both perianal and throat. First signs of OCD at age 5--then again at age 7 and now again at age 10. Very episodic with OCD. Hyperactivity more prevalent over the years. December we noticed that ds has marked increase in rage and hyperactivity. Our younger son tested positive for strep 2 weeks prior. but my ds's cltx was negative and his ASO was 50.8 (0-200 normal) ( this was drawn in Jan..-- after the episode was already over). Now, the last two weeks-- rapid onset "just right" OCD. Again, younger son tested positive for strep (with symptoms of fever...). But AGAIN my Ds was tested during the episode this time and his throat culture was negative and ASO is 48. AntiDNase <1:60. Dr. K email consult thinks ds may have started all of this at age 5. Of course-- our pediatrician wants documented current strep associated with episode since the NIMH criteria require this. I know from reading that the titres and cultures do not necessarily rule PANDAS out. But how do I talk to my peditarician about this? Are the titres considered "low" or "normal." We have phone consult with Dr. K soon and IG panel pending. In the meantime I feel like I am going crazy myself! While I don't want my son to have any disorder--- I found myself kind of wanting the strep or titres to come back indicating a connection.

Thanks for all the other replies. I had and email consult with Dr. K and he believes it is “rather likely” that my son has PANDAS—given the length of time between episodes (which I guess are exacerbations) and the association with strep in the family. We are starting more bloodwork including IG panel…and will follow up via phone with him. So we are on our way…He believes our first issues was at age 5. My son is 10 now. If this all turns out be true, I'll be kicking myself to have not uncovered this for 5 years! Interestingly he said that NC has the highest incidence of PANDAS. WHY????? On to my question: Can your PANDAS children hide their compulsions? At home, my son will be touching and tapping all over the place when he has an exacerbation. “Just right” OCD. Or another possible variant--- very hyper and out of control. When he’s with his peers he still with do the touching and tapping—but he tries to disguise and hide the compulsions from his friends and while at school. He’s fairly effective. I notice the “touching” but that is because I’m watching him very closely. For example if he “needs” to touch something a few times with his feet. He will pretend to bend down and look at something—allowing him the extra time to touch his feet until it “feels right.” If he has to turn his head, “he will do so slowly” as if to really be looking at something. With the hyperactivity exacerbation, he is less likely to run full tilt crazy as he does at home—but it manifests itself in incessant talking or aggressiveness. (his peers do notice this). When it’s not a clear exacerbation and he is just baseline/borderline somewhat impulsive or hyper at home—he is able to completely change when a neighbor comes over.

Thanks for all the other replies. I had and email consult with Dr. K and he believes it is “rather likely” that my son has PANDAS—given the length of time between episodes (which I guess are exacerbations) and the association with strep in the family. We are starting more bloodwork including IG panel…and will follow up via phone with him. So we are on our way…He believes our first issues was at age 5. My son is 10 now. If this all turns out be true, I'll be kicking myself to have not uncovered this for 5 years! Interestingly he said that NC has the highest incidence of PANDAS. WHY????? On to my question: Can your PANDAS children hide their compulsions? At home, my son will be touching and tapping all over the place when he has an exacerbation. “Just right” OCD. Or another possible variant--- very hyper and out of control. When he’s with his peers he still with do the touching and tapping—but he tries to disguise and hide the compulsions from his friends and while at school. He’s fairly effective. I notice the “touching” but that is because I’m watching him very closely. For example if he “needs” to touch something a few times with his feet. He will pretend to bend down and look at something—allowing him the extra time to touch his feet until it “feels right.” If he has to turn his head, “he will do so slowly” as if to really be looking at something. With the hyperactivity exacerbation, he is less likely to run full tilt crazy as he does at home—but it manifests itself in incessant talking or aggressiveness. (his peers do notice this). When it’s not a clear exacerbation and he is just baseline/borderline somewhat impulsive or hyper at home—he is able to completely change when a neighbor comes over.

Thank you ALL for your quick and helpful responses. Let's assume that this latest culture and titre is 'normal.' (should know tomorrow). The next step would be take his history to another doctor versed in PANDAS. Do I search out a pediatric neurologist, or immunologist, or psychiatrist? There are no "PANDAS" dr. in my immediate area (Raleigh) that I know of. I could drive to Charlotte (3 hours). Or do some specialists provide consultation by phone? My current peds dr. orders tests-- but doesn't necessarily believe in PANDAS unless there is 'paper proof."

THANKS! I posted my reply without seeing yours :-) You answered some of my questions.

Thanks so much for your reply. Is it enough that his brother is the one testing positive for strep (though the brother has NOT had issues with OCD or ADHD type behavior--ever)? What if I can't document a true association with strep within my son himself? Meaning, I fear his cltx will come back negative and his titres normal as in December. When that happened I just let things go. Do I keep pursuing the idea even if they come back negative again? I’ve read that there can be other triggers. But that may be like a needle in a haystack. And then what if I’m wrong and this is just ADHD/OCD. Also is it normal for the ADHD type behaviors to be more prevalent? The hyperactivity/impulsivity certainly comes and goes-- but far more frequently then these compulsions. So much so that we just "learned to live" with the idea that maybe he was ADHD (despite being successful in school). It's the rapid onset of these compulsions (every two years in hindsight), that are now making us question things all over again.

Hi Everyone, Need some advice here. I've copied my son's history below. He is 10. Our Dr. is willing to do labs but not necessarily on board with PANDAS I'm writing because I'm not at all sure what to do next. It is difficult to research a topic without looking for and tweezing out symptoms that apply. Therefore I am struggling with my own mind. Does my son have PANDAS or am I trying to make him have PANDAS by fitting him into the criteria? His case is not as profound as the case studies-- but worriesome nevertheless. Overall, I have always considered my son: an "intense child." more sensitive yet passionately competitive "obsessed" with being on time and also with things like sports statistics. Over the years we have toyed with the dx of ADHD because we have noted some lagging in social skills with peers (developmentally immature). We've also noted periodic hyper bursts and impulsivity. Yet he remains very successful at school and continues in all accelerated classes. He's also a competitive swimmer, plays piano...Therefore we've never medicated with anything for ADHD other than fish oil, a good diet , and regular sleep. For his OCD, he is not on any meds as well. Here is his history as best I can remember. Age 0-2: • Routine oriented child. Needed and asked for naps. Happy unless tired or hungry. • Very verbal at an early age. • Did "fixate" on certain things when in the learning stages of speech. Stages I remember: pointed out all the letter "O's in signs at a restaurant. Counted all the ceiling fans in a particular house. We attributed these things to be him being observant and astute. He did frequently line up cars-- but did not mind if the "order" was changed. Age 3 -4 : • Very, very good a puzzles. • No problems in preschool. • Bright. Recognized word and number patters easily. Began reading short reader books at age 4; could count well and began addition and subtraction concepts. • Enjoyed talking-- especially with adults or older children. Peers thought he "talked too much." • Sensitive to loud noises for a while--has subsided • Could sometimes be very defiant and demanding at home but never at school. Age 5: • Reading chapter books and accelerated in math as well. No problems at school. • No problems with separation anxiety until a much later point during the school year when severe anxiety set in-- made me "promise promise promise promise to come back." Would not leave my side for quite some time. I don't remember how long. • Began needing to rub his nose with anything that he had touched. EVERYTHING. • Pediatrician thought these things were a phase. They do go away on their own. Age 6: . • Accelerated classes. • No problems in school at all until December. Teacher noted marked increase in hyperactivity and impulsivity. We noticed this at home too. Running, constantly, not listening, defiant much more so than usual. Night terrors very frequently as well. Pediatrician dx'd ADHD/hyperactive impulsive type. Prescribed Clonidine-- which we decided not to try. Major sxms subsided by January on their own. Age 7: Began needing an excessive amount of reassurance, "am I good? do you love me?" in the spring • Compulsions started March of his second grade year. • deep knee bends to "feel right." • touching things certain number of times. • repeating shutting car doors and light switches. • Pediatric psychiatrist dx'd OCD. • Trial of Zoloft was horrible-- leading to increased hyperactivity and severe irritability. D/C'd after 2 weeks. Sxms went away on their own and were gone by June/July Age- 8: • No remarkable issues that we can remember other than continued periodic "freak outs with hyper behavior" at home. Immature behavior noted at times. • Successful in school- no issues. No compulsions that we saw. Age 9. • December-- marked increased defiance, impulsivityhyperactivity, and very terrible anger at home and at school. • Coincidentally? his brother had just had strep. • This is when I first read about PANDAS. • My son's cltx was negative and his ASO titre was WNL.. • Intense problems improved by January on own. THIS WEEK: AGE 10 May-- compulsions are back. Need for symmetry, touching with elbows, knees and feet until it feels "just right." If he turns his head left-- he must turn it right.... Compulsion noted X 2 weeks. Today BROTHER dx'd with strep via rapid strep test Baby talk and is saying he loves me several times a day(which is not his norm). Cltx and ADO pending Strep history is poorly documented because we've treated him at home frequently over the years (husband is family dr.). He's had several strep infections that we can remember as early as age 3. He's also had perianal strep. But I never kept track of when these things occurred. At this point, I'm not sure what to do or what to pursue. His history is not as dramatic as your case studies but there are clearly some "overnight" type behaviors in his history that come and go most especially the remarkable compulsions. The ADHD typer behaviors seem more prevalent and wax and wane. Do I pursue PANDAS and if so what is the next logical step? Our pediatrician is willing to order labs but has doubts about PANDAS in general. Thank you again. Any advice would be so very much appreciated!