smartyjones

yes, i believe it's possible to see a quick reaction. my son started presenting symptoms in oct/nov 2008. we started investigating pandas and strep in jan/feb 2009. we had a horrible ped who threw him on a 5-day course of azith just to CYA b/c he'd been in there many times the months before and then had high titers and a positive culture. this was terrible - all pandas behaviors came back with a vengenance. we switched peds, new one put him on 30-day keflex and sinus CT showed all sinus cavities infected. within 3 days, he was back to his pre-pandas self. i kept asking my husband and mom, 'do you think he's even better than before?' he did relapse a few weeks off abx - maybe due to just being off or had a virus - ? - so hard to tell. how long are you on the abx? what's your plan after? good luck.

i can't believe this but we were in the ped office last week for a strep test and i forgot to ask him if he would be able to evalutate this. forgot - how ridiculous! this dr imitated st. vitus dance for me last year when we were first getting into everything. i was focused on discussing strep and how willing he'd be to consult with others if need be. i've only seen the video on you-tube of very pronounced piano playing. i've tried to do the arms out with my son - we make it like a game and he likes it - arms to the sky, arms out in front, arms down - he holds his fingers fairly straight but does slightly move them up and down - i am unsure what is to be expected of a 5-year-old. would any healthy 5-year-old be able to hold their fingers straight or is it normal to have some wavering? does it so much matter if they have chorea or to what extent or is it more of a diagnostic criteria?

yes - the $64 million question - is it part of recovery or beginning of exacerbation? so hard to tell. i'd also be interested in other's thoughts, too. i don't have my notebook so i'm going to state this from memory - which is quite blurred after son's exacerbation, then beginning to move to full-day school by staying for lunch, me starting new part time work, new stove and dishwasher delivered and huge leak in our basement that was filling 5 gal bucket in 15 minutes during storm all night the other night. my son is using a homeopathic protocol similar in theory to long-term antibiotics. we were beginning a taper to another remedy. just before that he had 2 days of strange behavior. dr thought it was related to recovery. that was only about 1.5 days. around that time, he began to do things that could be slight tics - finger flick - all occasional but not usual. about 2 weeks later, he got the flu - fever, tired, vomit. only 2 days. then pandas behaviors that had been slightly surfacing started coming into force. not to disrupt life but to be annoying. we went back to full treatment that we had tapered off. also used ibuprofen which seemed to help behaviors and then have a wearing off time that was just about right. he's doing better although not back to where he was before all this - which i'd say was ~93% prepandas. so - what's it all about? was it taper of treatment? was it flu related? was it a perfect storm of both? would it have happened no matter what? it's all so hard to know. i do think maybe if you see some improvements it could be healing related. if none at all, then maybe not sawtooth recovery but maybe exacerbation or you need another treatment. also not sure how to gauge how long is too long for jumping in to avoid a large exacerbation with some other intervention. for my son, he had dramatic increase in repeating words, humming, smutty talk etc and slight in freak-out fight or flight reactions - which previously had been his biggest trouble. so even though he was getting abnormally upset, it was tempered and he could get out of it in a few minutes whereas before it was just a whacked reaction and would go on and on. he was definitely exhibiting behaviors but it wasn't debilitating. of course, you dont' want to wait until it becomes debilitating. He seems so much more animated and expressive in general but then the anxiety seems to still be high and we still see the rages. The rages do seem to be shorter and maybe not quite as intense. But they are still there. it seems like you are seeing some improvement so i'd tend to think it's recovery. i'd be interested to hear what your dr thinks if you discussed it.

hi cheryls. when my son was first having trouble, we saw a naturopathic dr who did a blood food intolerance test on him (igg). he was highly reactive to over 15 foods - including all dairy and most grains. that test is not so respected in the traditional medical community. we've consulted 2 traditional allergists who do agree that his immune system is producing antibodies to those foods but think "so what". i disagree, i think common sense tells me that if i'm worried his immune system is inappropriately reacting, i shouldn't have it produce antibodies to food! so - he's been dairy-free, gluten-free, egg free since Feb. it is certainly different but no where near as hard as you first imagine. it had been suggested to me to cut out dairy and gluten but it i thought that was so extreme and couldn't imagine it until i saw that chart with so many lines off the chart - the naturopath who runs that test all the time was a little freaked out. i've posted about gluten free before - you can try to search under my name to find it or let me know if you want more info. after the initial researching/discovering - we keep him on this diet b/c i don't want to overload his immune system as he's healing, not b/c i see differences in behavior. he had one major exacerbation a few weeks after ending keflex, after gf,df eating for about 8 weeks. he is just getting over another exacerbation with the flu after about 10 months gluten-free, dairy-free. good luck kathy

hi manda. as you may know from my posts, i'm into homeopathy and alternative treatments. i have never done this testing that you're talking about but know some people who have. one friend is a pretty hard-nosed realist. she was having some health troubles and personally knew the nutritionist who suggested it from a work relationship - not from seeking her help. she said she thought it sounded like 'a crock of s***' but decided to try it anyway. she said she was really amazed when they did the testing that it seemed to come up with something real. i think they did some sort of strength testing with the supplements/food. i believe she did see improvements when she avoided whatever was suggested or took whatever was suggested. the other is a mom of kids with lyme. i don't know remember what results they were seeing but last i discussed it with her, she was continuing. i can ask her thoughts on it now if you want. Kathy

i was surprised to see when i got my son's medical records as we got further into this that i there was a note that i had called the ped office b/c i thought he was having a reaction to the chickenpox vaccine. neither my husband nor i recall what it was so it couldn't have been too bad. with his first pandas episode, he had a terrible mouth rash. i do think it's somehow related but don't know how. also - there was something on here recently about croup. he had croup at 6 months (in key west no less - luckily we found a great doc at a clinic on a sunday - key west is NO place to have a sick kid!). chicken pox vacc at 1 year. first diagnosed strep at 22 months. pandas at 4 years, 4 months. it's all very far apart timewise but i think has to have some relation. oh something very odd -- he's little, probably just now about 20percentile but has beefy thighs. i noticed last year with pandas, 2 dot marks on his thigh - like where you get your vacc. it seemed raised then although he hadn't had vaccs recently. he still has those two marks. they trouble me whenever i see them.

did he have any explanation for what it is and why it occurs?

i read that quote in a book this past summer. unfortunately, i don't have the reference on my notes for what book is was. i am not sure if that is more a symptom of general and/or situational anxiety or OCD. yes, i mean that things become very black and white. for my son, i think it would be a need for perfection and or just rightness. again, in our situation, we have not been able to uncover the underlying thoughts, we only seen the behaviors. maybe it's better said as decisions seeming monumental and difficult. that's OCD, correct? i think it's the same issue of need for correctness. if it's a choice of OJ or milk, if i pick OJ, what if that's not the right choice? i'm still not able to understand how you discover an underlying thought vs. just worried it's not the best/right choice. what is the difference between doubting and symmetry?

meg's mom - i will certainly always defer to your judgment b/c i think of you as the definitive expert in OCD and your posts are so level-headed and reasonable. what would you think of keeping the order as the examples of behavior and then a definition of the OCD thought? as i'm reading this i'm thinking about that i used to work for an environmental organization in their legislative office on Capital Hill (can you tell i'm a bit of a hippie - environmentalism, homeopathy?). we had to always be cautious when working with members or other organizations elsewhere to not use our 'inside the beltway vernacular'. who is the audience you're seeking to write this for? is it 'innocent' parents who are trying to discover what's up with their child and all they know is that there's some whacky behaviors going on. i tend to think they could identify with the behaviors first and then move to the definition of what it means in OCD terms. still now, we are not sure of the level of thought for my son -- we only see the behavior. lately, he's usually able to get out of the behavior fairly easily without much life disruption so our psych doesn't at this time believe we need to investigate the thoughts. i should add that i think that correlates with what i think is healing from a physical medical basis.

such a good, good point! when i tried to explain many things, it could easily sound like a normal, 4 year old boy being obnoxious and people couldn't understand unless that could see that severity and frequency!

yes - that's what i thought too. i wanted to add about the repeating words or mantras and i was looking through my notes etc b/c i thought there was a name for that - something like preserverance or something? i couldn't find the term i was looking for. that's when i saw that on webpediatrics.com, it's listed under OCD rather than under physical symptoms where tics is listed, where they include vocal tics. it may be that is just their way of separating mental issues from strictly physical for ease of understanding for someone who is just discovering everything.

repeating certain words or mantra use of obscenities(with or out of context). when asked why, children usually state that 'something' is making them say these words i thougth the last one was called something else and not necessarily OCD but dr k.'s website has it listed under OCD of pandas

i guess that really makes a difference if the intended audience is NIMH to people who are 'in the know' of terms and situations or if it is a piece to have on their website for the layperson who is searching for info. my assumption was you were making a recommendation for their website to educate the layperson. was your intent to educate NIMH? in the early days, i, obviously, didn't find the NIMH info so helpful, but did find Dr. K's website helpful. perhaps this is the difference in the 'dumbing down' for general parents, where i'm most comfortable . i'd like to see a bullet for anxiety, phobia and unfounded fears in and of itself. still - i'm not so sure my son has the 'complicated web' of OCD - he's able to separate from the anxiety and phobia if he's not directly in it. may remain to be seen in the future but currently psych seems to just deal with immediate anxiety reaction and he can get out of it without getting into investigating OCD thoughts. is that supported in your studies or only anxiety related to OCD? i know OCD is an anxiety disorder but just a mention of unexplained anxiety or phobia that doesn't seem to have a correlation to a thought? he presented with ODD - i didn't know what that meant but i guess if i saw it in a list related to pandas, i could figure i should google it based on those 3 words. i wouldn't have known the term 'Tactile/sensory defensiveness'. he had extreme reactions to loud and sudden sounds. dr. k says 'increased sensitivity to light, and/or sound, and/or touch, and/or smells.

there's only either yes or no and neither will suffice.

i see what you're saying but do find that unfortunate. is that the way any disease or disorder is defined or is it for research study purposes? i say it's unfortunate b/c we never actually had an OCD diagnosis and it could have been years in coming b/c he was only 4. only due to an astute behavior therapist who said to me, 'what you're describing sounds like OCD but he's awfully young - there is this rare, unheard of thing PANDAS' - we had positive titers and culture - got on abx and had a short full remission; 2nd almost full remission with 2nd abx. if not for that, we would have had a long, drawn-out better parenting, behavior, OCD, etc hamster circle ride that so many of have experienced. is there anything we can do about that? am i trying to conquer too many windmills at once? not at all trying to deface what you're attempting to do!

it's called hyoscyamus niger (henbane) sorry - don't want to derail original post too much - just wanted to get the behavior symptom change across. erica240- i'll pm you some references.

wow - buster - fabulous. i am always a bit nervous to comment on your posts b/c my pea brain is just not in the same league! for signs and symptoms i wonder if there is anything in the study literature to comment on what in my early days on this forum, someone termed "strepnoxious". it was like a lightening bolt flew through me b/c that struck such a cord. i guess it would be a part of "personality changes" but more definition would be good. b/c, for us, all of those personality changes could also be defined as a 4-year-old boy 'testing boundaries', 'in a phase' etc. even now, if i try to describe what he does, it often sounds like just normal, obnoxious young boy. i try to say it's that it's infused with this whacked energy that is just wrong. i just recently found a homeopathic remedy while looking for one that was similiar to motrin. as i read the description, it sounded like i was writing a list of his troublesome behaviors "it's as if some diabolical force took possession of the brain and prevented it's functions. it causes a perfect picture of mania of a quarrelsome and obscene character. unseemly and immodest in acts. is jealous. lascivious mania, uncovers body. low, muttering speech. clingy and dependent. fears being left alone. crude behavior. loves smutty talk. immodest acts, gestures, expressions. unintelligible chatter. great hilarity, foolish laughter - does foolish things. does things to shock - such as saying doesn't love you or sticking out tongue. rage with unusual strength. strikes out at those trying to help."

oh no sorry, sorry - i just saw that post come up again and it was that kids on abx can have + cultures. . . so now my question is - how much do you trust a culture? if you're having an exacerbation but the culture is neg, can you trust that it is something else that is causing it, such as virus, etc. and it may take time for calming down of system. my son had the flu 2 weeks ago, it was mild and he got over it fairly quickly. i was thinking behaviors we are now seeing are b/c of that kicking up things. my husband said he thought for sure he had strep b/c of his behavior. of course, he hasn't searched for the end of the internet like me and doesn't know much of the ins and outs of pandas - not that i do, but you know what i mean. he was neg on the rapid, we're waiting for the culture. he's had positive strep results in the past -- + rapid at 22months; neg culture at 3 years with intense potty training phobia, holding urine, vomited - ped thought his throat looked like strep; high titers and positive culture last fall at age 4. so, how much weight do you put in cultures and do you still think to throw everything at an exacerbation and hope something works? thanks!

when i was telling another mom at school about pandas, she told me she gets a horrible strep-induced ezcema. she'd had extreme trouble with it. her dermatologist now puts her on abx if her throat feels sore. so do think strep can cause skin issues.

there was a mention on another thread that kids on abx can/may test negative to strep but still be having an active infection. i couldn't find it so am not sure i am saying it right. i don't understand this. what do you then do? can you assume an active strep infection isn't the problem and something else has triggered either an immune reaction or opening of the BBB? does that mean strep could be hiding out somewhere and you should actively go after it? how do you treat? throw everything at it - higher abx, ibuprofen, steroids and hope something works? if you see results by ibuprofen - i think judging by improvement and then 'wearing off' at the appropriate time (so can you draw the conclusion you'd see that also with steroids?) - can you assume it's more of a brain inflammation problem and could have other triggers than the strep bacteria? my head is spinning - can anyone enlighten me? i'm not even sure my words are making sense!

Very happy to hear that things are going well. thanks for updating. the school expectations can be challenging. i think it's very hard for educators to step back from where they see the potential of the child and realize the bars need to be adjusted and are not really as low as it may seem for that child at that time. my son is a bit younger - 5 and kindergarten - in august, we had said it a number of times before they really got it that our expectation was really only showing up and good social interaction - or at the very least not bad interaction. when we finally got on the same page, they seemed relieved. since things have been going well, it's really a challenge for them to understand our goals of not to raising that bar too fast or hard. please post updates on the chiropractor and alternative treatments. i'd be very interested!

please be sure to post what you find out - i'd be very interested.

i definitely think it is strep related or at least bacterial. our first diagnonsed strep was March 2006 --my older7 year old(nonpandas - although shows very slight signs that would never be a problem except that has pandas brother and it just makes me think. . .) woke up one day with small whitehead-like acne bumps on both cheeks and chin. it faded during the day but didn't completely go away. next morning was same as first. i thought it was wierd and called dr - a friend said she'd known someone who had a bad face rash with strep. by the time we got to dr in early afternoon, very faded. they didn't think could be strep but had no other explainations so rapid tested anyway = positive. he had no other signs of any illness. i now wonder if it was a particular strain of strep and that's what got the ball rolling for pandas son. he now often has small skin-colored bumps around his mouth that seems to come and go - seems usually if we are more or less diligent with fish oil. i believe it's thought fish oil can help with keritosis pilaris. he's had a red, small bump rash for a couple of weeks that appeared with a cold that hasn't gone away. last night, i put an homeopathic antibiotic that we use for pandas son on it and it seems to have helped. pandas son has always seemed to have very fast heartbeat when he has a fever. with first exacerbation, pandas son had horrible mouth rash - drs wrote off as b/c he was sucking on shirts and was chapped. it wasn't chapped it was a rash - i believe in and of itself. slight variations of this rash seem to appear with exacerbations. he is in mild exacerbation now and has small rash on cheeks that you wouldn't even notice w/o looking hard. i hate that medical saying, 'true, true and unrelated'! i think it's all related!!!

i have not used this but found it interesting. . . on the main page of this forum, there are old posts from Dr. Jacquelyn McCandless, author of Children with Starving Brains. I was reading throught them one day and she recommends a homeopathic liquid called AquaFlora. I think the webpage is aquaflora.com - you can google search it. when my son first started with symptoms, we were investigating yeast as the culprit. once we discovered pandas and he was on abx, he was also on nyastatin b/c i said i was concerned about yeast. our ped told me that if he personally goes on abx, he also has a regime he uses of diflucan and nyastatin. i don't think it's something he widely prescribes with abx but is certainly agreeable if the patient brings it up. (i seem to somehow remember that i read somewhere that when abx were first widely prescribed, nyastatin was also recommended to go along with it - no matter who or what the reason). my son is on a homeopathic protocol and has had a mild relapse. i wasn't sure if it could be yeast related and asked about aquaflora. our dr suggested another remedy that is not as strong to start with. i don't actually know what role yeast plays in everything. it is obvious he is in some state of dysbiosis but i don't think i believe yeast is the cause of the problem. we're now going back to a stronger strep remedy with the fungal one in the background.

so very true! irritibility, hyperactivity, defiance, anxiety - exactly describes my son's presentation. we were so fortunate that a behavior therapist suggested pandas. no one else was anywhere near thinking that. i can't imagine where we'd be without that and of course, i had never heard of it. perhaps i should send her some flowers or something.