smartyjones

most seem to think could be yeast and have given suggestions - not to argue with that - just to tell our experience - when we first discovered pandas and active strep culture - the ped put him on 5 days of azith. he was horrible - all pandas behaviors, some of which had gone, returned with a vengenance - extremely clingy, agitated, anxious, obnoxious. a few days after off the abx, he was much better. the next month, he went on 30 days of keflex - returned 100% to prepandas in about 3 days. i definitely think abx can cause different, difficult reactions in certain people.

Wendy - please do keep us informed about the strain concept. i too believe this. my older son had strep with the only symptom being a face rash like teenage whitehead acne that dissipated but didn't go away for 2 days when 4 years old. my younger, pandas son, got the same strep, then 22 months, with the only symptom being vomiting. we would have never strep tested him if his brother hadn't been positive the day before. i do think that was the initial strep incident and pandas behaviors came out full-force 2.5 years later with another strep or that he never really cleared that first one. i do believe it's got to be something with that strain of strep. we are using a homeopathic protocol from a german company called pleo sanum that has much of it's basis in that exact concept - that viruses, bugs, bacteria are/become part of your make-up and the goal is not so much to fully eradicate it but rather move it around and/or enhance your other body make-up to exist symbiotically with it as part of your bacterial make-up. i have to admit - even though i don't have a scientific mind - it makes the most sense to me with the strep carrier concept!

melanie - hope you had a nice vacation. and i wasn't anxiously awaiting your reply - i just happened on here after you tonight. i found your post very interesting. my son had been doing quite well on a homeopathic protocol i think is similar in theory to long-term abx. about a month ago, we started taper/change and i think around the same time he was hit with a flu. it was quite mild and i gave him oscillococcium for a few days. he had an exacerbation but not too bad. we put him back up to the previous dose. we had some success with ibuprofen and then a homeopathic remedy that should have similar properties to ibuprofen. he was doing okay but still not back to where he was before (slowly seeming to improve, ~93% pre-pandas). however, he was still very immersed in potty talk - yes, he's only 5 but way over the realm of 'normal potty talk'. b/c of your post, i again gave him oscilloccium for just the couple of days the beginning of this week. BIZARRE! he's stopped the potty talk. it could just be coincidental or a 'normal' progression of symptoms, or that we're busy with Christmas -- but previously, no normal busy activities have made a difference. it does match with me giving him that. i'll keep you posted. for now, i'm enjoying the potty-free conversation! thanks!

don't envy you at all dcmom - such a hard decision. i would err on the side of overprotection and not go - but that is me, not my advice to you - only you and your husband can make the call. not related to pandas but - when my older son was 5 1/2 weeks old he had a fever and was hospitalized. they did a spinal tap and he had 3 days of IV rocefin. the tap came back normal and it was thought he just had a cold. due to his age, that's the protocol b/c they fear he wouldn't be able to fight an infection if it had been. unfortunately, a few days before, he'd seen my nephew who was 3 at the time and had a cold. did i blame my sister? no. did i wish we'd not seen them? yes! there was no way to go back and at the time, i had a good attitude about it but now (almost 8 years later), it still brings tears to my eyes to remember trying to wake him in the middle of the night b/c he didn't wake up to eat like normal, going to the ER, authorizing a spinal tap, IV abx in his small little arm. fast forward to 3 years later thanksgiving, my son had a cold and my BIL just had a baby - strangely enough, 5 weeks old. i refused to go to their house b/c it was just too eerie of a coincidence for me. that side of the family did not understand why i would be worried about it b/c they weren't and another cousin also had a cold and was going. so they were all mad at me for some time b/c we didn't attend that dinner. my husband would have gone but deferred to my thoughts and made that his decision too. i think at the least, you're fortunate that it sounds like your SIL is trying to work with you. could you go and your daughters be fine? yes. could they get strep or relapse? yes. could they relapse around someone you don't know who has strep? yes. so many ifs. i would say be confident in what you feel is right. just really try to make sure you and your husband are on the same page with the decision so you can have some togetherness if the rest of the family is upset. good luck!

New article : "PANDAS ... in Autism? A Case History", By Cosford, 2009 i don't know how to link the thread but this is the title - try searching that and it should bring it up, i think

there was an article posted by i think pandasdenmark that suggested that strep in the gut can bind with an enzyme instrumental in digesting gluten and dairy - thus leaving those foods open to not being digested properly. i thought this was very interesting b/c although my son did not exhibit digestive troubles, he tested sensitive to over 15 foods. i think it's that pesky strep that is at the root of everything!

michael - interesting b/c our pediatrician - who is open-minded but has only seen a few cases of pandas but is open to consulting with experts - put it in those terms for me - that he kind of has an 'allergic reaction' to strep. someone had asked about naet a few weeks ago and i have a friend who herself and her kids have lyme and she's used it along with other treatments. i was waiting for her to give me an answer and i ran into her - she said one was expensive treatment and used a machine, she wouldn't recommend that - not enough benefit for the expensive. years ago she used a chiropractor who was fabulous and she believes cured her of reactions to her dog but doesn't do that as his main form of treatment. i'll ask her again for a more definitive recommendation. kathy

i usually am on the pandas forum but thought this was interesting. my son does not have any pronounced tics. last year, i said he had no tics but now think there could have been some transient mild tics. last fall, just before pandas symptoms went wild, lice was going around his school. he began scratching his head often. his barber had warned me to watch him carefully b/c he has fine, blond hair which is more susceptible to lice whereas my older son has curly red hair and less likely to get lice. he never did get lice but scratched his head often, around the same time pandas was rearing. i now believe it's somehow related to pandas. while we were trying to figure everything out, we went to a naturopath who ran a food test and he was highly reactive to many foods including all dairy and most grains. we were investigating if yeast was a problem. we started on some supplements and a 5 day course of zithromax which was horrible for behaviors. somewhere around this time, the head itching went away. a few weeks later we took him off the foods and with a 30 day course of keflex and nystatin, all behaviors resolved. he did have high titers and a positive culture, plus all sinus cavities infected per a CT scan. he did have a relapse after he got off the abx. so - the head itching resolved before we took him off the foods and before he was on keflex and nystatin that was helpful with behaviors. maybe it was the zithromax? anyway, i don't think it was a tic, it was more like an itch. i do think it's somehow all related to the active strep infection.

hey melanie - how long was your daughter on the tamiflu? did you see the good results even after she got off it? thanks

i don't know how this would relate to your husband being home or not . . . but i seem to have found that during an exacerbation, my son is better behaved/controlled when he is engaged in activity. during his worst, he didn't display the really obnoxious behaviors at school. i noticed that at home also he was much better when fully engaged in an activity. that's what i believed to be the difference, not that he knew it wasn't acceptable at school but could get away with it at home but rather that he was engaged in an activity vs not being fully engaged. it does seem to follow for me that maybe it is somehow related to the brain activity and synapses and what they can/cannot control at particular times. could it be that simply your husband's presence provides more structure, direction, personal involvement? or is he also providing those things actively? so it could be an element of the general environment rather than what is acceptable with whom or where. as frustrating as the behavior can be, i really do think for the most part, kids want to get along and live harmoniously. before we knew what was up with my son, he was acting horribly in coffee shops when we met friends or family. a couple of times, i talked with him and said we couldn't go if he was using bad manners and asked if he would use nice manners. i remember him saying, "i don't know." now i really believe he really didn't know and wasn't so much chosing to use bad manners.

just curious - has anyone who is seeing a pandas neurologist asked if/about a migraine-pandas connection? not for ivig, but pandas in general? it seems to come up quite a bit. possibly just both neurological issues or more than that?

hey Michael - i know you've been through just about all treatments - were you saying you were thinking about trying keflex? just our experience - when we first discovered it was pandas with high titers and positive strep culture suggested by behavioral therapist b/c of difficult behaviors and extreme separation anxiety/school phobia, his ped put him on azith. this was horrible for him - all pandas behaviors intensified. we switched peds to much more in-tune ped. he thought he may have a sinus infection(confirmed all cavities infected) and put him on 30 days keflex. at the time, we thought he had a pen allergy, that's why they went to keflex. within 3 days, he was back to pre-pandas self. i do find it amazing how different kids react with different abx. i'm not sure keflex is used that prominently on this board but it was the one for us. good luck.

yes, vickie - i agree! when we were first trying to figure out what was going on with pands son - at the time, 4 years, 4 mohths - i found much info in the autism community!

just a thought - could it be a manifestation of social anxiety? of course, ocd is an anxiety disorder but would not trying to peg it into ocd and discover the thoughts make it easier to see and/or help? is she finding reasons not to be friends from a reject them/before they reject me stance; fear she won't fit in or fear she will do/say something wrong? my son's 'official' psych diagnosis is 'anxiety - NOS', not OCD. this came after pandas diagnosis. still now, i'm not sure the extent of the web of thoughts associated with things he does/doesn't do. it is probably either just right OCD or a looser just right anxiety. i have a friend whose daughter, age 6, has social anxiety and althought the particulars in the situations are different, there are so many parallels. have you ever checked out anxietybc.com. they have some good info in the parenting section. meg's mom could certainly weigh in on this thought . . . our psych is also not sure the extent of thoughts and for now, believes that if we can help his behavior to be more advantagous through modifying behavior on an anxiety level, we don't so much need to delve into the thoughts producing it. if we're not able to make headway or if behaviors/compulsions takes up too much time from life, then we need to investigate whatever unrelenting thoughts may be driving the behavior. so i'd wonder what happens when you set up situations that may be slightly out of her comfort zone with friends and just see if she can do it successfully w/o delving into thoughts driving it.

first and foremost - do not panic - easier said than done, right?! it sounds like you have drs checking things out and you'll just have to get the mri and go from there. you just don't know right now and you'll do what you have to according to the mri.so you're doing what you need to - don't freak out about the frontal lobe until necessary. secondly - if he's strep positive, that could certainly explain a lot. when my son first presented, his behavior was so whacked. he is now on a homeopathic remedy that appears to be helping with his exacerbation from the flu in the past few weeks. in the explaination of the remedy, it states, "disturbs the nervous system profoundly. it is as if some diabolical force took possession of the brain and prevented its function." third - i have a 'good' story about a frontal lobe tumor - and aside from pandas, the craziest health story i know! about this time last year, a friend at work's mother was diagnosed with a frontal lobe tumor - left side, i believe. she had an operation and they removed the tumor which had been very slow growing - they estimate she'd been born with it - it was about the size of a lemon. a few years ago, she'd been diagnosed as bipolar. after the surgery, they decided they thought those issues were really related to the tumor and weaned her off the bipolar meds. further - she was wild as a teenager, generally out of control and pregnant at 16. the area where the tumor was is where inhibitions are, specifically sexual control and inhibitions. the dr's now estimate (of course, it's hard b/c she's in her 50s and so many factors influence so much) that much of her troublesome issues through her life have been related to that tumor - it was just slow growing and didn't present in a way to be diagnosed. currently, she is doing wonderfully. no meds, no trouble from the surgery, etc and more even-keeled than ever.

since potty issues seem to be a part in many pandas cases, how are you kids doing in school with regards to the bathroom? my son has refusal issues and had extreme potty phobia since we tried training at age 3. this summer, at age 5, we were able to overcome it with 73 days of desensitization as you would for a phobia. there didn't seem to be a web of thoughts related to it, just a block. he does, however, still refuse to go at school. he's been a half-day student so it's been okay. we're trying to move him into full-day but this could be a problem. we're working on a similar desensitization with the school bathroom. my concern isn't that he'll have accidents - he's got a bladder made of steel - it's that at 1 or 2:00, he'll be difficult, antsy, and bother others like a 3 year old who is potty training. thanks for any advice or stories.

susan - so glad to hear it went well. and all that makes me uncomfortable as well! are you planning to go back to dr t or is he going to consult with your ped? i had e-mailed him to ask about his consultation policies with other drs but haven't heard back - i'll have to send it again. happy to hear the positiveness in your post!

so you believe that the abx quell the brain inflammation? are there only certain abx that have anti-inflammatory properties or all? is it that the abx reduce the inflammation, or that they calm other factors that are causing the inflammation? would this be the same effect from ibuprofen? is there anything else that would have this same effect? are you saying that you'd increase abx due to behavior regardless of evidence of bacterial infection? i think i'm having trouble understanding what the abx would do if not going after a bacterial problem. or is it that we can't be sure there is not a bacterial problem? does no one really know and you're stating what you've observed as cause and effect with your treatments? t-mom, can you remind me what your daughter is on now? thanks!

not to give to a dr but to help me be organized. . . a while ago on this forum someone mentioned paperwork going in the binder - ah yes - a binder! previously, i had folders that i'd try to shuffle through for my own info or at a dr's office. i now have labs, notes, studies, info from this forum, etc in a binder with sections so i can easily access what i need to. and i think it's important to have a copy of results from every lab that is run. for our last mtg with a new psych, i had an outline of the things i wanted to discuss written out. i gave her a copy, she read it over and then discussed from her perspective - kind of in the order she thought was important. i thought it was helpful - usually i have a paper with my notes, but inevitably i forget something.

peglem - good news! can you try to get something in writing? we recently have a small issue that i think we'll be able to work through b/c the psych didn't send in the proper paper after my insur agreeing to pay him as in-network. i am kicking myself that i don't have anything in writing.

it seems to me that if she is seeing such dramatic results with the abx, that is proof that it is pandas-related and not solely OCD.

totally not the question you're asking but. . . have you done ibuprofen? different situation b/c my son was doing well and then seemed to spiral into exacerbation with the flu, but ibuprofen did seem to help. don't know if that may help getting over the hump?

disregarding the medicaid issue - i wonder how many kids in general with behavioral issues have PANDAS! my son's presentation has been totally difficult behaviors - basically ODD and school phobia. not knowing him, you'd think he was simply a defiant little brat if you saw him in an episode. only now, 1 year later, do i question if some things could have been ever-so-slight tics. our ped office had a 'behavior specialist' who suggested meds at the first consultation w/o even seeing him. she suggested the next visit for a full check up to approve him for psych meds - which certainly would NOT have include titers or a strep culture. had i not thought that was a ridiculous first step for a 4 year old, we would have been on the psych medication wild ride. only by the grace of an in-tune behavior therapist did we discovered pandas. whenever i think about it, it's insane that we don't first check out all medical possibilities before putting kids on meds.

thanks for posting - i didn't see the show but saw the link. it was great that it seemed more relaxed with time and Beth had a chance to speak in a more relaxed manner to get her point across. I cried through the entire original Today clip and again when watching Sammy speak now. i think what gets me the most is when he says he doesn't really remember b/c it was so long ago. i may be wrong but i think he was 1 year w/o diagnosis and then another year trying to get well. and now, even with the book, it's not really something that he thinks is a huge part of his memories of his life as traumatic or odd. who was it - meg's mom? - who recently said she doesn't think her daughter remembers the bad times. of course, we do and that's hard but good to think for the kids, it may be less traumatic in the end.