smartyjones

emuls -- i wish you good thoughts for finding help for your daughter. you may wish to search johns hopkins and dr harvey singer on this forum so you are familiar with what others of us have experienced from johns hopkins in relation to pandas. not at all suggesting you should not persue that but just that you should be aware of what others have gotten there. good luck.

my son is 5 and doing quite well - although not 100%. so, the daily challenge can be deciphering what behaviors may be pandas-related and what may be just 5-year-old boy age appropriate but behavior inappropriate. today, he got in mild trouble at school with another boy - the got sent back from the library for being loud and rude. the other boy was very wound up b/c he had a playdate planned after school with another child - my son is totally not involved in these plans although friends with the two who are. i thought maybe he could be having jealous feelings b/c he wasn't involved but now don't really think that is the case - he seemed happy for them about what they were doing and not sad or upset at all. the teacher commented that he does seem drawn to whatever hyper or negative energy might be going on in the class and feeds on it -- i guess like a moth to flame. i believe this to be a pandas-related behavior. do other people's kids seem to experience this? thanks.

gat's mom - would you be willing to share what your doing with all naturals? thanks.

not at all trying to derail the thread or get into vaccine arguments - just trying to understand. . . this presupposes that the prevnar vaccine was accurate and effective at the time given, yes? so, it puts the onus on the body to have not reacted properly to the vaccine, correct?

really? no one?

nevergiveup -- please do keep us informed about this -- sounds very interesting! i thought the issue was more that the regulatory t cells do not do their job of stopping the immune response? so confusing and i admit i'm over my head in trying to understand.

faith - just curious b/c i like to keep up with your story -- is this a new abx that you've never tried before? on a different line, you did naet for quite some time with your son, right? but didn't feel it was so helpful?

does anyone have any experience with auricular therapy and/or auricular medicine? it's a type of ear acupuncture that i believe can give info about the body somehow similar to naet. thanks.

happy birthday to your son and so glad to hear things are going so well. and for you mom - congratulations for you on your past 13 years and the recent success you have found with pandas treatment. your accomplishments in the past 13 years have been no small feats! do you know who Marianne Williamson is? she's a speaker, philosopher, new-age type guru. i find her very wise. when i was reading your post, something in your words made me think of her. i thought of something she said about when we get involved in something for seemingly certain reasons and then in the end, we realize our purposes and goals were not really those reasons at all but something with much more value. i tried to find it in a book, but couldn't. it's not totally appropo but made me think of it. i think it was along the lines of that all you have been through and done in working to heal your son has added to your life in ways, although you never would have chosen, that enhance who you are as a person. i did find this quote for you though - "inspiration rearranges our energies. it sources within us a new power and direction. we no longer feel like we're trying to carry a football to the finish line, clutching it to our chest and surrounded by hostile forces. we feel instead as though angels are pushing us from behind and making straight our path as we go." i wish for you and your son continued angels making straight your path!

from another post from Dr. T "I think its very prudent to begin to look for these in patients in whom the "usual suspects" cannot be found, and especially in whom there are multiple affected family members to suggest an environmental exposure." there's been much talk lately about mycoplasm and then this quote is from a thread discussing fungi. what is the general thought of when we are searching for the cause of the problem -- if we find a very viable cause, a 'usual suspect', can we believe that is the troubling cause? do we need to search for further secondary causes that may also contribute currently or longer term down the road? do we find ourselves in a "the more we look, the more we find" situation? also from that thread, caryn(? i believe) suggested we all have potential destructive pathogens and elements of virus/bacteria in our bodies that can be troublesome or exist symbiotically. i believe this to be true. so when discussing a "strep carrier", perhaps most of us are carriers to some degree of many bacteria, etc. and we only need to worry about it when for some reason it is problematic and out of balance, not worry of the fact that it exists within us. or should we be concerned of it's existence? i realize i'm beginning to babble a bit. my concern is with my personal situation in that my son presented with whacked behaviors - not overt tics, not overt ocd, mostly defiant troublesome behavior, cognitive inflexibility, separation anxiety. he had high titers, positive throat culture, confirmed CT sinus infection. behaviors resolved 100% on abx. the trouble comes in that he relapsed when off the abx, improved when back on but not back to the 100% pre-pandas. obviously, we are doing much to support his system and encourage his health. among other things, he's on a homeopathic protocol similar in theory to abx. he had an exacerbation in the fall with a flu that unfortunately, coincided with a change in medicine. strep culture was negative. symptoms were not horrible, still very functional but often troublesome. we ramped back up his medicine. it lasted 8 weeks-ish. last 3 weeks have been very good - still not 100%, maybe 95-ish. where do i draw the line in believing we are on a healing path and he is improving and that we need to be still searching for potential problems within his system? i feel confident we had strong strep infection that got us on this path -- am i only being naive and that's too simple? how do we know? how does one know if they are waxing and waning vs. healing that takes time? how do we know if anything we did made a difference or it was just the 'normal' time of exacerbation and we just are laying in wait for the next? thanks for thoughts.

just trying to get it straight in my mind -- p.mom - were both your boys not pandas symptomatic for those 5 months and you put them on proph abx to keep the strep away rather than treat any existing symptoms? were the symptoms primarily behaviors or tics? momwithocd -- is your son rid of all pandas symptoms that you are now thinking of stepping down the abx? also, primary behaviors or tics? did you just get on abx after saving sammy came out? sorry - it's hard to keep everyone straight and i'm so very interested in how people are managing and what criteria eveyone uses to gauge success! thanks.

sorry - he takes all of those items for one week as a 'yeast busting' week or he takes each of them for a week separately so he is taking something almost all the time?

does your son follow an anti-yeast diet currently? did you find what you think was the cause of the yeast?

yes - i definitely agree. for my son, his yeast-type behaviors were part of his pandas presentation and before abx use. that's what i find interesting that he didn't so much have something to draw back to, yet had yeast behaviors. i guess it just goes to show how delicate a balance we live in.

tmom - do you believe the issue is inflammation in the tissues of the basal ganglia - in effect the swollen brain tissues?

so don't want to throw thoughts in you don't want, faith - but i feel you are open to all thoughts and then sort through them and do with what you will. . . when i see things you write, i do just think about our experience -- that we had such a horrible experience with azith, where most see good results. our ped at the time was willing to write it off as 'strep over, case closed' and send us on our merry way for years of behavioral treatments. we switched peds, luckily to one who listens, who believed he had a sinus infection, which was confirmed on CT as all six cavities infected and saw 100% improvement on keflex. i'm not trying to convince you of anything - i just really believe that some kids have different reactions to different abx.

i wouldn't say my son threw up on a regular or cyclical basis - however, he would throw up at the drop of a hat. he'd also occasionally run a fever. then he'd get over it in a day or so and move on. i always thought it was just how his body dealt with whatever he'd been exposed to. he did have confirmed strep at 22 months. i now believe - although there is no way to know - that he never really kicked that strep and had latent strep that reared it's head at times either by itself or in relation to some other infection and that's why he threw up and had fevers. i don't remember if he had that pattern before that strep. at 36 months, we were having difficulty potty training, he was holding urine. he threw up one morning, i took him in to be checked out. she thought his throat looked like strep. he was negative on the rapid and culture. i think it's got to be related. we discovered pandas last dec/jan, he was abx last feb and again in april/may. the last time he randomly threw up was once in july, was sick for a morning and better by the afternoon.

so wendy - how will you know when the gut flora is repaired? so you naturopath does not recommend for all general people to take a probiotic everyday for general health? just trying to understand. i was trying to figure out that product you referred the page to - how many servings is a bottle? thanks.

kari - i'm sorry i don't i have any good recommendations for you - and i think, of course, it's all related. we were first investigating yeast as the problem when my son first presented with symptoms. i was discussing it with the behavior therapist we sought help from. she said she didn't really know if she believed that to be such an issue (from more of a conventional standpoint) but said what i was describing sounded like OCD but he was so awfully young to be presenting with OCD. and then brought up that she had somehow heard something about pandas. she was the only one to bring up pandas. at the time, i thought she was just not such an alternative thinker and was more along the lines of anti-yeast, conventional thinking. come to find out -- she was our angel. so - i do believe yeast is somehow an issue that comes in to play - however, for my son, he was presenting with many symptoms that can traditionally be attributed to yeast, that i now believe were strep at the root. maybe strep throwing off the bacteria/yeast balance but really strep being the demon to deal with. i also remember an article that talked about how strep may bind with an enzyme in the gut that should be digesting gluten/dairy and causing other troubles - but again, strep being the demon. this of course, leaves us in the conundrum of how do we know when we've eradicated the strep or brought it down to a level that is not causing trouble? is it by behaviors? is it so difficult. i don't know - i guess i'm not helping - just wanted to say from my viewpoint with my son, i think i will be more vigilant for the strep as the root cause than other troubles.

meg's mom - thanks so much for the info!!! i'm near dc, so very interesting. we'll have to keep in touch closer to the date about who is coming and getting together!

kari - are you sure it's the anxiety or is it some physical manifestation? or both? last year, my son would suck and chew on his shirts and jackets - so much so that they'd be soaking. he had a bad mouth rash that the drs said was from licking his lips. i don't know what was causing it but it wasn't just licking lips. recently with an exacerbation, he again was chewing shirts although not as bad. he was also putting his whole fingers in his mouth. for him, i do think it can become an anxious habit but i think it is caused by something else. and it does seem to go away when he is doing better. have you tried that nail biting stuff? i was going to try that last year but never did. people also say hot pepper sauce but i think that'd cause more trouble than good!

hi lisa. i was trying to get your story - your son is 6? first grade? my son is kindergarten this year. he had extreme school phobia/separation anxiety last year. he was at school where was going 1/2 day, 5 days a week. he were fortunate in that we discovered pandas fairly early and he saw great results with a 30 days course of keflex. back in school, back to normal. unfortunately, he backslid once off that. we put him back on abx and he did improve but not to the point of making it back to school before summer break. i can't remember the numbers but he may have made it 1/2 the year total. he's doing quite well now but we do have many things in place to deal with the separation anxiety and phobia. he is slowly inching his way into a full-day day. last week was a bit harry b/c he'd been out 1.5 weeks due to snow and so it's "too different" to go to school and he forgets he actually likes it. i believe above all, his health has to be up to par. having said that, there are things that are either now part of him or will be part of him for the near future that we have to deal with on more of a psychological basis. it's hard to have to force him to do something like last week but i also know that it's the lesser of two evils of having him quietly reading in his room by himself for the entire school day b/c that's what he'd gladly take on one of those days. i found anxietybc.com helpful with ideas. tamar chansky freeing your child from anxiety was also helpful. let me know if you want to know some specifics of what we're doing. good luck!

i had to go to on-line for what to do when your brain gets stuck - but found the explosive child in my local library - so did another friend in hers. maybe that can help with only having to pay for those that you'll refer to often or you find are helpful.

susan - have you read the explosive child? i've found it very helpful for these situations. it's the only way i've found to disengage. you just repeat back what she's saying in a neutral tone. don't offer help, suggestions, thoughts - nothing - just repeat her words back. it keeps you out of it while not ignoring her. i'm not sure if i think it's so much a helpful technique for him as it is for me. my son gets further annoyed with any other type of help - at the time, he can't accept any suggestions, ideas, etc. i've been very surprised that this repeating back doesn't annoy him and he doesn't even seem to realize what i'm doing. once he's more calm, we can try to work on a solution together.

my son reacted horribly to zithromax. at the time, we believed he had a penicilin allergy, that's why they chose zith. fall '08, he'd been to the dr many times - then a behavioral therapist suggested pandas. he had high titers and + culture. the ped just threw him on a 5-day course of zith with the statement, "i think you'll find the strep and the behaviors are not related." it was terrible - he was clingy, tired, irritable. could it have been a worse-before-better issue? i don't know, maybe. however, he improved once off the zith. we switched peds and a few weeks later, he was on a 30-day course of kelfex. i saw a 100% return to pre-pandas in about 3 days. i know most see great results with zith. we did not and i do believe it was not a good med for him.