smartyjones

but. . . when you break a bone, they say you will never break it again in that spot. it heals stronger than it was when complete. there will always be a mark there and you can see it on an x-ray but it will be stronger for the break. it's all perspective. . . .

p.mom -- is he actually spitting something up? okay -- i know this sounds gross but your post made me think of it and it may help you -- so -- in college, one of my sister's friends, who was a known bs-er, discussed that she had this thing that small pieces of white would sometimes kind of propel from her throat. she'd been to the doctor and they termed it something like "ecdysis". so now, i looked that up and that word actually means molting like snakes and insects do. however, i kept searching and found info on tonsil stones that would actually be what she was talking about. does this son have tonsils? you may want to search tonsil stones and see if this is what you're talking about. even if he doesn't have tonsils and you think that sounds like it, i think it can also be caused by sinus trouble.

oh mom -- you're hilarious!! joan -- i know you have tried everything -- are you familiar with the repeating technique from The Explosive Child? i've used this to keep an explosion in check but also for ds when he's being unreasonable. not to the level that you're talking about but like this. . . ds is gf/cf so his dining out options are limited. one day after a dr's appt and far from home, he states he's not going to where we had planned on having lunch -- it's one of his favorite places. him, "i'm not going there!". me, "you're not going?". him, "i'm not going" me "really? hmm" him, "i'm not eating there." me, "really? not eating there". after a little of this, some silence, then him "i guess i'll have lunch there." i really think when it's thrown back at him, he couldn't come up with any reason not to go there. if i had discussed that we didn't have other options, he really likes this place blah, blah, it would have just entrenched him further in that he wasn't going. now, i will disclaim, that ds's ocd seems to be along the lines of "just right" where he doesn't really have reasons to back things up, it's just not right. that's probably why it works for him b/c he realizes he can't justify it. this may not be so successful if someone has an undisclosed reason with their OCD. check out http://www.livesinth...problem-solving. keep in mind that he is speaking about "generic" challenging behavior. i know what you are dealing with is different and the solution is medical. however, i've found some good coping techniques as we are working on the medical solution.

malke -- i totally understand your desire to get her off the abx -- we are following a different path than most on this forum with an integrative MD and homeopathy. of course, all kids are different and all situations are different. . . .just to tell you our story. . . ds presented with "sudden onset" at age 4.5, behavioral symptoms. luckily for us, a behavioral therapist suggested pandas -- no one else thought any of these symptoms were anything like what we understood OCD to be. his titers were high and had a positive on culture. our useless ped at the time, threw him on a prefunctory 5 days of azith that were terrible -- later discovered lyme, possible herx - ?. we got a new ped who prescribed 30 days keflex and nystatin. a sinus CT showed all 6 cavities infected. he had 100% remission in about 3 days. he was back to my child before onset. i thought he was cured. about 30 days after end of keflex, he relapsed. i was so very unprepared for that. he went back on another 30 days of keflex and nystatin -- he did see improvement but not the full that had been before. so -- based on my experience, i'd say keep your child on the abx that you have the prescription for. it sounds like you have a good handle on watching for signs of yeast. . . deal with that if/when it comes up but i'd say keep the abx going if you can. after a year or so, we consulted with our current integrative MD. he does a type of ART testing. he diagnosed ds with a number of infections -- including strep. this was after about 18 months, 2 30-day courses of keflex, 9 mths of pleo sanum strep rememdy. ds is just now testing neg for strep after another 9 mths homeopathic strep remedy. it could be that the other infections had some type of relationship that was keeping/allowing the strep or it could have been the strep took a long time to kick. i definitiely believe strep can be in the body even while cultures are neg and titers are falling.

i'm so sorry to hear that this is what your school is coming up with for a solution. do you have an IEP or 504? have you checked out http://pandasnetwork.org/ for the new sample school letter? i very much like it. it's a good concise explanation, then has the "orchestra analogy" and then you can add personal info. i seem to recall it was more worded for behavior than tics -- but that could be b/c that's my son's issues so i may have interpreted it that way -- still, you could easily modify it for your situation.

i'm sorry - i know this has been discussed in the past but i'm asking again.... can anyone share their experiences/opinions about OT for pandas related issues? this past fall, my ds was having sensory issues -- constant movement, swinging doors, and really anything that he could touch would slide into repetitive motions. i was looking into OT as a possiblity. we then changed something in his treatment and meds and this resolved. i really don't now see things that would be that different from a 'normal' 6 year old boy as far as hyper-type movements. so, i did not follow up with any OT eval or treatment. i do still wonder how it could/would have been helpful and if it's something i should have/should pursue. of course, there's also the issue of what is it that actually helps b/c if we had done OT at that time and changed med, we may have credited OT with what i now believe to be due to med change.

was it you, peglem, who has suggested a type of therapy that goes back to a point when skills "should have" been learned to pick them up if they were not learned due to illness or other issues? do you suggest using this when you discover skills are lacking or when you feel the other issues, i.e. health, are at a resolved point? thanks.

my mom sews a lot so she has many boxes of various materials. the pockets she made were various sizes -- sewn on three sides with one opening -- just stand alone pockets. the best one was made from a bumpy dishcloth. we are homeschooling and were using them at home so it may not be so helpful b/c i think you're talking about an older child in school so there may be peer issues there. another good one was a velour type material. there was also a sock that is bumpy and was a little tight on his hand/wrist. sometimes he'd just rub his hands in them, others he's slide around on the floor with them. it did really help him with focus. i first tried my relaxing eye pillow that has little beads in it. at first, he liked it, squishing it around but then it became a type of lasso -- so it was more trouble than it was worth. this may be something that could work in school as a kind of small incognito sensory thing that he could squish around but wouldn't be too noticeable.

not sure what the issues are. . . i reallly found the book "When Labels Don't Fit" helpful. I'm quite sure that's the title, i can find the author if you need. when i read it, I was looking for help more with ODD than ADD but it has some good explanations and some good specific techniques. at that time also, ds was doing a lot of sensory stuff -- a lot of twirling, throwing, spinning items. my mom sewed him some pockets of various materials to keep his hands and feet busy. he really liked them and it did help him if he was supposed to be paying attention to something, he could put his hands in them and it did seem to help to focus him. i also got a few squishy balls

okay -- it's well intentioned -- grandious ignorance etc, etc etc. . . .due to an attempt to enlighted, educate etc a family member (not even me, by dh) this family member has now suggested we check out the wikipedia entry on pandas b/c they found it 'informative' are you *#*#*#n kidding me????? what do you think i've been doing for the past 2 1/2 years? i now hold an honorary degree in pandasology -- know of all the key players and have spoken to half of them and you condescend to suggest i check out a wikipedia entry? i'm not sure if it's b/c that site repeatedly mentions the 'controversy' -- i actually don't even think so, i think it was really mentioned in the spirit of helpfulness -- which i am trying to focus on -- but seriously -- you gotta be kidding!!!

hey mustang -- did those drs talk only about gluten-free or also casein/dairy free? was the suggestion for life or for the crisis time and healing? were you just sharing what you heard or do you do GF? thanks!

lfran -- i'm sorry i can't remember your ds's strep situation, in addition to lyme. i'll just tell you our situation. my ds had pretty classic pandas -- 'sudden' onset, high titiers, positive throat culture, 100% remission with keflex. however, he relapsed and couldn't get back to 100%. he had pretty classic neurological pandas -- not really any symptoms that aren't typical pandas -- no 'typical' lyme such as joint pain, etc. he was completely non-reactive on a lab corp western blot. a friend was a little bug in my ear about lyme even though my attitude was "thank you very much, my kid has strep issues". so,after further looking into lyme, i still didn't think he had it but he wasn't getting to 100%. after a horrible school conference, further justifying that he was not healing, i asked our dr at tthe time if we should revisit lyme. he referred us to our current integrative MD. i wrote out a complete history for our first appt with new dr. he has some extensive paperwork also to get info. after looking over and discussing everything, he said, 'i'd say based on these symptoms, he very well could have lyme'. he does a type of ART testing and ds tested for trouble with lyme, strep and some other infections. i don't believe ds had neurological lyme -- i believe the symtpoms we saw were due to a strep interaction. however, was the lyme a 'stealth' infection that was affecting his body without us seeing overt symptoms, allowing the strep to be the straw on the camel's back? if we hadn't discovered pandas and tried to treat him behaviorally, would he have developed more typical lyme symptoms over time? where do you live and what LLMD are you considering? i think most of them know much about lyme but also look at the body in general and see what issues need to be treated. i think since you know he has lyme, you need someone who really knows lyme to consider what treatment path to follow.

dedee -- i know i am veering from what you originally asked. . . are you familiar with the book The Explosive Child? there is a technique of repeating back what the child says to help defuse an explosion. i have found it very helpful for my ds to keep a situation from getting out of hand when he is explosive and incapable of understanding reason. i have also found it helpful in trying to gain insight into where he is coming from. he did have a time that he was having severe classic contamination ocd and refusing to eat. at this time, nothing was working. so i do understand when you are just not able to get anywhere but wanted to mention it to you b/c it may be helpful in trying to figure out some way that you can get meds/etc into her. basically, you just repeat what she says and when it feels right, throw in a "why", "what would be better?". at first, it's best to keep your tone flat but as you do it more, you can be silly, incredulous, questioning. if you said, "i'd really like for you to take x b/c i think it will really help you feel better", she says "no way, i'm not taking that", you "you're not". then whatever she says, you repeat, she "it tastes terrible", you "it tastes terrible". she "i'm never taking it" ; you "never . really? never?" you -- "do you think there's anyway it wouldn't be so bad?" her, "absolutely not" you "absolutely not?" somehow through this see if she will lead you to some solutions. i know it seems like it would be totally annoying but when someone is unreasonable, they don't seem to notice how annoying it is. my ds is only 6 and he seems to feel reassured that i understand where he's coming from when i'm simply repeating what he's said. i'm not sure where you'll get. my ds has said some surprising things when we do this. however, it is most helpful when he's unreasonable and i just need him to stop being unreasonable, not that i need him to do something.

have you explored 5-HTP? i don't know that much about it but think people turn to it as a sub for ssri?

dcmom -- i know you are looking for real studies but i am going to offer only my opinion. we never did try psych meds for ds. first, he was under age 6 and nothing is approved. the pscyh we were seeing at the time does lectures etc for drug companies and does not recommend them for under 6. however, as he was approaching 6, she suggested it. she goes VERY low and slow with the dosing. she is a pandas-knowledgeable psych and believes IF AND WHEN the infections is being properly addressed, then to treat the OCD etc as you would in a psych manner. unfortunately, i think that's the big kicker unknown -- how to be sure that 'if and when' are properly exhausted. she believed it was b/c he was testing neg on throat cultures. i still can't understand how we know when the strep is really eradicated and wonder what role other infections that aren't even well discussed play. i chose not to do this for the very reason JAG suggests. i just felt it was adding something else into a mix that we didn't fully understand. our current integrative MD believes low serotonin may very well play into the behaviors. however, he believes the infections and unbalance in the body are to blame for the low serotonin so focuses on addressing those issues and usually sees the serotonin correct itself. both my kids have tested through a type of ART testing as low serotonin. so, if we had put ds6 on ssri, would we have seen positive results? possibly. i don't think we would have been properly addressing what's out of balance with his system. could it be a short term solution to get over a hump while addressing the 'real' issues just like any other accomodations? possibly. is there an easy way to know when to modify that as an accomodation? i think these decisions are so difficult and there is not hard and fast rules to guide us. hopefully, ocdmom will chime in b/c i think she's very well versed on studies and results in her child. i was so impressed with Dr. Leckman at the OCD conference. does he have opinions on this? good luck! i think you have such good instinct about your girls -- trust what you think.

just fyi -- may not be the same -- about 4 months into treatment for TBI including bartonella, i got a small bartonella rash on my upper leg. around that time, my inner elbow was very itchy when i went to bed. after a week or so, a rash came out in that same area, not due to scratching. dr said he believed due to TBI treatment. it lasted for a long time - maybe 4-6 weeks and at time was very itchy. then it just went away. a few days ago, it's come back -- now just a few small bumps but is itchy. i didn't want to put cortizone on it so used a homeopathic stingstop -- not really the most appropriate -- a calendula cream would probably be better if you wanted to use something natural. i think TBI can include many types of rashes.

interesting EA mom -- thank you. interesting concept that she makes about a differentiation of compulsions -- autistic type -- about maintaining predictibility and familarity and feeling safe and ocd type -- neutralizing fear and getting rid of thoughts. i have always struggled with that b/c with exception of short severe contamination ocd likely a herx-like reaction, ds does not seem to have a web of thoughts. the autistic type would describe him more accurately. has anyone heard of this distiction in compulsions or is it just this woman's thoughts?

i'm curious kayanne, by "people" do you mean parents or pandas doctors? or everyone involved? thanks.

for about a year after ds was diagnosed, i claimed he had no tics or movements. i saw rapid eye blinking one time for about 2 seconds at onset. after i learned more, i now think he didn't/doesn't have overt tics but does have some things that a neurologist or someone skilled would consider tics. he used to do a mouth noise thing. he's had on and off hand/arm mouth wiping. i don't believe it's a tic but more some type of ocd. i don't think it''s a residual ocd but rather an exacerbation thing. with something like that, how do you determine tic vs. ocd? does it matter to distinguish if we know that it's a infection-based neurological issue that we are working on?

i posted this on lyme board also b/c that's where it's discussed more but in case anyone here that doesn't visit that board has thoughts on reactions to treatment changes. . . for those who have seen multiple herx when you change treatment. . . do you see the same behaviors/issues each time or totally different things? do you see the same intensity, less or various? ds had a treatment change about 3 weeks ago. saw improvements first week. second week, some mild hand/arm to mouth wiping. i don't think it's a tic, i think it's an ocd issue. this week, some questions about expiration dates, some random not eating. seems mild but he had a horrible herx reaction with severe food issues and refusal during the summer that was too close to dangerous for comfort. perhaps i too neurotic but certainly do not want to see that again. today is eerily cooperative and pleasant. no mouth wiping. ate a favorite z-bar that yesterday he spit out b/c was bumpy. i remember a day or two of me using those same words before severe storm of ocd contamination. thanks.

for those who have seen multiple herx when you change treatment. . . do you see the same behaviors/issues each time or totally different things? do you see the same intensity, less or various? ds had a treatment change about 3 weeks ago. saw improvements first week. second week, some mild hand/arm to mouth wiping. i don't think it's a tic, i think it's an ocd issue. this week, some questions about expiration dates, some random not eating. seems mild but he had a horrible herx reaction with severe food issues and refusal during the summer that was too close to dangerous for comfort. perhaps i too neurotic but certainly do not want to see that again. today is eerily cooperative and pleasant. no mouth wiping. ate a favorite z-bar that yesterday he spit out b/c was bumpy. i remember a day or two of me using those same words before severe storm of ocd contamination.

i know anemia can be a symptom of lyme and babesia. has anyone had normal -- i mean like CBC, etc -- blood work done and come back with possible anemia results? thanks.

hilarious airial - yes, i'm the same way!! i remember after i had my first son, i read somewhere that a child entering a relationship was like putting a magnifying glass to it -- everything is seen more -- the good is seen/gets better -- so does the bad. i think a sick child is like putting it under a high-powered microscope!! of course, i think the best solution is spending quality time together but that's not always a possiblity with $ and finding someone to watch the kids, especially in a flair up. one thing that seems to help us is each of us spending separate time with only one child. we fall into me being with both boys, then needing a break and him with both. sometimes, it seems to be more energizing to do something fun with only one child -- kind of for everyone, kids and us.

tpotter -- pls keep me informed what the LLMD says! thanks. did the LLMD send you for the chest X-ray or another dr? if another, what did they say about it?

ocdmom's post just made me think of something. . . we never did this b/c it didn't come up after the suggestion but. . . our psych suggested that he go to school for a short time at the end of the day and increase the time backwards. she thought it may work b/c he'd be leaving with everyone else (which was our goal b/c he was staying only half day, then a little more than 1/2-- this wasn't so much an issue b/c was in a montessori mixed age class that preschoolers stay 1/2 day and kindergarteners stay full -- he just never quite made it to full -- teacher wasn't supportive towards end of year so he stayed in limbo) and he'd know it was only a short time with a definite release time. he, like your girls, enjoyed school once he got there but we could never really reason that b/c the anxiety would take over. a definite time limit would have been helpful. so -- maybe for you -- does she have classes or periods in middle school? so maybe the deal would be that day 1 she goes for last period, day 2 she goes for last + second to last , and so on. i'm not sure what to do about explaining to peers why she's doing that b/c in middle school that is quite different than kindergarten. it wasn't so much of an issue for ds b/c although he didn't like doing things differently, he always saw the accomodation of the lesser of two evils and gladly took it over peer pressure. maybe it could be some type of explanation that she's been sick and has to rest and can only do a little school -- if a child had mono, don't they usually go back to school in short increments? so could that work rather than more detailed?