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Everything posted by smartyjones

  1. i know i should know this. . . but, what actually causes the rash? i'm speaking specifically of bartonella - but i guess really any TBI. is it a reaction from the immune system that it is attmepting to rid of infection? does it show a functioning immune system or an impaired one? how does it come about? is it an attempt to rid infection through the skin? how do we rid infection anyway -- through urine and poop? why does it come about sometimes after someone is being treated? should we assume that the body wasn't fighting but it is a sign it is now? thanks!
  2. Dcmom – may not be related – just a thought . . . when yourdd was in exacerbation, did you notice issues with auditory processing? My ds seems to have issues in and out ofexacerbation, of course, much worse in; slight and occasional out. I wonder if that could be at play with either how she'hears' the words or how she did 'hear' them when she was/should have been learning to spell them or learning some basics of spelling. DS8 is younger so not doing as intense work as your dd but is an excellent speller – but had serious anxiety over spelling tests last year and this year is choosing only 5 words from a list of 28 that he can verbally spell correctly. (could be an easy way to show off and getextra points but he resists – mostly writing issues but also he doesn't want teacher to know what he can really do) He likes to play around with silly spelling ofwords he knows and words that sound silly with just a slight adjustment. So, although he can spell correctly, spelling is a big issue for him. One example that comes to mind was last year when we were watching the Weather Channel about the hurricane. They said "dryer air should be coming in"; he said something like "what's dry arare". This wasn't playing around, he heard it that way.
  3. i respectfully disagree with your thought -- if you are dealing with pandas, you very much should use mental health services for working through the OCD and any other mental health symptoms -- anxiety, defiance, etc AND you should use medical treatments to address the medical issues that are driving the symptoms. so, you very much do want and need to discover what, if any, medical situation could be driving the symptoms you are seeing. it sounds to me you have more than enough evidence of medical issues and timing of mental health symptoms for full investigation. i know it is so difficult when you are just looking for the health of your child and you feel like a ping-pong ball in the medical circles. i second the info on pandasnetwork.org to help sort through things. good luck!! i believe there is another person on the forum from Australia -- perhaps ozimum is her name -- ??
  4. you already have 2 of the most informed moms giving you good ideas. last year, ds10 was on hometeaching after struggling in school - not really things that couldn't/shouldn't have been worked out but we were in disastrous situation with administration with ds8. . i had long wondered about ds10 and zinc -- way back to our pre-pandas days (remember those?) and ds was extremely picky eater. we tried zicam chewables and he had a much easier time focusing when the teacher came to work with him. she noticed it before i mentioned there was a reason. i am not sure if there are any issues with long-term zicam use -- other than it getting pricey. what we were using is a homeopathic substance - but i am not sure b/c we weren't really using it for it's intended use - so that would be a good thing to check out if you were going to try it. now, he is on a supplement that he takes with dinner. his general focus seems much better.
  5. i cannot say that i think this is your situation also, only that i see some similarities to what we experienced and will tell you our story. . . my ds, now8 then 4.5, had sudden onset behavioral changes. our ped at the time was useless. while trying to figure things out, we were also seeing a naturopath, who had ds on some supplements and homeopathy -- we had seen some improvements . a behavioral therapist is the one who suggested pandas and blood testing. titers came back high and throat culture was positive. ds also had a history of trouble with, i think augmentin -- he had a slight rash 2x and was quickly switched, so i'm not sure how serious it could have been or if not too much trouble. ped put him on azith for 5 days. we saw a return of symptoms that had improved with a vengenance - and i'm talking serious vengenance!. i was so happy when that 5 days ended! he improved off the abx, but was still very much symptomatic. we switched peds. new ped put him on 30 days of keflex. he had 100% remission in about 3 days. trouble was - it didn't last - he backslide about 30 days off abx. the new ped also did CT scan that found all 6 sinus caviites infected. we later went on to find lyme and viral infections. i can't remember b/c it has been a while -- i think there may be some suggestion that azith may cause a herx reaction in people with lyme. i don't really know why the keflex did the trick. for a while i thought it was just that different kids did better/worse on different abx. i'm not sure how the lyme plays in and if that was the reason for the bad reaction or if it is really just different kids/different abx. i don't know abxs so i'm not sure about biaxin but am sure there are some here that know much info about the different abx. if you don't get many answers here -- you could post asking for more info about biaxin -- what it is used to treatg and what type of reactions/side effects people have experienced. good luck!!
  6. has your reading been on the PANDAS board and you were hoping for answers from the OCD board? if not, you may want to check out the PANDAS board as there has been some discussion about copper over there. we are working to reduce copper levels for my ds. really, it's not so much that he has high copper levels but he has normal copper but low-normal zinc so his copper/zinc is out of balance. it is something i thought could be a problem for a while but knew it was something i did not want to attempt with out a dr. who worked in this. do you mean the dr would test and treat over the internet or you found them on the internet but they would see your child in person for an appt?
  7. we have done lots of things in juice. . . but it can be tricky b/c it may not hide the taste so good and you can get into having too much juice and then you are just drinking A LOT of a bad thing. older ds gets it that he just wants a little of something bad; younger ds can end up with a larger glass of yuck. we're lately on cherry juice which hides pretty well -- although i'm not talking about abx. younger ds is on a vitamin regime with 3, soon to be 4, medium capsules in am and pm,. we've gone to tryng pills -- younger ds can swallow without trouble; older ds(10) really just can't get it. we've done the mini m&m thing. 10 year old can't even swallow a mini m&m. he generally thinks to think too much and in this, just can't get it down.l as much as i hate bribery and threats b/c i know how bad it can turn -- whne younger ds balks, he responds really well to 2 for 1. if he is not cooperating with what we have asked - pills included -- we set a timer and he loses 2 minutes for every 1 of not cooperating of screen time. in theory, i'd rather not do this - but it gets the job done.
  8. i am curious about when you saw the resurgence and when you began some of the supplements. just wanted to metnion that although my kids don't experience tics, older son had horrible exacerbation due to change in probiotic and younger has seemed to ramp up in relation to vitamin D. younger son is quite deficient in D (tests at 20) - i plan to try again, just have begun some other things now and with school starting, didn't want to do it now. meaning that although i definitely think he needs D, but seems to have an adverse reaction to it. could be some type of herx - ?
  9. phila -- i KNOW you are working so hard so please don't take offense -- i just had a thought -- is your daughter involved in developing the plans of what she will do? have you worked with her about what she may find doable? i love anxietybc.com as a resource and haven't looked in a while -- we use the fear ladder from there with ERP-like plans. my ds seems to do better when he is an active participant in the plan. sometimes he is not able so we have to tell him that then the adults are forced to make the decisions without him, but we would like his input. seems like you have some positive direcitons. i hope it all works out!
  10. i'm pretty sure . . . http://www.pyroluriatesting.com/ i think they offer some labs with a dr consult, for extra fee but i think KPU is one they will do just on patient order
  11. yes - i did think about that, but we do have strong strep evidence for onset, so it served my purpose. . . but i do wonder that also. esp b/c i believe ds had an exacerbation due to stress which would appear that he always has these troublesome antibodies circulating. i just read the synopsis for Dr. T at the upcoming conference and i wasn't sure i was previously aware the alternate fever theory was in constrast to molecular mimicry. EAmom -- are you going to that conference? i'd love to hear about it!
  12. having learned the VERY hard way last year, this year, i wanted to not give too much info to school about PANDAS but rather focus on what we could do to help ds succeed in school. he's in a new charter school this year after home teaching since Oct due to poor handling of situation last year. we had IEP mtg today that went well -- good assessments scheduled. team seeming very interested in finding out what ds needs and how to help him best function. we did have a medical diagnosis letter and our pysch attended the meeting. we did have medical and psych letters last year, but i think i gave too much info and was too informed and they thought they knew nothing about this and it just spiraled from there. yesterday, i was thrilled to find an awesome quote from Swedo that sums it all up. I printed this excerpt which prints nicely on NIMH letterhead even with a selected section print. . . "Strep bacteria has evolved a kind of camouflage to evade detection by the immune system," Swedo explained. "It does this by displaying molecules on its cell wall that look nearly identical to molecules found in different tissues of the body, including the brain. Eventually, the immune system gets wise to this 'molecular mimicry,' recognizes strep as foreign, and produces antibodies against it; but because of the similarities, the antibodies sometimes react not only with the strep, but also with the mimicked molecules in the human host. Such cross-reactive 'anti-brain' antibodies can cause OCD, tics, and the other neuropsychiatric symptoms of PANDAS." this is from "Possible Causes of Sudden Onset OCD in Kids Broadened; NIH Immune-Based Treatment Study Underway " on the NIMH website. http://www.nimh.nih....broadened.shtml there is also a organizational flowchart for NIHM on the website that shows who Swedo is. http://www.nimh.nih....dget/cj2007.pdf -- page 2. EDIT -- OOPS - that chart appears to be from 2007 - ? - maybe don't use it I also gave an excerpt of the chart from the 'white paper' that delineates the 'other neuropscyh symptoms' that ds showed all of. i simply said this is what we experienced in the extreme when ds had suden onset and if we see an uptick in these, he's likely entering exacerbation and we're likely to have problems. that was it -- no rattling on about symptoms, stories, theories, treatments. i was so pleased with myself! thank you, Dr. Swedo!!!! the rest of the meeting was about what they see, what they want to assess, how he's doing, how to help him.
  13. i just read about B6 deficiency having vague symptoms - involving shakiness and trouble walking. let me know if you want the exact quote. i wonder if he could be having some problem with deficiency or something else - IDK , i.e. low blood sugar - that is exacerbated when the stress and anxiety of goiing to school hits. last year, i would walk ds into school. he would hold my hand - 5 feet before the buidling and 5 feet into the buidling i felt like i was getting a contact adrenaline rush from him. i can only imagine what was surging through his, at the time, about 45 lb body. that could be why you don't see it so prominently most of the time, but see it at that time -- ??
  14. nicklemama -- interesting b/c i think i recall our ds's having similar symptoms -- ? did you ds have 'asperger-like' issues? do you have the lab results? our dr works with theories of copper/zinc ratio -- i think they like to see it below 1. ds was 1.3. i think there have been some autism studies on this also. did dr T say what he was looking for or ruling out with ceruloplamin -- Wilson's - ?
  15. well -- i'd say a lot of it is how you look at it. . . first, did your ped who doesn't know what to make of it order it or was the ped helping with another dr that ordered it? my ds has what is considered in homeopathy a 'cuprum (copper) personality'. i have wondered about KPU. i beleive he is doing well concerning infections but not 100%. he had 2 exacerbations last year -- one due to extreme stress, one after allergic reaction to sunscreen. i was looking for more answers. our ped ran some tests - zinc, copper, ceruloplasmin, and others. we did with quest. came back with zinc low normal and copper being low - which was VERY bizarre for me. ped not at all concerned. i was b/c i had concerns with zinc/copper in the first place, why i asked for tests. i can't remember but there is some issue with some people with Wilson's Disease may test low in some copper tests. . there is free copper and copper bound to protein. ped shrugged shoulders and blew off --( this is a ped i consider a good part of our team - think he's the best ped we are going to find -- just has limitations as a ped.) a few months later, we added a new dr who wanted to invesstigate these issues but trusts labcorp more. we redid labs (yeah, that was fun - cost me some sanity and a nerf gun). i knew this dr uses different criteria -- considers general ranges to be for "body health" and has different ranges they consider for "optimum health" i.e. best mental health functioning.. so, under this criteria, ds shows low zinc, normal copper and inappropriate znic/copper ratio. i see as i look at the past labs -- not related to how our dr thinks or works -- labcorp and quest have very different reference levels for zinc, copper and ceruloplasmin. ds's blood tested very close in both tests (thanks for the trauma!). the differeent labs would have rated differently for normal reference range or deficiency. our dr doesn't use their levels but has their own. then, there is the whole issue of how accurate mineral blood testing is in the first place. my advice would be to discuss with the dr that ordered in the first place, what they were looking for and what they expect to see in "normal' reference ranges. please keep me informed what you find -- i'm very interested in other's zinc and copper issues. thanks.
  16. WOW -- 10,000!! what were her levels when you first had them checked? do you do other treatments/supplements or do you find the most benefit from vit D? did you see a benefit right away?
  17. from our experience, i definitely think so. at initial onset, my ds had high titers and an active infection. we went on to discover multiple other infections, bacterial and viral. we've done well with eradicating - or downgrading - them. still seem to have some issues with parasite but seem to be working well on that, too. last year, with infecitons looking good, ds had 2 harsh exacerbations. i believe one in the fall due to extreme stress at school horiible situation resulting in home teaching for rest of the year. in the spring, another one i believe due to an allergic reaction to sunscreen. -- i know sounds crazy, but he had a rash reaction that lasted about a week and all signs lined up timewise. each was probably about a 4-6 week exacerbation. it stinks but i think once it's begun, any challenge to the immune system can bring out symptoms. we recently added a new dr to our team b/c i believe this but also realize we can't live in a bubble. we're currently working on a zinc deficiency/copper imbalance to try to help balance things out.
  18. i looked back at your other post and believe you mention there was a connection with strep -- ? -- if you're speaking about the Dr. L at Yale i think you are, i find him a solid positive player in the PANDAS world, so not at all arguing. .. just curious if you are willing to share why this is TS not pandas with a strep connection. jsut to mention again, we have been greatly helped with behavior issues by the philosophies of Dr. Ross Greene in The Explosive Child, Lost at School and his website livesinthebalance.org. his organization is quite responsive by email and he has a radio call-in program. EDIT -- okay, i see now you say he lacks the OCD portion -- i just feel confused b/c i see you mention behavioral issues -- were these new with onset of tics? i do confess, i am not really that familiar with TS and my son has not experienced tics. he did have severe behavioral issues that only a savvy behavioral therapist saw as OCD and headed us toward pandas. i certainly would consider Dr. L more than savvy -- i just feel confused. I'm not at all trying to say that i disagree, i'm just tyring to educate myself on why you have a classic TS diagnosis with a strep connection.
  19. SFom -- which son are you testing -- the one who was borderline or the one who developed a fungal infection? do you have anything to elaborate your thoughts about KPU being driven by infection or being life-long? i'm doing a balancing act between practioners -- our integrative MD believes infection is root of all (not totally but easier to say it that way). a year ago when KPU hit the scene here, i discussed it with him. he did energy test ds for zinc and he appeared low, normal in copper. ds has typical copper personality. we did homeopathic cuprum and also zinc with not much results. ds looks pretty good as far as infections. recently, i added another practioner who works more biochemically. ds blood tests low normal for zinc, normal for copper -- but inappropriate zinc/copper balance. his urine KPU is 5.74, which was surprising for everyone. so, i do wonder if this imbalance is an effect of infection or a life-long biochemistry. i guess the only way to know is treat, then back off and see results -- ?? -- of course, not sure i can screw with good results - but also don't want to do excess treatments -- even of vitamins. to the original question -- both my kids use homeopathy -- ds8 more severe symptoms but now on less homeopathy b/c doing well. they were also both taking 15 mg zinc for a short time before KPU testing. we stopped the zinc and the homeopathy - but only for a few days - whatever the lab recommended, that i think was only 2-3 days. as i mentioned, ds8 was 5.74; ds 10 was a little higher but normal. IDK -- could it have been due to homeopathyand they would have had higher levels if off longer ?? both seem to have positive results from zinc supplemenation. what is it that you are using to ART test for KPU -- zinc and b6?
  20. do you have the articles that were published in the OT professional magazine?
  21. [not sure if this would be your issue and i don't even really remember so well to discuss, but, when my son first had symptoms, he didn't seem to remember things i knew he knew -- like the order of the days of the week. he was 4.5, so it was things like that that he knew, but wasn't like an older child forgetting the days of the week. ds now has cognitive testing showing gaps in working memory -- whcih is a bit bizarre b/c he can do math in his head, which is usually an area kids with working memory issues have trouble. i was speaking with a PT recently about him and she said, "what happened to his working memory?". something in our conversation made her think something may have 'happened' vs. just being his make-up. perhaps your son is experiencing soemthing with his memory and is aware of it -- ? do you have any relationship with PTs or OTs at school that may be able to help?
  22. yikes - no lovers of CST here, i guess. we did do it early in ds's treatment. i found the practicioner b/c he was also a provider of a type of homeopathy i was searching for - pleosanum. at the initial visit, ds was about 5. he was sitting in my lap for the treatment. it was very bizarre, that at one time, it felt as if someone placed a large vat of boiling water in my lap -- he emitted outrageous levels of heat. we continued for a while -- not huge gains, more like subtle things i could be noticing. we stopped b/c we began to investigate lyme and that practicioner referred us to our current integrative MD and i had to make financial choices. i do think i'd like to do it again sometime in the future. when we switched treatment, we discovered multiple bacterial and viral infections for ds. we continued on strep treatment for likely 18 months before we could scale back without symptoms -- so that would liekly be hard to overcome with CST. my general opinion is it is likely a good addition to treatment but will not be a big 'cure' in and of itself. the practioner we saw is in Silver Spring and i very much like and respect him. i do think it likely depends very much on the practioner. i do have an interest in neurofeedback but have not done it -- $. i know of someone in Frederick who could be promising. we had a terrible experience with him concerning a consult for cognitive testing. somehow, i still think he may be okay for neurofeedback. he said he sees good results with it for anxiety. i also met a PT who was extremely bright who does CST in Columbia area. again, only so much $ for treatments - but she seemed extremely savvy and gifted. i do know she has one patient with autism and pandas. please keep me posted if you follow either of these!
  23. ds10 and i just energy tested for mycoplasma. ds began a cough in july-ish after a few days in a hotel. i thought possibly allergy or mold or something. lasted a while. kicked the cough with a homeopathic rememdy. integrative MD sees mycolplasma in him with a form of energy testing.. ds7 just getting over similar cough. i had sore throat and full head. i just also energy tested for it also. j just read in notes from OCD conference on pandas network, swedo said mycoplasma is descendant of strep -- ???? i don't understand. does this mean mutated form? i guess i thought they were 2 separate bacterias. is this why many pans are having trouble with mycoplasma also?
  24. i am glad to hear you seem to be on track fo rmedical help. . . i found much help for the behavioral side from Ross Greene's The Explosive Child. He also has a website called Lives in the Balance. the book basically jumped on the shelf at me one day in the library after a particularly trying day that ds had been opening the car door as i was driving. we have definitely seen the most success from medical treatments, however, this was also very helpful. I'd say not so much for qucik changing ds's behavior as for giving me techniques and ideas of how for me to act and react with and to him. it allowed me to be invovled with him without being dragged into the tantrum. it's a long process, but ds now has some pretty good problem solving and negotiating techniques -- still very much needs to be guided in it but he's on the right page. Good luck.
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