smartyjones

hey t mom - i tried to PM you but your box is full. if you didn't know, the author is going to be at a book festival in gaithersburg on May 18 (i think). the info is on her website if you are interested.

my mom is a fan of dr oz and i looked at the website today to see about the 'vegan before 6' plan. i saw he did a past show on parasites and specifically discusses babesia. he quotes an estimate by the CDC that 60 million 'of you' - i assume 'Americans', have parasitic infections and dr oz says he thinks that's likely conservative. i was pretty surprised to see this in the mainstream. if interested, you can google it and search his past episodes.

nickelmama -- does your ds have high copper on blood tests, or inappropriate zinc/copper ratios? we are at 50 mg zinc also, but upped too quickly. i don't know that i am too comfortable going higher than 50? what are your future plans for zinc? we do give B6, P5P and B12 - i hadn't heard about B6 being balanced B12. thanks.

Yea Trudy Posner, OTR! Awesome warrior for us. Thank you!

hmmm - remind me LLM -- your ds, pyloria but have you thought high copper issues? your dd -- you've thought high copper issues, right? do you supp her copper? my ds has low zinc, high copper -- high copper personality. pyloria test negative, but doc doesn't trust b/c of low zinc. we recently upped his zinc but i think too quickly and saw some symptoms -- generally thought of as high copper symptoms. i can't imagine it's b/c of low copper. reduced zinc and saw evening out. still in the process of evening. i'm not too worried b/c we have normally scheduled ART-like appt this wednesday. but wondering -- if increasing zinc would result in symptoms, would charcoal be of help? we've never used charcoal before. doc does not usually use charcoal, does suggest trying to move up zinc at slower rate. ds is generally back to normal but seems to have some fluctuations -- like tonight, not too happy about bath, dh helping him but comes to me with basket full of laundry seeming apologetic that he's handing it to me. i call older ds to bring me Wegman's yummy chocolate chip cookies to share in quiet basement. to dh -- pal, i'll spend all night in the quiet basement scrubbing dirty baseball pants eating chocolate chip cookies if you deal with that obnoxious child in the bathtub!

hey dedee. what is your daughter having done? my ds is to have 2 supernumerary teeth removed. they are already causing trouble as they have inhibitied a loose tooth from coming out -- are looking poised to cause trouble for roots of a permanent tooth, so i don't think there's a way to avoid this -- although i'm still trying to find one. i know we've got to go with general. do you know what they are to use on her for anethesia? i am trying to figure out what might be best. please let me know what you've done in preparation and how things go! good luck!!

pandasphilly -- YIKES! can you give me more detail about any suggestions they gave you? when did you discover the CBS mutation in relation to anethesia? does your son have any vit D receptor issues? do you have any retrospective thoughts about symptoms that you may now attribute to CBS? did you do 23 and me? can you speculate -- i believe you recently posted about infections you have found through ART, right? would you have any thoughts on if these troubles were related to infections vs. genetic mutations? how is your son doing these days? thanks!

i would definitely take him to see your doc.good to get the medical opinion and have it in his record for the future. be sure you have a feeling of your docs feelings about lyme in general to properly evaluate what they tell you. a number of years ago, i found a bloated tick attached to me. my doc put me on doxy and sent the tick to be tested - quest said neg - not sure i trust that. last year, ds8 - then 7 - came home from a camping trip with an attached tick - not bloated. we went to doc - no doxy b/c under 8. he did have a mark - not bullseye, he is pale and sensitive skin. we watched him closely - the area physically and him behaviorally. for PANS, we see an integrative MD and have been treated for lyme and take a propylactic homeopathic. we increased that. we saw nothing troublesome that we attributed to this tick. i don't believe the 24 hour rule - but i believe it is fairly widespreadly believed in the conventional medical community. so - i'd say, consult with your doc, watch your son closely, be aware of signs and symptoms but don't be freaked out and wildly worried. Good luck.

glad to hear he's doing better!! are you blocking me or is your in-box just full?

nicklemama and LLM -- any more updates? thanks!

other than titrating the dose or if a script can be covered by insurance -- should there be any difference between enhansa, brand name, and another curcumin product that i would buy anywhere else? thanks.

herpes? when ds first presented -- he had a mouth rash that would come and go -- not really blisters, redness. we were seeing our first incompetent ped, who we quickly left as things developed, however -- at the initial time, i trusted them -- they blew it off as chapped lips and said he must be licking them. as time has gone on -- HHV has been a troublesome virus for ds.

we have been very fortunate in the past 2 years to have some really good psych providers. previous to that, i was very disenchanted with the entire profession. i am still quite jaded and quick to not trust. we have not been in your situation, so i am not speaking from experience - only from thoughts . . . i would carefully weigh your past and current thoughts and experiences with this psych. as much as they are to help each individual patient, they are also obligated to protect the public good as they see fit. is the recommendation for the best benefit of your child, or a CYA for the professional? Good luck.

i had asked about who diagnosed/prescribed b/c i was wondering if you have discussed nosodes with your ART practioner? it sounds as if not. i'm not sure if that's b/c it's not something he/she practices or if not something he/she believes in. you may want to investigate it. often you may get something that is not that expensive - and then have ART test it for you. i have no connection to this company -- have not used these specific products- just googled cocksackie nosode to have something to refer you to to explain. http://www.mhpvitamins.com/id117.html i only mention b/c i believe ds kicked his most troublesome virus with a nosode. good luck!

is your ART doc the one who is giving you the script?

Okay -- how old am I? reallly, just old enough for the reruns. wouldn't that be great - Dr. Bombay to pop in with solutions?! once you determine you have specific SNP mutations, is it definite that you should avoid certain supplements -- or is it just as genetic tendencies, that you could be more predisposed to have trouble with it, but you may be okay -- like more of a possibility to turn on that gene, but not definite? do the SNPs cause trouble with processing of certain amino acids? there's not a way i will be able to do the test and know for sure of these mutations before, but i suspect. . . does a CBS mutation and/or Vitamin D receptor mutations indicate more trouble with anethesia or particular anethesia drugs? Dr Bombay? Bueller? Anyone? LLM -- i think it's you!

kimballot -- yes, i'm not too clear b/c i'm trying not to babble -- i mean not official 'PANDAS' diagnosis. thanks dcmom -- i was hoping you'd weigh in. this is a charter school with a bit of a different philosophy and generally very child oriented. there is a 'student support center' that helps with problems and behaviors. he has trouble with the cultural arts, "fun" classes. he was able to work through a problem with art a few months ago, with adult help. his classroom teacher has been very helpful and supportive of him. now the problem is with music. his anxiety generally presents in a 'freeze' or 'fight' manner. to those not in the know, the freeze can be maddening and seen as difficult behavior. a specific incident happened and i believe the music teacher sees it as solely difficult behavior. the meeting with the tech in the support center seemed to be less than helpful. that afternoon, i stopped in to ask for direction and was told to contact the tech's supervisor to meet. i did that via e-mail as first contact on monday, with classroom teacher on cc and VP who had been involved in art issue and aware of music issue on cc-also. wednesday, i phoned, left message on voice mail. initally, i wanted clarification of what happened (b/c i have only heard the anxious 11 year old's version) and to make them aware that he has been feeling anxious about music for some time -- this is likely the cullmination of that, not simply an incident of unprovoked poor behavior (not that there really is such a thing anyway). that had us back to thursday, music day. he was resistant to go, troubled. sent e-mail to classroom teacher as fyi that this is still a problem for him. the only outcome from tech meeting was that he could have a wiggle seat b/c they sit on floor and he says his back hurts -- no seat for him that day. the asst in his class did talk with him. class went okay, but he still feels there is trouble with teacher and feels he needs solutions. previously, we have had quick, great response from classroom teacher. in my e-mail to her, i asked what she is seeing at school and for direction if she feels we need to discuss more support for him. i'm a bit baffled why no response.

it can very much depend on the individual and their own independent focus. we saw a NP early on in our journey. i very much liked her and had confidence in her general abilities. however, i wasn't confident in her ability to handle this very specialized situation. just mentioning that as our personal experience with this particular practicioner. we currently see an integrative MD. as much as i like alternative modalities, i am also happy to be under the care of someone who also is an MD, with that background. so my person opinion would be that if you are trying to heal infections, i may be leary. if you are trying to shore up the body to be its healthiest possible situation, i have more confidence. a long time ago, i read an Andrew Weil book and he discussed that allopathic medicine has some very good solutions for particular problems, but is not so good for others. the same with alternative. he suggested not trying to solve certain situations with allopathic and not trying to solve others with alternative. i can't remember his exact list, but there may be some info on his website. now, that said, we use homeopathic medicine, not abx. but again, under the care of an integrative MD.

i have an issue -- not too big but trying to be proactive -- with my "nondiagnosed" pandas child. he does have diagnosed social anxiety disorder. he does not currently have a 504. i am not actually in a rush for him to have one. however, i need people to understand that he may need a little extra help in some situations. if they cannot, he will need a 504. i usually think giving 2 days for a response is fair. it has been all week (monday was my first contact) and 3 contacts. i let today go b/c i was out of town. i will contact on monday -- it will be day 6 and my 4th contact. to be fair, first contact was to one person and 3rd was to another -- but all 3 people involved have been cc-ed on all. i think this is unacceptable. i have had an extremely good relationship with many people at this school up until this point. please -- opinions as i go into this on monday. thanks!

oh LLM -- hilarious, as always! you know i will be waiting for that enhansa report. i'm thinking about adding that in the summer. my kids have been ART-like testing okay for yeast, but recently both have been sick and now have very small bumps on their faces -- i'm wondering. please be sure to keep me updated!

i have no experience or knowledge of the particular products you are talking about. . . however, i did just read something the other day that made me remember something we did early in our treatment with ds. we were with another provider - not our current - and were using pleosan products. this provider was very conservative (funny to use that word with an alternative provider) in his treatment approach b/c ds was young - i think 5. anyway, i think -- he began with one drop on his inner elbow (i think) and observed. it was a long time ago - but i think we may have done something like one drop then wait 2-3 days. then another. then, when no reaction, we moved to each day. and then eventually moved into oral. just thought i'd mention it -- sounds like banderol may be something that could help - but obviously not in the manner you've done it. may be something to discuss with your doc as a way to slowly work up to even 1 drop.

sorry - no real time to reply, but YES! ds was, i think, the ripe old age of almost 6 at the first time. doc said somewhere, somehow his immune system took a hit and then everything else piled in. good luck with treatment!

so LLM -- yesterday, i went back to search your posts b/c i wanted the recent Ross Greene lecture b/c ds11 had some trouble in school, (last month art and this month music! -- my literal child who struggles in the 'fun' classes) the VP told him to write out what he saw as problems in this situation. and the behavior tech who actually worked with him brushed that off as "excuses" for not being able to control himself. . . . anyway, i noticed you had 2,500 posts -- did balloons drop from your ceiling and anyone arrive at your house with a cake and a trip to Disneyworld? i am truly grateful for all your posts!! thank you!!

tu4 -- what is she taking now? i went to the TACA meeting this weekend where 2 of the docs said that if you give a med and see a worsening and then give charcoal and get improvement, it's likely a herx. did you recently start her on something new to have the charcoal produce that?

eamom -- is there some reason that you posted this now? or did you just read or reread it and want to comment on it?