Fixit

Something like clonidine (catapres) wont do anything towards "curing" the tics....it's basically suppressing them for a day or so while the med is working (kind of like a pain pill is removing the sensation of pain for a few hours, but not actually doing anything to treat the underlying cause of the pain). ((hugs)) and BEST WISHES!! Just thinking outloud...wondering...... i read on the pandas board...by EAMOM....that it was studied that SSRI's did something to let the brain or brain conections heal....and some have had perminant remission (you can tell i very technical)...(i ma.I wonder if, that might be true of other things like cataphese....it lets the brain settle down in some other way to heal. maybe it hasn't been studied yet. this is by EAMOM "Our PANDAS dd was placed on Lexapro (5mg/day along with antibiotics, augmentin intially, then amoxicillin) when we first learned of PANDAS. At the time she was in a severe PANDAS episode (March 08). Among other things, she had full-blown anorexia nervosa (required 6 days of hosp. for malnutrition). When we tried to wean her off of the lexapro 2mo. later (at that point she was on 10mg/day) she had major withdrawal (flu-like symptoms) and her anorexia returned in full-force. Hence, instead of weaning her off of ssri's we transitioned her to prozac (10mg/day). This was all before we "discovered" Azith/advil (actually this is HOW we ""discovered advil but it took a couple of weeks for us to be able to give the advil consistently). My take on the Lexapro: It definitely wasn't the "right" ssri for for dd. She had serotonin syndrome (akathesia, also other issues, didn't want to go to school) on this drug. I think it did help her mood a bit and also her eating. At higher doses (10mg, hoping that would help her OCD b/c it wasn't adequately controlled on 5mg) she had increased defiance/aggression which we thought were pandas symptoms, but turned out to be from the ssri. My take on the Prozac: I'm not sure it's doing anything at this point. But, we've been reluctant to "mess with what is working" and also wonder if it is helping a pre-existing social anxiety. We did try to wean her off Nov. 09. We went down to 5mg/day for 2 weeks and and then 0mg for another 10 days. What we noticed as we weaned her off she became very "barky" and irritible...rather difficult to live with. When we placed her back on she improved. We're not sure if the irritibility was that the prozac is actually helping the pandas (irritibility was one of our first pandas symptoms) or if it was an effect of prozac withdrawal (ie if we would have been okay if we weaned off much slower.) Dd also had a dental cleaning and a mild viral infectin (no school missed) during this time frame. So, I don't know if that influenced things. I also wonder about prozac having anti-inflammatory effects and whether that is helpful for pandas kids. If you look on wikipedia (yeah, I know) there is a section about ssri's having anti-inflammatory/immune-modulating properties. http://en.wikipedia.org/wiki/Selective_ser...ptake_inhibitor So, it is possible (as long as the doses aren't high enough to cause bad side effects) that ssri's offer some immune modulating/anti-inflammatory benefits (like azith, advil, pred). Something to think about anyway. I do agree that if ssri's are used, they should be used with extreme caution and at lower doses since pandas kids do seem sensitive to adverse side effects (which can then be confused with pandas symptoms). Anti-inflammatory and immunomodulation Recent studies show pro-inflammatory cytokine processes take place during depression, mania and bipolar disorder, in addition to somatic disease (such as autoimmune hypersensitivity) and it is possible that symptoms manifest in these psychiatric illnesses are being attenuated by pharmacological effect of antidepressants on the immune system.[16][17][18][19][20] SSRIs have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[21][22][23][24] Future serotonergic antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[25

I'm sure you know but just like with any doc....some are better than others and i woud look at a tmj doc who has some relation with movement disorders I spoke with Doxie a few days ago and her son was tic free!!!!!!!!! till he stopped wearing his mouth pieces for more than a week.... Besides all the things others have mentioned,I would also say also follow up on the fact he was sick with something a month ago.

Excuse me if i'm misunderstanding.....But doesn't Dr K thnk that it's possible that strep can cause TS? Or is that not what is being said, but instead is questioning this correlation all together?

AGREE!!!

So sorry you and any of us are here, but here we are together. I don't have any answers as a i am still searching and looking for that specific correlation.,combinatoin...thing is, i almost have too many things it could be.(head injury, teeth problems, neck problems,allergies, strep trigger, autoimmune including thyroid, arsenic overload, early vaccines and feaver? and on and on and things i am still looking into Lymes, other bacteria, salicilatyes, immunology, candida though that might be under control???? If you look at bonnies page it shows that some people took 2 months and if i am correct...some did it for 3 months no results...went off and then tried again later and they had some response....but i could be reading it wrong. i have not tried her particular vitamins (yet)

here is but one of many warnings about threelac http://www.holistichelp.net/blog/is-threel...-and-effective/ as mentioned above we have found candida clear by NOW most effective IF used in conjunction with a proper diet designed to eliminate candida the book I like is The Yeast Syndrome by Walker and Trowbridge as it helps plan the diet and has really good recipes in the back too re coconut if one wants to avoid using the oil, then monolaurin (which is lauric acid made from coconuts) is an excellent general antimicrobial that also has yeast buster properties. I get ours at my local branch of The Vitamin Shoppe(also available via their website) So would you or have you actually used coconut oil or just the monolaurin..on a side note, i heard that cocoanut oil is great for your skin also on the corn issue, did you mention your son had/has a corn intolerence? did you go as strict as caryn or were you ok with it in some ingredients.. not trying to derail this thread, but since i've got your attention........THANKS

what have you heard about threelac? My husband has been using this as he has a yeast problem. I beliee my son may have a slight problem too. Do you have a recommendation or a combination recommendation? I heard coconut oil is actually good in small does even though the epa says no because of the fats...but just like anything else there are good fats and bad fats.

Hi Micheal, Dr K wants to do a phone consult with us. I believe you are in FL. Did you have to see dr k or was all this done over the phone? was he able to order tests for you first, if you did have to go there? and what about the abx's....i'm hopeing you were able to do this all long distance? I emailed dr k before christmas, i am just trying to spread out the $$$$$.....Was any of this covered by insurance for you?

My son has horrible seasonal allergies....i've been waiting to hear if anyone has had success with them...this could be good news, so maybe i will go that route. yes the testing is coverd by ins, the drops are not but cost effect is same as zyrtec over the counter and i was told you go ther 1s vist...check up and increase of ingredeants at 3 months then at 6 months and then the 1 year mark....so 4 visits and then annually or by annaul....not every week. I looked up d-hist and the ingrediants on one of them show Ingredients: Vitamin C (150 mg), Quercetin (200 mg), Stinging Nettles Leaf (200 mg), Bromelain (50 mg), N-Acetyl Cysteine (25 mg) Faith, is the last item NAC the same thing mentioned by Caryn.....that would be interesting, iit would seem to tie some things together And when you say worked...do you mean for the allergies(whch would be nice) but also for some relief from their condition(s) (which would be great)? My boy is 9 going on 10 about 75 lbs...if you do d-hist do you think you could still add a little moreNAC if that is the same thing, that only has 25 mg i did find this and it says you need 3x more vitamin c per nac http://www.healingdaily.com/oral-chelation...-what-it-is.htm so maybe ds could take this product and 25mg more of nac

Now, on the issue of corn. It is my firm believe that we are sitting on a sleeping 'giant' if you will. I think that because of the corn refiner's assoc. in the States that there has been a real absence of 'anti' corn testing, etc..... I would not be surprised if in the next 10 years we discover that there is a similar autoimmune disorder like Celiac plaguing folks with corn intolerance. A century ago there was much data on Pellegra as a harmful disease associated with too much corn in the diet. Corn is not nutritive. It is harmful, especially now that the gov't has made it legal to genetically modify it by fusing DNA from weeds into the man-made seeds. So to answer your question, no-- there isn't a named disease associating Corn with a specific autoimmune disorder like Celiac. I will tell you this, a growing majority of celiacs in the States are finding that they can no longer eat corn because it does the same thing to them that gluten does. Go figure. So I step down from my stump. Sorry for the long lecture. My passion just gets the best of me sometimes. Ok if you look up Pellagra ,the same definition as your spelling, it shows related deseases. and it talks about Caries which affects the jaw????? and if untreated affects the brain!! http://en.wikipedia.org/wiki/Caries

Oh my goodness Caryn i know certain things hide gluten....but that corn list in rediculous..... Did you elimate all of that? was is ok at minimal levesls. did you just eat potatoes and meat.......no frozen stuff either.....

well i'm certain the condition stems from my husbands side as he tics and so does his mother and she's had a nervrous condtion on that side also i see my hubby's brothers do some weird things and so do their kids they are mutts English, French, Belguim etc and no slavic nations in that group and hale fromt the Maine area where i believe more of that part of the world settle some time ago...And i think there is English connect i've mentioned eppicgentics before about how diet affects generations to come....and turning switches off and on. I am Polish. Zero problems here other than alot of drinking I notice a lot of Polish researchers here.... Anyway....this made sound mean or inappropriate....but i am a just talking out loud and i am referring to actual knowledge of kings and queens, and keeping the money in the famiy and not going outside your rank and i think this was more common in English type cultures......Marrying a cousin or uncle ......a little to much in breeding?????? Yes i know it goes on today even in the USA(for other reasons) Again, just talking out loud as i don't think this is as common in African or Latino Cultures.....And maybe there will be a surge in areas where that practice starts or continues It just crosses my mind, as the populatons grow and cross over, these conditions are observed in people who are black but probably have a grandparent who is white. And then there are other who are just triggered by the enviromental, toxins, viral or structural ssues. everyone is subseptable to Malaria. Now that makes me think....husbands grandfather had maleria during the war....he had nervous problems after and then his daughters had first case of history of nervous problem and slight tic, not hs son that we know of hubbies mom was the only one to have kids out of those siblings. Hubby had seizue at age 5 Ds has had at least 12-15 cases of strep from age 2-8 sorry to digress and not trying to offend anyone if i did

ps he would be completely tic free inbetween sesstions which agian i would say was pandas as they remitted in 4 weeks this new session has been almost 10 months

OK ..i'm back to chiming in....you guys probably thought i was gone...no such luck (computer had a virus this time) when my boy was 5 and his tic changed from eye blink to shoulder shrug his bun/crio was 42 on scale of 6-25 ....docs said don't worry about it (isn't there a scale for areason) now age 9 bun/crio 47 on scale of 6-25 doc's still say don't worry????? ast 34 top range 32 alt 40 top range 30 this new tic onset started 4/6/09 and draw was done 4/23/09..as per previous posts we saw a doc on 4/5/09 (the day before) since ds said he didn't feel good absolute eosinophils 661 on a scale of up to 500 thyroid problems run on both sides of family, my side hoshimots and low thyroid none serious lupus on other ds' tsh was also slightly out of range i've done gf/cf have not done corn elimination...are you(they) saying this corn could be affecting kidneys if we go corn free...how long till we see results ..i know some say a day, but could it take longer, like 2 weeks to give it a fair trial our should we go a month? we were gf/cf for 3 months and i don't wont to go 3 if it only takes 1 month for real results.

You mean immediatley after??? or long term???? when my ds has had anything like that he is a mad man when coming out...i mean i've had to physically restrain him but it would go away in a few hours...they said that is just a side effect for some kids??

I'm not sure if i'm of any help but..... Doctors do not know everything, and evidence and information are always changing.(thank God). It is called the PRACTICE of medicine. And i have to try to remind myself of this. This earth was flat and the center of the universe. Smoking was safe but changed that to second hand smoke was safe. Celicas didn't cause seizures or tics. We all know these are incorrect. Does the bbb close at 2? can something else open it? You cannot fight your genetics and i know that is incorrect as people who's parent died in there 40-50s live to their 80's via diet and exercise and other Check out epigentics and the work going on there. I guess i am just trying to give people hope as that it has been given to me here.

did your son have any vocals???

1/2. Clonidine/Tenex (I'm currently on Clonidine) 3. Topamax (people here have good success with it) 4. Marijuana (your local laws may vary, but it seems to work very well for most people) All the rest of them have horrible side effects, don't work well, or both. how are you doing on the clonidine?? any info on intuniv?

I emailed dr k as per someones suggestion and he thinks there is good chance ds has pandas even with the cunning numbers i posted. he wants to do a phone consult... I have family up in NE but i heard dr k is open to something triggering this ds add/adhd seems gone or minimized as per brainbalance program(or did he just get older?) he just tics..... saw dr gargcia(tmj) on 12/21 said he grew so much he is going to make a whole new set of retainers but adjusted old one 12/22 12/23 tics so mininal i had to watch for a long time to find 1 on night of 23rd said he doensn't feel good and has a bad headache..i gave him ibuprofren...still really so good can, he's so busy with cousins i can't see any tics as he scurries off to next thing 12/24 starts first vocal tic >>>i'm so upset, devistated, beyond sad....i want to curl up in a ball is it the adjustment, oh PS he tells me an old cavity has been bothering him for a week(just told me 2 nights ago) the illness the night before or the fact that since he was doing so well ,i let him be a kid and eat junk for those 2 days while visiting relatives(all they had there were pop tarts and other holiday sweets (really) now vocals are almost constant..k k k..ch ch...snort can dr k persribe some tests for us or some high dose anti's or will he be able to get my ped to do them or will i have to go up there is this the guy to see i would like to try high dose and longer than 10-2week anti's again not sure if my son is allergiec to penicillen or if it was rf getting in his joints???/ money is so tight and would like to get more things done under insurance anyone's thought on any of this are so welcome

we did metamatx through Brain Balance and ds only came up a 1 on caisen.... so as per program and trying it even though no real numbers ..we went gf/cf for over 3 months and we were strict about it..... my son did have some mild psrysoris or was that eschzema...that went away and i hear that wheats flare or can cause that. his mood did get better but he was never over the top but i did feel like i would walk on egg shells around him sometimes his aminos were all over the place though. we went off and no real change but again we had no real numbers...curious 3 other people with the same draw time and no food allergies to show either...but i don't think ds has food issues...maybe digetstive....but defineitly seasonal and so milk will be elimimated soon to keep histamines down...looking into sublingual drops through a traditional allergist you should absolutly start 4 and 5s at least.....once you find foods it kind of becomes a way of life...of course being off diet is eassier but i try to rotate and no artificials

Thank you for finding all of thess Hopefully this is confirming what i've heard dr k thinks in that all of these conditions are tirggered by something...if i'm not miss quoting someone. I have emailed dr k my ds history and he does think my boy may have pandas and we are arranging a phone consult. I've got to slow down thought $$$$$ Mind you i would sell my house if i could be sure whatever was the cure!!! Maybe i can take this one to my ped and have them work with me w/i insurance and referrals to other specialist ie immunologist Does anyone know If i consult w/ dr k can he order tests or can he, will he get my ped to order them??? Thanks again PD for all the leg work and everyone else too!!

I think your correlations to your sons illnesses are too close to be dismissed With all this being said and I'm just trying to clarify as i am not as technically savvy as most here... but maybe we can start including the word (acronym) PITANDS more...maybe its me being selfish...since the last couple of times my ds' strep tests were neg but still had some head inflammation/illness things going on!!!!!

i know my kid reacts to red dye. this may not be a popular idea...and i am not having great success with this..maybe because it's like trying to catch a running horse,..and dr g said my boys mouth grew so much in 6 weeks he is making a whole new appliance...my ds is 9 going on10...though there were 2 days with almost no tics before christmas.. but if you look at the the tooth eruption chart your wisdom teeth "typically come in between 17 and 21..but my ds had his first teeth at 2 months and a friend didn't get her wisdoms till 29. teeth seem to be an across the board issue. and if you see a tmj guy ...they are not all the same......the nerve location in these guys might sit different for them that effects them where for you or i it wouldn't be an issue... just another option i would love to here from everyong what supplements worked for them...i've tried alot and i can't seem to pinpoint any...maybe i need to try the L's and the baths

I would love to hear what he tells you.. do they offer sublinguals??????? here's s good utube again, i think this is lower dose because it's daily and if i am correct its just the antigen/no fillers if you could ask your doc.about how pure it is..and i think they are hoping for fda appoval this year??? Oh and i think they also start low and build up on 3 month intervals and supply 3,6,12 months order so the first set must be really low and you dont' have to go every week!!!! i think this is one of my next steps and get his levels retested this month and eliminating salicilates

I am so sorry you and your child are going through this!!!! I am so sorry for everyone here!!!!! I feel like exactly like you do. My worst times are mornings because i don't what i'll wake up to and getting him off the bus...analysing how bad/good he doing and does that measure how is day was today and the rest of the day.....And even though he may be doing well, i have a hard time being in the room with him(even then i am thinking about him) because it like someone yanking my insides as i can't stop watchng to see what else is going on...I think the realization is becausee modern medicine has not done much with this......so it is up to the parents to observe, observe, observe and figure out what was the trigger and why did it change and change and change...it has consumed me.......it is not like diabities and you live normally and dont'eat this or that......YOU need to find the trigger and figure out how to get rid of it and get the docs to cooperate if they have something you can't get on your own. My hs is vvverrryy cooperative with what i try. Maybe you need to have a stern sit down with your ds and say we are trying this for x time and then we are trying the next thing.(and you know what is helping, now we all get skeved out by the processed stuff, it becomes natural).and this is for ds and ds's kids, so if his kids are triggered maybe he will have a good lead or by then, all of us wonderful parents/individuals will have figured every combinaton and trigger and rememdy! Tell him this is this is the most important thing to you as mom(in your life right now)...and you appreciate his positive attitude and that helps you and you hope he is right, but in the mean time lets see what else we can do and we will all be healthier for it!!!