Fixit

Thanks Chemar, i have a few questions as my head is flooded and the hamster can bearly stay awake in the carasel... is this the genetic link D3 or are they still looking for it, or they've excluded 60% and are still looking "Molecular Genetic Studies: The TS Genetic Consortium has pursued a total genomic search in 11 large families from the United States, Canada, the Netherlands, and Norway and tested over 600 genetic markers under the assumption of genetic homogeneity and incompletely penetrant autosomal dominant single major locus inheritance [448, 449]. Over 90 percent of the genome has been excluded [450]. Comings and colleagues [451] reported increased homozygosity for the D3 receptor gene, but there has been at least one failure to replicate [452]. A role in linkage analysis has been excluded for several genes involved in catecholamine (D1-D5 receptors and DBH, DAT, TY, and TH genes) [453-457] and serotonin (5-HT1A receptor, tryptophan oxygenase) [458] pathways, under incompletely penetrant autosomal dominant or intermediate major locus models. There have been several reports describing chromosomal abnormalities in single TS patients, including a 9p deletion [459], an 18q deletion [460], t(7;18) translocation [461], and a 46 XY, t(3:8) (p21.3 q24.1) balanced translocation [462-464]. Although a positive multipoint lod score of 2.9 was initially obtained on 3p in several pedigrees [462], subsequent analyses using improved map data and additional markers led the authors to conclude that this region was not involved in the etiology of TS [464]. A YAC spanning the translocation breakpoint at 18q22.3 in the TS proband carrying the balanced t(7;18) translocation [461] was identified; among the limited number of relatives in the family studied, no one without the translocation was diagnosed with TS [465]. Co-segregation of the translocation with TS of course could be coincidental, especially given that the frequency of a carrier of a balanced translocation in the population is about 1 in 1, 000." And then in this study http://www.sciencedirect.com/science?_ob=A...cd3de685942f3c7 it talks about a brain inbalance developementally? and plasticity...that's what the brain balance program tries to adress....which we did..his tics did not go away which was our main concern....some teachers were a little concerned in 1,2,3 grades about add/or adhd and we don't seem to have that this year??? easy going teacher, he grew up, or brain balance???? accounding to what they say we scored him and the scored him????? We just have these crazy tics???? Or is this it??? .0001 TOURETTE SYNDROME [sLITRK1, 1-BP DEL, 1264C] In a boy with Tourette syndrome (137580) and ADHD (143465), Abelson et al. (2005) identified the deletion of a cytosine at nucleotide 1264 of the SLITRK1 gene, resulting in a frameshift at codon 421. If stable, this frameshift would result in 27 amino acid substitutions, followed by a premature termination codon. The truncated protein would lack a substantial portion of the second LRR domain as well as its transmembrane and intracellular domains. The mutation was also found in the proband's mother, who suffered from severe trichotillomania. The mutation was not found in 3,600 control chromosomes. .0002 TOURETTE SYNDROME [sLITRK1, +689G-A, 3-PRIME UTR] In 2 unrelated individuals with Tourette syndrome (137580), Abelson et al. (2005) identified a G-to-A substitution in the 3-prime UTR of the SLITRK1 gene at position +689 from the TAA stop codon. This variant, termed var321, replaces a G:U wobble base pair with an A:U Watson-Crick pairing at position 9 of the miRNA189 binding domain within SLITRK1. In 1 of the families, this mutation was also identified in the proband's mother, who had facial tics. This variant was absent from 4,296 control chromosomes, demonstrating a statistically significant association with Tourette syndrome (p = 0.0056; Fisher's exact test). AND I AM SO TIRED does this explain his tic to pandas....or just 5 or 8 coinsiccdences, or allergies? AND i don't want it to be this kind of genetics...but can we get tested, I just want someone to give me some answers And so if it is genetic in this manner as opposed to Low Iga levels...and praying my son who is so smart, FUNNY, and kind, can have a normal life and get married, he could then do genetic testing so he and his kids won't have to go through this!!!! Thanks again!

prior to this episode i could always see a tic get strep test go on anti's and gone in 3-4 weeks. even when it seemed viral or seasonal allergy it wold go in 4 weeks. this one started in april just in his legs...and was severe onset....it remained but lessoned he added some hand stuff as leg stuff lessoned, would see occasoinal jaw jut did brain balance progamjuly-oct and gfcf....things were mild then... i guess... got tmj appliance 11/12 no change ...but in the last week his tics are morfing everyday somtimes within an hour...but his feet/legs seem gone and seems like its moving up his body...i think hands are less.... so is it worse??? would it have been better to leave it in his hands...assuming i'm leaving anything and i have any control...is the appliance doing this or is this his progression irregardlless, can the appliance move it out of his body in total? Do you have to watch what you eat while you detox ....we eat well...but do you also go gfcf or anything? and i just realized this kid does not drink???? almost never finishes his drinks no matter what???? could that be something?

Hi Tattoomom,...I'm so sorry you had to come back... As far as the genetics, I could be wrong, but i don't think there's a gene... So far i think its immune, celiacs, allergy(food, pollens), toxins, structural (tmj), infections(strep, virus),,some tendency or predispostion that gets triggered by something, due to inflammation of some avenue. I agree with lukesmom it's so hard!

I had ds hair sample done in Mayish...he came up high , out of range for arsnic.....told a doc about and they don't subscripe to hair samples...why is that? We've been eating healthy and.naturopath gave me some things but i'm not sure about that stuff... somone mentioned preservatives in chicken and got me thinking againe.... any thoughts and any detox recommendations and how to it properly or what kind of doc you would suggest?

is there anyone who had a bad experience with this or heard bad results?

Michael Michael's post reminded me that we are also doing some functional work, to accompany the structural. Dd is doing myofunctional theyrapy, to rebuild degraded msucles in her jaw and cheeks, and to learn proper chewing and swallowing. Her upper jaw arch is so narrow, there was no room for her tongue. The excercises are supposed to correct posture as well. where do you find this kind of dr...i think i need some of this for m ds and his posture as well?

I think its very plausibe...my ds who i am dealing with has the same crazy toes as his father who tics...so why couldn't their jaw/neck structure be the same? And since my dh has 2 different parents, my son has some of me in him and puts the structure a little differnt from that causing different tics...or maybe that irrelevant and the one side is more prevelent and that is the issue. I believe he also had pandas now pitands. Low Iga would explain over reaction to spring pollens when this episode set in....(the day before onset 4/5/09 no tics at all for 5 months, ds asked to see doc said ds had shiners ,glands swollen, throat raw, ears don't look great.) 4/6/09 jumping hundreds of times a day..Lord help me.(ps 4/5/009 highest pollen count 3800ish average count in 20's. also on 4/5 we were driving in car for 8 hrs...pinched neck? I also believe he also had rheumatic fever at 5 from strep as he started the shoulder shrug we never saw before and when we took him to the hospital they said his joint pain was from the penicillen ...why didn't they say or it could be from the strep we are still fighting for a couple of week...(how can i find out if he is really allergic to penicilian,,,,its good to be able to keep things in your arsinal)(or was he grinding his teeth do to the infection which caused the tics....i am open, why stop at 1 possiblity But he his first teeth were out at 2 months and i can remember hearing him grind his teeth in his crib at 1 year old....eye blink with allergies then strep started at 2. what came first..the chicken or the egg As per Dr stacks this morning whom i saw over thanksgiving my ds joint in ground down due to grinding teeth...he's a little concerned this could lead to authoriis in his jaw.....isn't arthistis an autoimmune disease...so if that joint is now more pouruous because its letting things in is that why he grinds his teeth.(and a ton of teeth issues still) I've gotten the appliance from Dr Garcia about 4 wks ago and i think dr g is going slower like Dait's dr....anywahy dr g and dr stacks both say it can take more like 6 weeks to see results...the others were show offs.(i am so busy but there is alot to fill in) both felt spasms in my kids neck and alot of other stuff. not one obvious item.(maybe i need to get orthotics to help him stand straight too, that's just me thinking) Both are still teaching! Here is the theory...i think we used to think that whales (or dolphins or was it elephants) couldn't talk...well we just couldn't hear them because the tone was so low we couldn't hear them with our ears. so instead of pinch were there is pain and things are constrained....its more like its too open w/o pain and a flood where there is an overflow of information And this is still more of an art form and the exact 1/2mm for someone might be 10 year from now as they are still learning and this was a stumble on as a correlation. So only a handful of dr know or are doing anything with this. And my honest concern is we're trying to shoot a moving target, my kid has grown at least 2 inches in the last six months! To me, my kid is obviouly prone to tic disorders,,maybe one causes the other, maybe they are seperate things i have to watch, but Doc/Nero's should consider the tmj and low immune system as the "genetic cause" they can't seem to find and look at other things outside their comfort box....if you told me drinking wine makes your fingers nails hurt, then so be it .....let's be carefull how we say things

Sorry about that, i guess that link was hyjacked. Here is one i hope that will work from the doctors http://www.thedoctorstv.com/main/procedure_list/568 I wonder for my son if i should elimate salicilaytes??? that is in fruit and in some more than others and has to do with ripeness I think Kim found this http://www.journals.elsevierhealth.com/per...tent/0900729abs about tics and low iga And this explains a little about iga http://www.webmd.com/a-to-z-guides/immunoglobulins so opens you up to seasonal allergy, pandas, pitand tics..so if you have sinus, facil pressure couldn't that cause you to grind, even sensitivity to msg causing inflammation...or maybe for some its just one thing like allergies to cats. and i think its all related......our bodies are like a tooth pick structure resting on a ball...move the ball and the paradime has to shift and i think if you neck or jaw are out of wack that can open other things up because your nevous system is sending out other messages.(..or if your immune system is off you might grind and cause structural problems. ....the problem can be caused going either direction...it's the chicken egg thing.....i am open to any possiblity and the bodies abiltiy to heal itself...(speaking of other direction, i just thought of this..maybe my kid needs orthotics help him stand straighter) Sorry if i sound preachy....i read some post, i'm totally off tangent and i'm probably being over sensative...some docs didn't/don't believe in pandas and parents were told your focusing on something crazy (i feel like some here might give off that same feeling)and now i think there will be a new surge in it and i hope pitands and who's to say the next/last missing piece isn't something that hasn't been hoaned yet(tmj)...that might need a fancy laser to adjust somthing to a 1/100th of an inch. I think we all need hope here. Maybe it's all immune system since there isn't any nurtiants in our food anymore. And Laurena82 thanks for coming back from the other side to pull us all over this mountain!!! When things are good ,I can't bear to come here because I am on constant defcon 5, and i need break as my heart breaks for my child and everyone's here!!! And I mean no offense even though things are actually ok righ now, i've just had a rough week.

where would you go for vision therapy....my ds does have a tracking problem it's a little better(i think) with some eye exercieses we've done... but he says it makes his eyes hurt? i too would like to know about neuro feedback vs cranio therapy and were do go for this???

I went to Dr Garcia and Dr Stacks. And let me say they are both very personable characters, who do want to help. Real quick if i may....my journey with this though time wise short there is alot to tell and i will have to write it up tonight but let me ask these 1)CCC, Dalit is there any history of tics for either of you?ccc did vocals go away during this time and let us know what happens when your ds gets adjusted. 2)Micheal have you gone to get readjusted? Dr St thinks the device for my ds per Dr G should be 4mm higher which is quite alot when you here them talk about 1/2mm increments. And as dr st says right now its more of an art form then science ie 1/2 dose this, to the right does that. But dr G might be going slow like Dalit said??? Also MT i am waiting on my sons camK....his first report looks like yours but high end of dopamine (i think)(i wonder about his Iga levels) 3) guy123.....did you see where your last set of teeth typically come in at age 17....though a friend of mine who had to have the gamma knife for tmj at age 30something (as i was talking to her she realized) her wisdom teeth didn't come in till 29 ish when her problems started And both docs say it could be immediate but could take weeks to see results Not seeing result yet, and a couple days seemed worse, very sad,..but last night my ds said he thought it was better?????? I think he's hoping that will continue and he can very articulate about whats going on...so i don't know Maybe what i see and what he feels are different? 4)Doxie since i'm writing, didn't you say you thought it was worse but he felt better....maybe i'm on that curve!!!!!! He's still doing well right!!!!

I live outside Atlanta Ga also I had metametrix done for my ds. As i did the Brain Balance Program (maybe better suited for kids with autism) and he showed no allergies but almost a 1 on casin. So we did no milk or wheat of any kind for 3 months(no chees, or any grains other tha rice). We didn't see any improvement in tics...but his Addish stuff seemed better with that and the progam or was he just getting older? Anyway, he does have HORRIBLE allergies to pollens, grasses, weeds, dust mites as per physical evidence and raz test. So i am going to follow up on this which i found before this clip was made and i was glad to see some more info on it and it seems more natural and much safer than shots...also The Doctors had something on SLITs a few months ago http://www.foxnews.com/video/index.html?pl...45012f3ad000096 I went here and doc seemed never heard of tic correlation but didn't seem dismissive either http://www.nw-ent.com/ Same ds mouth itches with certain apples and fruits and depends on ripeness...and since he is typically such a great eater explained why he never ate fruit. He and some other people i found out after talking about this do fine with canned or processed fruit. I don't know of anything in US that does food allergie drops. And just a thought to put out there So this makes me ponder about IgA and how that mainly protects your mouth, throat, gut, sinus and respitory systems and that study that correlates Ts and low Iga and then how Strep and seasonal alleriges would effect and tics Anyone know where i can get an Iga test done?

Thanks so much....it is so nice to hear the good stories I hate dwelling on this but it feels like that's all I can do!

Doxie, Micheal, others How is it going??? Doxie are things still holding...improving... Micheal do you still have that calm feeling and any other improvements>> i noitce for a week my son had a chew tic also....i changed the mouth guard for football and it stopped?????? when i changed guards i noticed on one of the packets about the mouth gaurd, tmj and brain injury this is not the one i kept but i might have to go back and get it http://www.brainpads.com/ then go under technologies and it talks abou that tmj space

thanks everyone.....my walk in clinic...where i go mostly because my kids never exhibit anything or complain till after 7pm on friday night, will do it...young doc who dosn't the arrogant "i know everything and you're crazy" aire thanks for panda paper thanks for follow through....i'll get test even though he had 1 dose of meds

Just got my kit in for cunningham test... however took ds to doc yesterday...feaver swollen/red throat.... quick test neg doc gave me script for azith 200mg/5 ml 2tsp 1time for 5 days i was going to wait to give him med til i got blood draw....but he had 102 temp last night so i went and got it filled and gave him his dose so..should i still get blood draw today...waiting on doc who said he would write scirpt for draw...or do you know lab i can just walk in...quest or other or should i wait on draw also do i need to refrigerate kit in mean time

Hi Micheal.....here are some of the other vestibular things i mentioned....i'm guessing it woud take at least 3-4 weeks(maybe 8)(if dealing with this a long time it will take time) a couple times a day to see resultss JMHO ,,,,,are there any therapists out there??? http://www.celebratethechildren.org/Pages/...rationInfo.html http://www.developmentaldelay.net/page.cfm/209 http://www.livestrong.com/article/14670-se...ome-and-school/

This goes out as a question as much as a suggestion... What about oil of oregeno in the mean time? http://www.lewrockwell.com/orig/sardi6.html http://www.mayoclinic.com/health/oil-of-oregano/AN01195 anyone have success with this???

Well I’ve thought about this a lot and I think this is very exciting. Here is some info on tooth eruption http://www.healthopedia.com/tooth-eruption/ Seems the *burst* ages line up. Then add some hormones! • Upper teeth: • Lateral incisors appear between 8 and 9 years old. • Canine teeth appear between 11 and 12 years old. • First premolar appears between 10 and 11 years old. • Second premolar appears between 10 and 12 years old. • First permanent molar appears between 6 and 7 years old. • Second permanent molar appears between 12 and 13 years old. • Third permanent molar, also known as a wisdom tooth, appears between 17 and 21 years old. Lower teeth: • Central incisors appear between the ages of 6 and 7 years old. • Lateral incisors appear between 7 and 8 years old. • Canine teeth appear between 9 and 10 years old. • First premolar appears between 10 and 12 years old. • Second premolar appears between 11 and 12 years old. • First permanent molar appears between ages of 6 and 7 years old. • Second permanent molar appears between 11 and 13 years old. • Third permanent molar, or wisdom tooth, appears between 17 and 21 years old. Usually when the second permanent molar appears, most of the 32 permanent teeth are present. *I know people have been happy with cranial therapy* I think a lot of people here have heard of the handle institute http://www.handle.org/index2.html And I’m guessing they’ve had some success and they are still around, maybe they’ve had it all along Check their exercise list - the crazy straw and it mentions the tri nerve -the face tapping along the tri nerve line So MichealTampa maybe you need to do some additional tapping or vestibular exercises I think I saw a site with vestibular exercises. I have it somewhere, I’ll check Now lets think further…my son was breech, the doc’s didn’t know till I was in delivery, so I had to have a c section (only adding to my…be your own doctor/advocate thing, ) Well he hadn’t moved in a good 2 months..What the doc thought was his behind under my rib cage was actually his head , he was sitting up…do you see… he wasn’t head down tucked to chin for those last 6-8 weeks …maybe that’s when you stretch some of those tendons, nerves and for all the moms having c sections, maybe that’s when some of our development starts to come into play. it makes so much sense if you watch the great reaction some of the patience have had. Now…Lets say you have an ear infection or sinus infection…..let’s add MSG (dose that contract or inflame). If you’re allerigic to salicilates(I think they act like msg for some) then that’s irritating your system. Or lets add Strep A or B or virus ….besides the basal G…maybe the strep sends messages down or directaly attacks the Trigeminal nerve. (Strep can cause organ failure for goodness sake) http://www.healthblurbs.com/streptococcal-...-and-treatment/ I called a friend of mine who had to have the gamma knife surgery for her trigeminal She said that worked but she is still on a low dose of Tegretol. Which sometimes fails about 1% of the people which was her, hence the surgery. (if she gets msg she done for for a couple of days)Anyway Tegratal was originally designed for people with epilepsy but found it works for people with Tri-nerve problems……SSOOOOO maybe….that’s why all the meds they try to put people with tics on don’t work…they are targeting the wrong area…back to Michaeltampa…maybe you need a low dose of Tegretol…..(I’m not a doctor or always right ) I’m just trying to think and collect info from all of you and people I know. Let’s encourage this…its gonna take tweeking of this product and any other ventures including specific exercises and maybe NEW medications that might come with it and of course tweeking for each individual…Look at the vestibular picture it sends messages everywhere. ….. I think they got something real! One more….I’ve always been able to have ds tics go away3-4 weeks after antibiotics.. Prior to this we were 5 months clear, we are now into this 6 months …he had his braces off in early March and a perminant/affixed retainer attached top and bottom so much more cumbersome than the 8 braces he had on his front 8 teeth. I felt bad for him, I would have ripped it out. For Trigeminal they talk about recent dental work….. April 6, 2009 all heck broke loose…also the highest pollen count of the year…prior pollen counts were a ridiculous 1500ish then up to 3500. I live in GA (pollen/sinus/terrible mouth piece ?) PS Maybe someone would like to make part 2 of this thread..just a thought.

you mentioned in an old post that most of your stuff happens on the right side....so for yourself, have you checked the thread about Dr Sims. it revolves aournd the trigeminal nerve and if you just stuck with that theory, that's where a focus would be.

checked there are 2 chapel hills...i doubt it would be the close one4 hrs away madision county/orange closest city is Atlanta next i guess woud be Birmingham AL

THANK YOU SO MUCH!

started biotics on 4/7/09 for 14 days could tell wasn't getting better...is it right that they are not making anti's stong enough felt things weren't reacting the same tried to get docs to extend bx's ....no go did blood draw on 4/22/09 exactly 14 days after start could that be why aso came in at 71 and it says DNA(DS)anti <1 in range.....did they do the wrong test on that one am i correct that that these may not be meaningful COULD it be some other bacteria??

thank you... I live in alpharetta ga... i can't find an immunologist either..not one listed on ped's list and if i found one they may have said i need a referral..i hesitate to call my "not widely accepted ped can i give mortin everyday and for how long can i continue Called for cunningham test no response yet...maybe they are off today. called dr L this moring have an appoint november 20...receptionist seemed a liitlte put off...i asked her about why a little put offish...she was nice don't get me wrong but sort of implied maybe Dr L a little overPandas/or its taking too much of her time from other neuro stuff ie seizures

cephalexin 250/5ml susp 100ml ...14 days too low?? not long enough this was the worst i've seen him he's at least 75lb, eats like a man and plays like a 9 year old boy and what about the doc saying aso was ok..in may? is that becasue of the cephelx in april and/or can titers not necessarliy reflect right?

No,i couldn't get a doc to continue anti's, sorry for the missunderstanding he was only on anti's 7-10days in april, no docs in Ga subscribe to pandas my pediatircian said "yah, that's not widely accepted" with new footage from sammy and some other stuff maybe i can persuade someone down here ps on april 6, 2009 highest pollen count of year 3500...prior highest days were 1600ish his body fights but just can't take it after a while had aso antiB? tested in may doc said it was normal...what's normal? not being sarcastic. i don't know if he gave me the number but from what i read per buster these could look normal and stilll have strep, right? Been trying food GFCF, highvitamins, aminos, exercises