Fixit

Thanks patty, gives me the will to continue and maybe i just haven't hit it yet i'm looking into mycroplasma as well, some good insight

what is so weird is that yesterday 2/4/10 as i looked up this thread...(i was curious if there was any new info regarding vaccines) i didn't see anything new... then last night...as i was flicking threw the channels...i don't usually get to watch tv this early...on Inside Edition...this was exactly the story that popped up. It only reinforces that idea of "power of intention" and i also told CHar a couple of days ago about intensins as there was a set of cups from my mom...i didn't want my kids or husband to break them..i was somehow worried about them breaking...so i moved them to a safer location.....well, i'm extremely coordinated and can't remember the last time i broke anything, and i have a great spacial relationship......anyway....i was putting something away and I broke that very cup, it fell and shattered,,i would usually as it fell be able to catch it and not have it break...I'm not the breaker in the family...needless to say i was mad at myself but yet it got me back on this power of intenstion.. and low and behold this pops up that very day... anyway the broadcaster noted she looked normal but later noted she had a side step...but she was going inbetween cars and maybe that motor action isn't quite perfect yet....it also said she was no longer see that first doc....maybe because others have ostrizied him and she wanted to distance herself....but if that's the guy helped i wouldn't care if he had feathers like a quack too..... they also mentioned a hyperbolic chamber for oxygen... So my next question is has anyone bought a personal oxygen bar / machine and/or used food grade hydrogen peroxide

Thank you so much everyone!!!! Cp inspiring as usual, i know its in God's hands ultimately and i don't know if i won't get hit by the perverbial bus...but "this" not knowing just hangs over and doesn't ever drift away. You said"I hate the thought that every time he makes noise it is just a reminder I have not stopped this for him. " If someone could just tell me he's going to have this thing till 16 and you'll be done i could "live"with that....i'm not living and its the total open endedness that's killing me. When you said your boys exploded at 12...did he not have any tics prior to that??? It seems so late to kick in like that. Was he sick or have shots just prior to that? Chemar thanks for the ok on meds.... there is always such guilt....and especially since i currently feel like a failure and thanks for the heads up on the site. I guess i'm a little freaked too because i've got 2 younger boys who are fine and want to keep it that way.(and no strep, no head injuries, no allergies, and no spine/teeth problems like first son) Cute guy123....ds is dear son and dd is dear daughter...doc said he would try 1/2 tenex at night and wanted to wait a month if we needed more to maybe add a 1/2 in the morning maybe.... and i told him i'm just getting ready...i didn't say go, yet.... i have a couple of more things i would like to try first and still persueing pandas/pitands as to ds' onsets and remissions And if anyone remembers...i talked about onset with strep and allerigies....well the vaccine talk made me realize, his b-day is in feb...and he would get his shots and 4-6 weeks later would be early april when we would have an onset....now his allergies are reallly bad, but what about the vaccine trigger..(i don't know) does it matter anymore...did/does it all this just turn into ts Anne...thanks so much for sharing, when you say "Our son was the worst between 7-11. We did begin medication at that time, but I wish so much we had not done that".....why...if it made it better..did it give him other problems???? I'd love to know....maybe that would give me the strength to keep going...is it that you think the outcome would be the same? But did it make it easier for your boy?? jdmom and faith i think we are all 1 year apart. my boy will be 10 soon..and jd you summed it up perfectly, "If I could fast forward to the future and see my son as a young man with a happy normal life and not socially ostracized, I would wish for that and breath a deep sigh of relief. My son will be 9 next month and I worry myself to pieces about him every single day. In April it will be 3 years since this started and I know the anxiety is taking years off my life. I think his tics are mild/moderate, I'm really not sure exactly. Some days below the radar, other days obvious. Fortunately so far nothing that is disruptive in the classroom, etc. I understand we are going into the worst years and I wish I could just hold my breath until he's 20 and see him coming out just fine. Fortunately, my husband has a much more positive outlook and just keeps saying he is going to be fine. " My hubby worries but says the same thing as yours,,,but when it's your own hubby its not as effective as someone else. I seriouly would like all the dads to get on one thread and say...this is so and so's dad "don't worry" and just all chime in Faith, my trigger point is the same...when he gets off the bus..i'm looking for the new tic and some problem...I hate 3:45pm! " I worry everyday when my son walks thru the door after school and feel scared to death that this will be the day he tells me something not so good happened at school. but he walks in seemingly happy, "hi mom", and its just another day, praise the Lord. he is pretty social, and altho I think he has other issues, they seem to go under the radar with the other kids, for these days, everybody's got something. he's a typical boy, fun loving, cute, pain in the AZZ!" Well yesterday..ds came home and said"mom i was in PE running around and i was sweating and each time i wiped the sweat with my hands, my hands felt like they were being stung from a thousand bees"....we've also been dealing with some sort of raw, dry cracked, seboria type thing across his knuckles on his left hand since thanksgiving..he's right handed....THIS Kid always has something!!!!!Especilally with the skin!!!!! Dermatoligist help but they just give you something for the skin, which helps, but what is triggering all these skin reactions he gets??? Should i go to an immunologist...i tried to to to one on my own last summer but immunologists want a referral from a pedi and Pediatricians Slsukkdfhskh!!!!!! I am tired of being dismissed and tired of going to the doctors of any kind!!!!! Just frlkononesidufslgnsa n s TIRED!!!!!!!

I just got off the phone with the Neurologist we had seen in PA, as I am considering putting ds on Tenex or Chlonidine since my boy seems to be getting a bit worse and I can see him getting frustrated occasionally. I just want to be ready to roll when he’s had it. And I’m obviously not smart enough to figure this out. Anyway…as I sit here and try to type between my tears…..Oh help me……I asked the doc if this is the time things typically gets worse since he will be 10 and does it usually get better after 12. He said there is no such thing…it is what it is...it may get better it may get worse and there is no pattern!!! Is there no hope!!! I need a life boat over here. The only thing that might make me feel better, is to chalk it up to my constant feeling these docs don’t know anything anyway, they were able to study a book better than you or I, and now get paid for that ability, as they would not look at diet as a cause/effect(unless it’s medicine) and no such thing as pandas. And I can’t find a pediatrician to think outside the box of what they are told, even if a parent keeps saying other wise. Can someone tell me I’m right on this last note, and the doc was wrong to say no pattern, so I don’t completely loose it!!!! As I’m typing this trying to be calm I found this site http://tourettenowwhat.tripod.com/so_what.htm and below are some of the things that just helped me **And even though I found this, please still tell me I’m right about the doctor phone call thing, please I really need some moral support** If I’m wrong don’t tell me…I can’t take it right now!!! Can all those hubands who say “don’t worry about it” call me right now!!!! Some closing words about prognosis from the "real" experts: "The individuals with TS who do the best, we believe, are: those who have been able to feel relatively good about themselves and remain close to their families; those who have the capacity for humor and for friendship; those who are less burdened by troubles with attention and behavior, particularly aggression; and those who have not had development derailed by medication. Children with relatively milder tics may become chronic patients and some with quite severe tics may develop into outgoing, happily married and successful young adults." Neuropsychiatric disorders of childhood: Tourette’s syndrome as a model, DJ Cohen, JF Leckman, and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press, 1997. and, from a recently-published Yale study: "On average, the most severe period of tic severity occurred at 10.0 years of age. In eight cases (22%), the frequency and forcefulness of the tics reached a severe level during the worst-ever period such that functioning in school was impossible or in serious jeopardy. In almost every case this period was followed by a steady decline in tic severity. By 18 years of age nearly half of the cohort was virtually tic-free. The onset of puberty was not associated with either the timing or severity of tics. ... By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted. ... In our experience, families find comfort in the realization that tic severity will likely decline through adolescence. Such knowledge is likely to help families and pediatricians live with the tics and to delay the decision to begin psychotropic medications. Ages 8 through 12 are likely to be critical. If medications can be avoided through this period, the patient may have a good chance of never needing them. Although anti-tic medications are available, none are ideal. Over the longer term, starting medications may do more harm than good, given their potential adverse effects and the difficulties associated with medication withdrawal. This is particularly true of the standard neuroleptic agents such as haloperidol and pimozide." Course of tic severity in Tourette syndrome: The first two decades, James F Leckman; Heping Zhang; Amy Vitale; Fatima Lahnin; Et al, 07/01/98, Pediatrics, Page 14, Copyright UMI Company 1998. Copyright American Academy of Pediatrics Jul 1998. Are there psychosocial and environmental components to the expression of the neurobiological condition of Tourette Syndrome? Often based upon a multigenerational, genetic predisposition, the multifaceted symptoms of Tourette's syndrome unfold during the first years of life as an interaction between biological vulnerability and adverse environmental events. Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998, p. vii.

Does he have the 'north american red ear'? I learned way back that high doses of B6 can cause a salicylate sensitivity. The Bontech actually caused my son to develop one. Now he is on a much lower dose of B6 for maintenance and he eats that stuff w/o problems. My little guy still gets the red ears. Almond milk is the worst for him. You know, I'm not familiar with metametrix, but I was privileged to talk with Doug Kaufmann of Know the Cause and he told me that he was one of the original designers of the IgG food allergy test. He claimed that those tests are flawed as the body is reacting to the mycotoxins in the food and not the food itself. So if the samples were not full of mycotoxins that might explain why all results done together were similar. That would also explain why the same person would get a totally different result six months later. All the foods my son tested positive for were fungal foods. He tested positive for 17. I shared this info with Doug and he and I agreed that my son was probably reacting to the mycotoxins and not the foods. I give 25 mg of NAC and he weighs about 45 lbs. No prob. I need to pay it forward. So many people have helped me along the way. I am eternally grateful to all of them. DS came home from school and his ears were like fire engines......so you might be thinking too much B6 So i again to look at his panel from Metametrix.....His Leucine levels are marked"H....X" high in danger zone i guess. So i went to the web to see results for high Leucine and 2 of the sites on the first page refer to Pellegra Pellegra as you mentioned has to do with corn in the diet an mal-absorbtion..... This paper says to counter act Pellegra you need more B6.....shoot me.... Or just add Niacin(B3) http://www.ajcn.org/cgi/reprint/31/5/819.pdf and its all about the liver and kidneys which keeps coming up Bun/creo way off when tested at 5 and his last test at 9 ??? Do you think Dr K would catch something like that? No matter what i look into it seems as though the counter action is something that we should probably be avoiding And part of me is annoyed because if it is all about corn, i wish i did that sooner.and it is probably going to be harder than the GF/CF But how lovely it would be to say I have the answer....i guess that is why i hesitate...because to do this is gonna sksd!! He also has a low Vanilmandelate, Homovanillate..which indicates a need for Tyrosine....but i'm scared to try this per the many conversatoins on this board.. ANY thoughts Caryn, Chemar, anyone I would also like to know how many people know or are guessing Corn is the issue besides Caryn, Chemar, Laurena82 And if its not the answer i will probably be more depressed, if that is possible. I know except for a few, none of us are doctors, but i have no one here and i need to find someone who knows what they are doing and isn't just out to make money

Hi Caryin, your in box is full. so here goes When you use Nac...is it all the time, or do you go off and on? Is it just for ocd or does it help with tics too? Does it help with allergies? It helps with glutathione right? And it helps detox right? And/or what is your theory on NAC? What about NAG as i've seen on the pandas board ..any knowledge on that> i now i need to bumpp up vitamin C 3xs.....but just curious.......i think my boy has a saliclate problem... Is there a test for that? on Metametrix testing my boy did not come up allerigice to anything????? Others who had it drawn roughly the same time also and negateives results, as i eased dropped on ther conversatons while attending brain balance...but some did showed a couple of reactions.....could it be bad testing? they say they check the test at the same time as they are testing the blood for consistancy. And what dosage do you give your boy and how much does he weigh? my guy is 75lbs. I’m sorry if all of this is elseware. …my brain is fried and it gets so hard to keep this straight, even though I try to save stuff. thanks so much

ok ...my son was using Fluticasone Propionate because of bad allergies prior to onset What side effects may occur? Return to top Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking fluticasone. Side effects may include: Abdominal pain, aches and pains, agitation, aggression, anaphylactic reaction, back problems, bad taste in mouth, brittle bones, bronchitis, bruising, cataracts, congestion, cough, depression, diarrhea, dizziness, dry mouth, dry nose, eye problems, facial changes, fever, flu, headache, hives, hoarseness, indigestion, itching, loss of speech, mouth infection or swelling, nasal congestion, nasal irritation or burning, nasal sores, nausea, nosebleeds, rash, respiratory tract infection, runny nose, shortness of breath, sinus problems, sneezing, sore or irritated throat, stunted growth, swelling of the face and tongue, vomiting, weight gain, wheezing, worsening of asthma WTF i'm sorry....and what about the stuff they don't know???

You Are Not Alone!!!! And this board helps me too!!!!

The hard part is the lack of control over your own body!!! That's the scary part that i try to empathise with and scared me! It is terrible!.....BUT, as your husband says, and maybe he is the sound of reason that i need to listen to also (and its hard when you are in the depths of it) "it will all work out"...maybe he can call me ,and beat that into my head too, because he is probably right(right?). But it would be better if you could work as a team and make this part of your boys life as easy as possible. Maybe its something in that limited diet that he has developed an allergy too......one of the theories is we over bombard our bodies with the same foods 1-6 times a day and something you weren't allergic to before your body can no longer tolerate....

I am interested in anyone's response as well.... Will dr K look into this if am having a phone consult in 2weeks? Should i just wait for him or should go for one of these tests. We have also lived in PA for several years and i have found tics on him.. I think deer are the state animal!!!!

Newbie,...this could be allergies just bugging his eyes and nose? Is it tic like that makes you think that? Some tics can look like normal motions but i would ask him if his eys itch or burn or feel like there is something in them. And at minimum you can get a wash cloth with cold or warm water and see if that makes him feel better.

I'm in Alpharetta,,,,where are you again? No i have not found anyone to work with. I am still exploring many avenues. Have you found anyone?

And how strict are you on this....is it just the main fruits or are you eliminating apples and almonds and any additives/chemicals that have saliciylates?

Mar, I am so happy for you!!!!! If you don't mind me (re)asking... what are you elminating again......just salicylates? And did you say that that did NOT show up on his tests? your boys tics sound the same as mine. Thanks ,,,,,and again HORRAY

Like I said, I think I"m just going round in circles, yes, no ... wait red,... i mean dog....... I'm haveing deja vu....too much of the circling, the hamster in my brain won't get off the wheel. I guess now i'll have to go look at this cute guy from american idol on youtube and go read that article cute guy123 sent. csp, thanks so much for sharing

I am glad we are all having this health discussion!!!! I think we all needed this cleansing of the psychological stress that goes with it. All the inner thoughts that we sharing is exactly what i am feeling. Chemar, I definitely see it does runs in families, but i hope and pray it doesn't have too. Why does it skip a generation, why does an uncle have it but not the parents? why does no one have it and then just this one person? Why does it go away for some? Why does it go away and come back? Why does it get better and worse(wax wane)? If someone went to a doc and said this rash only happes on tuesdays they would say...well what do you do, eat, go etc on monday or tuesday? If this only happens when i eat pizza they would look at what is in pizza? I just keep thinking something else is going on since it goes up and down, goes away and comes back I know that part we agree on, I guess i 'm going in circles..... I guess i'm saying that ts or ocd describes the outward sympton of some underlying issue for all here, unless there is that (downs type)gene These kids don't come out of the womb ticcing.....they get their first illnesses 2-3 years old or a weird strian of something some years later. It can be triggered and untriggered IT SEEMS. It seems more of a susseptablity issue????(my spelling is horrible) And again i am not argueing as much as i'm not buying it...the doc in germany found this correlation(agian I haven't read it yet) but is that THE gene..I thought i read something about several other studies that correlated a group of different genes.(several of them) At first i didnt' want it to be GENEtic, but I almost pray for a gene so my kids can spin the vile and guarntee their kids would be ok. And i may be wrong and living in denial. And Chemar i don't ever want to make you mad, because you might take the ball and just go home you are too valuable Peace to all

"Researchers studying Tourette's syndrome in Germany compared 98 patients with 178 healthy controls. They found an association between the syndrome and the SNP rs4565946 in the gene TPH2. People with two copies of the C version of the SNP had over two times the odds of having Tourette's syndrome compared to those with one C or none." Source: https://www.23andme.com/health/Tourettes-Syndrome/ I kind of agree with what I think you're saying. People don't want to see it. It's why I take medication for mine. It makes life easier and makes dealing with other people easier. Even if they accept it, you're still "that guy with the tic" so you're instantly put in another class from everyone else. People do this unconsciously... even the most open-minded, accepting people in the world still do it subconsciously. It's a survival trait that is implanted in our brains, much like how stereotyping and prejudging are actually survival traits from back in the day when cavemen were trying to not be eaten by wild animals or killed by rival cavemen. The thing is, no one wants to admit that because it's not PC to do so. It's like when people say "oh, no way, I'm not prejudice!" Well, actually, yes you are, unless your brain is malfunctioning. But anyway, if this guy does well on American Idol, he doesn't seem to be embarrassed or care much about his tic, so maybe it will shed some public light on tics and raise awareness so that people don't just consider TS to be "that disease where you swear really loudly." Public awareness may lead to some sort of research and cure. For example, all the girls fall in love with this guy (as they usually do for the "cute" guy on American Idol) and then they all feel bad for him cuz he's got TS so the gears of the media get into motion cuz "hey, let's cure this guy!" and then some new non-neuroleptic drug gets developed that permanently suppresses tics for life with no side effects! Or not.<<<<<<<<<DELETE I like how you think zans the last 2 words. Ok it's weird how i put "rs" in my made up gene.... I haven't read the link, can we get tested? So is it an odds thing? cause 2'x more likely out of 1000 people isn't bad. and if runs in families then it should be in that group, right, and thats where the cluster of these genes should lay.. ..where it said more likely.......does that mean there were people who had both that didn't express it....? ......so it's not a gene like downs where if you have it you express it? .....so you are more predisposed?

Right....did they question that.... You should send that statement to them...we all should send it...if you can find the address i'll do it.

this is just my thoughts on that.... for some people, the tics are minor and alot of people are oblivious-as i have mentioned and don't notice what are obvious tics to me. And that is why I say that all Ts is trggered by some illness just that most people wouldn't note the correlation between the illness and the onset.(THe doc's don't know what causes it, i know its considered genetic for some but geneticcally predisposed maybe....you need the trigger....that is what i'm saying, since the doc's wont)( i think everyone here is pandas/pitands that includes celicas and any trigger) So then its not your brain, and its your immune system and takes it out of there is something wrong with your brain in that sense, and that lifts the stigma. Now, people will go..."oh you have TS" and just because they will now notice you have something going on (which they may not have noticed before) doesn't mean they'll accept it, now you've got something that science doesn't understands or can fix! Now, is that something as an individual i want to associate with or get invovled with or marry and have kids with if no one can FIX IT! I know it's said to be genetic, but the earth was flat, and up until this year, they thought the universe was contracting but now realize it's still expanding.(put that money into ts and other realated reseach) Chemar i know you tried to show me it can be genetic but i must not be smart enough to see it, i want to see its gene # pi52rs.....i want something like a gene they show for downs or other things that have a specific gene......then i'll buy it, then ill have everyone genecticallly tested so my kids wont have to go through this with their kids, then they can spin the vile so this can stop, Anyway, that is why we are all here....because except for the few, and those who have found an answerr outside the box, The "doctors" don't know!!!! and it can be debilitating and very socially ostrizing This is not faith's reply, just my feeling of wanting to slip under the radar. Now if there is something about yourself that you can hide or fix, your life is much easier. I'll tell you,,,,a couple of days ago i was trying to play a game with my boy and he was just adjusting everything....i had to stop because i couldn't take the distraction...i can't imagine how he feels, or how someone can be aournd him when he is at his peek(and i love him)......sooooo distracting....so when his tics go away, i feel like if he can find a good woman, that they should not have kids.....and even though there are not word for the love i have for my kids....if i had known that it is genetic and he would have to go through this,i wouldn't have had kids.....i guess because i do love them so much Ps...2 other shows...one based in Miami one of the guys had a tic and they would cut away, and on the last dancing with the stars...the blonde star dancer, well her fiance had a tic, i noticed they cut away on him too.....its too much for the human senses....people want to be happy and not see others afflictions Sorry to if i upset anyone.

Sounds soooo similar to our situation. We still have tonsils though...i heard that taking them out doesn't necessarily change anything Gosh....good luck...i hope you find your answer. At least you can find people in your area who acknowlegde pandas/pitands. On a side note.....there has been mention of particular strains of strep..... are we talking a vs b or a strain of one or the other that is more resistant? Last night as the hamster in the spinning wheel in my brain was going.... i put together that a young girl across the street from us, she is 10-11 years older than my boy started pullng her eyebrows out about the same time as my boys would get strep tics.(she was 13-14 my boy 3ish)...unfortunately she still does that.... i am going to call her parents today to see if she had /was getting strep around that time

Sorry you are and your son are going through this! We are not on meds but if i were to start i would only 1 at a time and see what results i got form that...my the clonazepem will help with both. The biggest problem i see with meds is that alot of docs will prescibe several and that just seems crazier to me than all of the natural voodoo we are trying here. But i guess they are docs so that's ok ...there was a show on pbs on how kids with all these disorders end up on 8 medicines on another note has you child had an illness w/i the last several months... i far from as knowledgeable as most here so hopefully others can help you.

Hi Micheal, i forget abou that stuff ie arches spine , i think about it then i forget ...so loaded at looking at the other stuff..... my boy does have spinal posture issues and constant neck spasm.... do you have phone number, like to find someone in GA (To all....I don't mean to make it sound like my son a wheezing, malnutritioned, invalid He runs and plays and is such an interesting, tall and handsome kid.....but all of these littling things for some mean nothing and for others its quite taxing....allergies, neck spasms, strep,strep again, again and again, teeth, and more teeth, salicilaytes, head injuries)

If you can get ahold of Doxie she is having great success. But they are pretty busy being happy, so i'm don't think she even comes to the board anymore. I'm going to dr G....and i've had a consult with drS Both are charming guys who really do care. But...i think it is still a bit of a hit and miss especially as the kid keeps growing and until the techniques is perfected. till the can get machines to say you need it 1/2 of mm to the right or up or down..Doxie's boy is i think 15 going on 16. i'm gonna correct myself again...there was a mom i talked to and so has doxie, her boy was9-10 and things were medium to bad, things aren't gone, gone but not noticable to anyone but her and her son. S0 YAEH for the them. Doxie and i see dr G and i think the other lady goes to dr Sims( on the machines note did anyone see how atheletes are getting very similar mouth pieces, for their tmj, to improve their performance...so interesting!!!!!!!! we just had new pieces made and adjusted 1/21 and we are waiting...thinngs are actually ok right now... my boy has a history of teeth issues, but i also know he has allergy issues and pretty sure salicylates(maybe yeast) are an issue and i am following pandas as well,,,,,before this occurance my ds would completely remit after 3-4 weeks on antibiotis....last run i had 5 months with nothing...but he hasn't seemd to have strep(that i cuold find in about 2 years) though he is ALWAYS sick when the tics start , even this time. Now my boy does seem to ramp up 2-3 days after an adjustment........so if it effects it in a bad way, that means its effecting it....so that would mean to me, that we need to find the adjustment that bringns it down...Doxie said her boy seemd worse the 1st week after if i'm right. Oh and it's only like the videos for some...all the docs say it takes a few weeks for all the nerves to settle down. Hope that helps...you can call and actually speak to the doctors or email them...they are pretty open

just thought i'd post this if anyone was interested. http://www.time.com/time/health/article/0,...51968-1,00.html

just thought i'd post this if anyone was interested. http://www.time.com/time/health/article/0,...51968-1,00.html