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kcjstaine

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  1. I recognize the purpose of the forum and it is a good one. Here's a question for the forum then? Since discussion is valuable. - Why is it that testeosterone levels reach a PEAK in males between the ages of 20-30 yet TS symptomology is 10x more prevalent in children than adults? The connection between the two is conjecture, hypotheses and speculation at best. Sorry, but it is. And the vast majority of the research backs that point up. The following passage is from another site. The woman who put it together is also not a fan of traditional medicine to treat TS. She augments her site and comments however with cited research studies, not just commentary from our own "case-studies". It's worth a read if you havent seen it before. "Each person with TS will be different, but there is strength in numbers. As long as those with "milder" Tourette's, or those who have overcome obstacles associated with TS+, are chased away by scare mongering and inaccurate statements at conferences, support groups or in literature, we all pay the price of that lost strength. Awareness of the FULL spectrum, including the silent majority, will benefit us all. Warning newcomers that Tourette's will get worse doesn’t take into account that, today, Tourette Syndrome may be at its worst at the time it comes to diagnostic attention and understanding may be all that is needed. Claims that Tourette's worsens during puberty or over time are not backed by research and may only reflect the fact that those persons who have more difficulties are more likely to speak up and attend support groups, while the rest quietly disappear. Studies indicate that tic severity is not correlated with the onset of puberty, and that most tics remit or decrease in the majority of children as they go through adolescence. Further, studies show that AD/HD accounts for most of the impairment in those individuals who have both conditions (see several studies cited on the TS Links page). The simple fact is that most children outgrow tics as they pass through adolescence, and that tics alone are not a highly impairing condition. Recent findings show that there is every reason to expect an optimistic prognosis and hope for persons with Tourette's syndrome. By early adulthood, tic severity may have declined sufficiently that a TS diagnosis may no longer be warranted. Course of Tic Severity in Tourette Syndrome: The First Two Decades. James F. Leckman, MD; Heping Zhang, PhD; Amy Vitale, BA; Fatima Lahnin, BA; Kimberly Lynch, MSN; Colin Bondi, MA; Young-Shin Kim, MD; and Bradley S. Peterson, MD Pediatrics. 1998 Jul;102(1 Pt 1):14-9. Tourette syndrome is a developmental neuropsychiatric disorder with a long-term course that is favorable for most patients. Long-term follow-up of an epidemiologically defined cohort of patients with Tourette syndrome. J Child Neurol 2001 Jun;16(6):431-7. Burd L, Kerbeshian PJ, Barth A, Klug MG, Avery PK, Benz B. Department of Neuroscience, University of North Dakota School of Medicine and Health Sciences, Grand Forks, USA. For TS, it seems that a minority of persons have all tics disappear for a prolonged period, but for many more they diminish to the point where they're not important and not noticed. Roger D. Freeman, M.D., Clinical Head of Neuropsychiatry Clinic at the BC Children's Hospital, Vancouver www.tourette-confusion.blogspot.com/ In our experience for a majority of patients, the period of worst tic severity usually falls between the ages of 7 and 13 years, following which there is a steady decline in tic severity consistent with available epidemiological data that indicate a lower prevalence of Tourette’s syndrome among adults compared to children. It is also typical of the findings reported in follow-up studies of clinically referred Tourette’s syndrome patients. In many instances, the phonic symptoms become increasingly rare or may disappear altogether and the motor tics may be reduced in number and frequency. In adulthood, a patient’s repertoire of tics usually diminishes in size and becomes predictable during periods of fatigue and heightened emotionality. Complete remission of both motor and phonic symptoms has also been reported, but estimates vary considerably, with some studies reporting rates of remission as high as 50%. In such cases, the legacy of Tourette’s syndrome in adult life is most closely associated with what it meant to have severe tics as a child. For example, individuals who were misunderstood and punished at home and at school for their tics or who were teased mercilessly by peers and stigmatized by their communities will fare worse than a child whose interpersonal environment was more understanding and supportive. Tourette's Syndrome : Tics, Obsessions, Compulsions : Developmental Psychopathology and Clinical Care, by James F. Leckman, Donald J. Cohen, John Wiley & Sons; November 1998, p. 37 In the past, persons with Tourette Syndrome may not have come to clinical attention unless functioning was impaired by significant environmental or psychosocial factors or other diagnoses. Today, less complicated cases are more likely to be detected. But, the gains afforded our generation of children by early diagnosis will be lost if parents accept bad and manipulative behavior in the name of Tourette's, throwing up their hands and excusing or accepting a wide range of issues and behaviors as if they were an intrinsic part of the condition. Many persons with TS or TS+ have overcome significant obstacles, without the benefit of diagnosis, and gone on to live productive and successful lives. Parents have only a few years to influence the positive development of their children in a safe, nurturing, accepting environment. All too often, we hear of parents wanting to medicate away the smallest of tics, oblivious to the unaccepting message that sends their child." The studies alluded to about androgens and TS are connected are speculation, hypotheses, and shows how perplexing this condition still is. But lets not cloud an already muddled situation with more opaque water. K
  2. And i wish yo the same for your son and to all those on this site. I do believe the tradition scientific data about kids with TS, in that the vast majority, just like your son, will see their symptomology reduce greatly as they age. So yes, my son is, and will be fine. Thanks for the warm welcome and I wish evryone a happy, healthy and productive 2013. Kevin
  3. Chemar, I am not looking for the scientific or the traditional. My son is on no traditional meds - has never been - he's on L-carnitine for vocals, Vit B, Mg++ ...etc). And I have no doubt that steroid based big pharma drugs are bad...for just about everybody and everything. They are bad for a whole host of reasons My question/statement wasn't that steroid drugs are bad for people but your statement that - "Genetic TS can also "switch on" suddenly too (especially at pre or puberty in boys when the surge of androgens result in increased dopamine), as can any other trigger result in sudden tics eg exposure to an allergen, pesticide, mould etc etc etc etc etc".
  4. Chris, I'm not discounting anyone's own experience. And yes I agree....my doctors have been essentially useless. But there is a difference between what my doctors say and what scientific studies say (which have no agenda...they are not linked to pushing big pharma...at least not the tic survey studies aren't). They are simply studies conducted by reputable entities who see thousands of patients over many years. I also agree that this forum is a wealth of non-traditional information but that doesn't mean opposing views should be shunned or mocked. The idea that puberty and increased tics are linked is simply not verified by any peer-reviewed paper/study. And to say otherwise is a disservice to anyone, newbie or otherwise that is looking for some insight to their son or daughter's condition. Kevin
  5. Hi Chemar, Not discounting anyone's personal anectdotal experiences or doctor/healthcare professional's anectdotal observations, but the peer-reviewed research from places like the Yale Tourette Center and other's shows no significant correlation between a person's highest tic level's and puberty. Most kids, according to all of the pertinent studies show that kid peak early in their first decade (10-12) and start declining slowly but steadily after that. The notion that puberty increases tics is not correct, at least not scientifically. I realize that may not mean much to someone whose child is 14 and exploding with symptoms but it still should be mentioned along with anectdotal comments....to be fair to those reading these threads. Thanks Kevin
  6. Hi Chemar, Just curious about your statement that the androgens pump up dopamine levels....which by inference or implication....that tics increase during puberty. There is no scientific/peer-reviewed data that supports that idea. Curious if that contention is anectdotal or I may have missed a study. Not being argumentative by the way, just curious. Thanks - Kevin
  7. I have been on the site only once before as a poster. About 2 years ago. My son dx TS 3 years ago. There is sooo much literature out there to sift through and stories to read about. I'm curious how many of you have seen TS proceed in the way most of the medical sites say it should (fully recognizing that this is very much a case-by-case condition). But most of the peer-reviewed studies say that the time of highest symptomology is between ages 8-12 or 9-13. Followed by a reduction in intensity as adolescence continues. For those of you who have travelled through this time period with your children - can your verify this statement/contention? With those who have older children....mid to late teens - what have you observed? The data says that about half of all TS patients are essentially tic free by 18 and another 25-35% are substantially reduced by that age as weel. I am hopeful that my son, as well as the vast majority of children will "grow out of" the days of high symptomology. It's just nice sometimes to get reinforcement of that hope by those who have travelled that road already. Any and all responses are appreciated
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