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BikeWP

Tics and restless leg syndrome?

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technodad...just another word of caution..... STEROIDS are a big trigger for Tourette Tics as they have a dopaminergic effect so until you are certain that your child does not have TS, be very very careful about steroids! They do help with PANDAS, but are bad for TS

 

Honestly, while this neuro may know a little about PANDAS, you would be well served to ask on our PANDAS forum as to whether there is an actual PANDAS specialist in your area http://www.latitudes...hp?showforum=17

 

I am sure there are many great neurologists who are on the ball about all these things....but I have yet to meet one. The ones we have experienced are "old school" in their knowledge and approach and were only willing to treat TS with those awful meds with multiple side effects and considered all else "quackery'............hopefully your neuro is different but just be cautious and don't just accept everything they say as fact IMHO

Chemar-

Thanks so much for all of your help. I agree, with the experience we have had with a Neurologist, they do not know a heck of a lot about PANDAS or even tic disorder for that matter. We went to see a Neurologist a few years back and they didn't mention anything about PANDAS. He said my son had tics...and that was about as far as we got with the Neurologist visit. Complete waste of time.

I have researched PANDAS in the Colorado area and found a doctor currently on the medical advisory board of the PANDAS resource network. I have made an appointment with him. He is a homeopathic doctor that specializes in PANDAS. I am looking forward to meeting him.

Thanks again. I so appreciate latitudes.org, I really do from the bottom of my heart. Thanks everyone for help. It feels a lot better knowing we are not alone...

Hi Chemar

My sons tests came back and was diagnosed with PANDAS! Thank you big time for all of your help on this. Starting his antibiotics/steroids today. Food and seasonal allergies were very high along with his strep test. I don't think I would have gone down the PANDAS path if it wash't for you and another helpful woman who replied. Thanks so much...

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our dd8 was diagnosed with PANDAS and she has RLS. When she is on abx and her PANDAS symptoms all but disappear, RLS disappears too.

How is your son doing on abx?

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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

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Hi Kevin

no it is not just anecdotal about steroids increasing dopamine, and not only have we been told that by numerous healthcare professionals, but if you enter the term steroids increase dopamine in a Google search, you will find numerous research papers on the subject, including from NIMH

 

Additionally....the anecdotal evidence itself is pretty clear on the subject, including our own personal experience, for what it is worth.................

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The "anecdotal" data and information that I have learned over the past two + yrs. on this board has suprassed in usefulness and effectiveness the traditional data and information that I have received from pediatricians, neurologists, etc., and BY FAR. So much so that I do not lend much credence to our tradtional drs. for much of anything anymore beyond getting antibiotics when we need them. Cynical? Very much so!

 

The information on this forum has also helped us in some areas that our non-traditional drs. have not.

 

So I'm a big fan of "anecdotal."

 

- Chris

 

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

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Hi Laura I just saw this post as I am usually on the pandas forum, but I am so glad you checked into a Pandas diagnosis and I feel you on on the right path. Hope your child is seeing some improvement and I am so happy to spread awareness of this diagnosis.

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Hi Kevin

no it is not just anecdotal about steroids increasing dopamine, and not only have we been told that by numerous healthcare professionals, but if you enter the term steroids increase dopamine in a Google search, you will find numerous research papers on the subject, including from NIMH

 

Additionally....the anecdotal evidence itself is pretty clear on the subject, including our own personal experience, for what it is worth.................

 

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

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As I mentioned before, our experienced physicians (both neurological and GI specialists) told us to avoid ALL steroids Kevin, because they are dopaminergic and so have the potential to increase tics. Period. I am not talking about puberty or androgens here. Just steroids, dopamine and tics.

 

Truth be told, if we had followed the "scientific" and "official" stuff...my son would have been in a far worse place! It was coming here, finding tons of very relevant "anecdotal" evidence and thankfully having physicians who think outside the textbook that gave my son his life back.

 

As someone with a Physiology background, and years of medical research experience, I can tell you honestly that I know how skewed "scientific" can be. Give me "anecdotal" any day as those are people living with the illness and relating directly what they experience.

 

 

If you are only looking for "scientific" and "conventional" info...then this may not be the right forum for you as the focus here is on alternative/complimentary treatments and anecdotal reports rank high!

 

wishing you all the best as you seek answers for your child

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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

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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".

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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

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Kevin...just as an FYI there are studies that do suggest androgens may be associated with increased TS tics...again just Google androgens and tourette tics. And again, this was something our reputable physicians discussed with us, as part of the discussion on why so many more males than females manifest TS and also why the pre- and pubertal years seem to be associated with a higher incidence of tics, and also why it seems the tics subside when those "hormonal years" are over

 

As with everything related to TS, there is much that is still not really known "scientifically" and the research of some shows one thing while that of others shows another. Many variables and methods that often "muddy the water"...again why actual experience seems a very valuable parameter...yet also with the understanding that we stress here all the time...different people have different experiences and about the only thing we can all agree on is that people with TS tic!

 

When we discuss things here, none of us is claiming to know everything....... nor to be an "expert"....so as you read here, you would be best served to see all commentary as anecdotal discussion based on what we have experienced or learned over the years. We are just patients and parents discussing things with each other. That is the purpose of this forum.

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Kevin...just as an FYI there are studies that do suggest androgens may be associated with increased TS tics...again just Google androgens and tourette tics. And again, this was something our reputable physicians discussed with us, as part of the discussion on why so many more males than females manifest TS and also why the pre- and pubertal years seem to be associated with a higher incidence of tics, and also why it seems the tics subside when those "hormonal years" are over

 

As with everything related to TS, there is much that is still not really known "scientifically" and the research of some shows one thing while that of others shows another. Many variables and methods that often "muddy the water"...again why actual experience seems a very valuable parameter...yet also with the understanding that we stress here all the time...different people have different experiences and about the only thing we can all agree on is that people with TS tic!

 

When we discuss things here, none of us is claiming to know everything....... nor to be an "expert"....so as you read here, you would be best served to see all commentary as anecdotal discussion based on what we have experienced or learned over the years. We are just patients and parents discussing things with each other. That is the purpose of this forum.

 

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

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Kevin, I am really not wanting to go back and forth as you are fully entitled to your view, as I am to mine.....but did you happen to notice that some of the studies related to androgens possibly increasing tics are by some of the same authors you have quoted? So even there, results and hypotheses vary over time.

 

Remember too that my son was first diagnosed 13 years ago, so yes, much has changed since we started this journey....but I can only state again that if I were to have accepted everything that some of the doctors and "scientific" researchers have claimed over the years, rather than also investigate much of the anecdotal info documented by patients and caregivers, I would never have been able to help my son the way I have. The number of times I was told by physicians that there was no such thing as "triggers" for TS tics, and that diet/nutrition made no difference to tics, and that food and environmental allergies had not effect on tics etc etc etc..........and all cited the lack of so-called "scientific" evidence.....

 

Also as I have said over and over, I am not an expert or professional, and post only from what my experience or gleaned info is, and I also try to never make emphatic statements, but usually add may, perhaps, imo, imho etc.

 

We tend to chat here and try not to get upset with each other, realizing that we are all just trying to learn, share and support one another. So even if we disagree, it is not a personal thing...just people expressing their opinions and sharing their experiences.Your response response to me and to Chris seemed to suggest some level of upset? No-one "shunned or mocked" you? at least that I can see?? So I do hope you understand that no one is trying to negate your opinions by posting about their own.

 

Anyway, of course your opinions are as welcome here as any others. I would just suggest that perhaps, as this is now taking this topic (about tics and restless leg syndrome) a bit off course, maybe start a new thread on any topics you would like to discuss :)

 

I do also need to ask if you would mind editing those quotes above that you posted in their entirety in case that is copyright violation and so the authors/publications may get upset at them being posted here that way, including without any quote tags. Usually, the best way to refer to an article or quote from another website, and not risk infringing their copyright is to give the title, authors and place of publication and then just either a snip or the abstract in quote tags...then the link so others can read further. You can usually see if something has copyright by looking at the bottom of the page...if it says anything like "All Rights Reserved" or © or Copyright etc then one has to be very careful

Edited by Chemar
word errors

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