New to the world of tics

[Ryan]

Hello,

I have been lurking around these forums for about a week now and have been a little shy to join and post, well here I am now and I'd like to find out as much information as I can. I recently ordered the Tic and Tourette's book and have read over half of it in about a 24-hour period.

 

A little history:

I've been with my boyfriend for three years now, I've noticed but not paid too much mind to his tics, but recently its become something I've been greatly interested in. My mother mentioned that I should do research because of the chance of passing tics on to our children, so that's what brought me here and to a few other sites online to do research. I'm honestly not remembering at the moment, but I read on one of the sites that there is a 99% chance if he does indeed have Tourette's that he will pass it on to children. Is there anyone knows if this is indeed true? or perhaps knows statistics to the contrary?

 

Jason (my boyfriend) has a chronic tic in his right arm that is very apparent when he's playing video games or when he's on his computer, but I do not feel that these things are his triggers, but I'm not ruling them out yet. Right now he has 2 tics that wander, currently residing in his nose in the form of sniffles and in his stomach which he says is a very very odd feeling. He does grunt, but more commonly, talks in his sleep. His tics are very mild in comparison to what I've been reading in my book, however, I'd like to see if it is indeed something I can help lessen or even eliminate using the worksheets and trying to find his triggers.

 

Jason is 21, his ticcing started about the age of 10. He and his mother do not believe that he was diagnosed with full blown Tourette's, however, I would really like to get him to a doctor to see if it is indeed Tourette's or if it is something else causing his tics. He will be moving here to Colorado to be much closer to me by the end of the month. I've talked to a friend's Chiropractor who told me to give him a call once he is insured because he knows a few doctors that would be good to see for his condition, but if there is anyone in the state who has any recommendations, I would be more than happy to hear of them.

 

I've only recently taken the time to learn about TS and ticcing in general. If there are any websites or books that anyone could recommend for me to read or check out, please, they'd be very well appreciated. Also, any tips on finding triggers or to help us out would be most appreciated.

[Chemar]

Hi Ryan and a big welcome to you

 

how very special that you care so deeply as to want to understand and help your boyfrined this way

 

re the genetic factor in TS

here is some info from an excellent website on TS...Tourette Syndrome Plus

 

Tourette's Syndrome (TS) appears to be familial (i.e., it "runs" in families) in the vast majority of cases, suggesting a genetic component or an inherited vulnerability to it, but our understanding of the mode of genetic transmission is incomplete and controversial. At the present time, it appears that there is likely to be a significant genetic factor, although prenatal, perinatal, autoimmune, and environmental factors can affect or modulate the severity of symptoms. Recent research by Abelson et al. (2005) reviews some of the genetic research and identified a new candidate gene, SLITRK1.

 

Gender is also linked to expression of TS: boys are significantly more likely to develop TS than are girls. One question adults often ask when they are thinking of starting a family is whether there are any tests such as amniocentesis that can screen or test a fetus for Tourette's Syndrome. The answer is "not at this time."

 

In some of the seminal research on this topic, Pauls et al. (1986) reported that male offspring would have almost a 50% chance of having symptoms of TS, and a .99 (almost certain) probability of having either TS, a chronic motor tic disorder, or Obsessive-Compulsive Disorder. Female offspring had lower probabilities of showing symptoms of these disorders, but there was still a fairly high probability (.70) that a female child would have one of these disorders.

 

In more recent research, however, McMahon, Carter, Fredine, and Pauls (2003) approached the problem somewhat differently by looking at the onset of TS in children whose parents have TS and comparing that to the onset of TS in children whose parents do not have TS. Children who were considered "at-risk" and control children were enrolled between the ages of 3 and 6 years and followed with yearly structured assessments over intervals of 2-5 years. Of the 34 at-risk children who were tic-free at baseline, 10 (29%) subsequently developed a tic disorder; 3 of those 10 met criteria for TS. None of the 13 control children developed a tic disorder, supporting the hypothesis of a significant genetic or familial contribution to the onset of tics.

 

from http://www.tourettesyndrome.net/tourette_p...39;s%20Syndrome

 

that website http://www.tourettesyndrome.net is one of the most comprehensive on TS, tho somewhat lacking in up to date info on alternative methods...which we have here on Latitudes/ACN at http://www.latitudes.org

 

There is an excellent article on Tic Triggers here too

http://www.latitudes.org/articles/finding_triggers.htm

 

I am so glad that you have Sheila's book as it is by far the most comprehensive work to date on alternative treatments for tics and tourette's and soooo needed, as sadly the side effects that come with the medications frequently make them intolerable

 

all the best to you and your boyfriend, and do keep reading through the threads here and asking questions as you go along....we are here to offer support and to share our experience and knowledge wherever possible

[Ryan]

Hi Ryan and a big welcome to you

 

how very special that you care so deeply as to want to understand and help your boyfriend this way

I think if anyone is to have a significant other with such, they should at least attempt to learn and understand what they are going through. If I'm going to be exposed to it and sometimes even be awoken at night due to it, I should have at least a small understanding. While it seems it's taken me a while to come to this and finally start getting the information, the end of this month he is moving to the same state, but he'll be in a different city due to where his job requires him to be.

 

I think the shock of seeing that one statistic is what truly slapped me into wanting to find out more and to see if there is anything I can do to help. I wanted to understand this, especially if there is a chance that the children I may bare in the future might indeed have it as well. I've read quite a few stories on here that I know would break my heart if my own children came to me with them and I didn't have at least a little time to prepare.

 

I printed out the page that you had linked as far as the genetics go, I appreciate it, I just don't have a lot of time to sit and read this morning. I will probably read it later on the plane. I also appreciate the other links, I will bookmark them and come back to them when I get home.

 

I am so glad that you have Sheila's book as it is by far the most comprehensive work to date on alternative treatments for tics and tourette's and soooo needed, as sadly the side effects that come with the medications frequently make them intolerable

 

all the best to you and your boyfriend, and do keep reading through the threads here and asking questions as you go along....we are here to offer support and to share our experience and knowledge wherever possible

I read so many great reviews for this book so I decided to see for myself, and there's such a great amount of knowledge there to be taken in. Even just the four listen medications that are in the book are scary. With as mild as his tics are, I would rather Jason live with them than take his chance on those medications.

 

He actually mentioned something about there being no RSS feed for this forum yesterday, he's interested in tracking this thread himself. I wouldn't be surprised if he too joins the boards soon.

 

I thank you for your helpful information

[Guest]

Welcome Ryan,

 

I'm 21 with Tourette's and am from Nebraska. I don't have any suggestions on a neurologist, etc. specifically for Tourette's in Colorado. I went to a few Colorado doctors several years ago, but didn't stay with them (unsatisfied). They were med doctors which I don't use anymore.

 

I would suggest checking out the Defeat Autism Now list of doctors posted at the top of the forum called Finding Medical Help. I was told that Dr. John Kucera had some good reviews. So he may be worth checking out along with the other Defeat Autism Now doctors in Colorado. Here's his link.

http://www.autismwebsite.com/ari-lists/us/...cera,_M.D..html

 

Please let me know if you two find a good alternative doctor in Colorado as if I ever move back to my hometown, I will probably doctor in Colorado as Misourri would be quite a ways to travel.

 

Carolyn

[Ryan]

Welcome Ryan,

 

I'm 21 with Tourette's and am from Nebraska. I don't have any suggestions on a neurologist, etc. specifically for Tourette's in Colorado. I went to a few Colorado doctors several years ago, but didn't stay with them (unsatisfied). They were med doctors which I don't use anymore.

 

I would suggest checking out the Defeat Autism Now list of doctors posted at the top of the forum called Finding Medical Help. I was told that Dr. John Kucera had some good reviews. So he may be worth checking out along with the other Defeat Autism Now doctors in Colorado. Here's his link.

http://www.autismwebsite.com/ari-lists/us/...cera,_M.D..html

 

Please let me know if you two find a good alternative doctor in Colorado as if I ever move back to my hometown, I will probably doctor in Colorado as Misourri would be quite a ways to travel.

 

Carolyn

Thank you

 

As I said, a friend's chiropractor is supposed to give me a list of doctors once I find out what insurance Jason will have, so I may be able to find at least one from there that will be good. I'll keep John Kucera's information and I will ask about him next time I see Dr Driscoll (friend's chiropractor). Thank you for that

 

I currently live in Colorado Springs, but Jason's moving to Parker which may make things a little easier since he'll be so close to Denver.

[Claire]

Hi Ryan,

 

It is critical to find the right doctor. The DAN list that Carolyn posted (originally recommended by Sheila Rogers, who wrote the book you are reading) have a very specific immunce testing protocols that

 

Does your boyfriend at least use an LCD monitor for his computer games, a small (15") screen and do it in a well lit room? It does tend to aggravate tics for many people.

 

If your boyfriend is only tracking this thread, then here are some links.

 

http://www.latitudes.org/forums/index.php?showtopic=1211

 

Re the genetic aspects, that can be confusing. It can be TS that is passed down, and/or the immune issues that tend to manifest

 

Virtually every parent of, or person with a tic syndrome visiting this board in the last 3 years I have been on it that have done many of these immune tests..and there are a LOT of them...have uncovered some issues. Some haven't done testing, but done things like eliminate artificial additives and found improvement.

 

Carolyn is an incredible example because we found countless times that we could help reduce our kids tics, but she was the first to show that an ADULT could use the same methods to reduce them.

 

Please note that it isn't the exact same program for everyone. It would be easier if it was. But again, a doctor who does immune testing for autistic kids would have some great background (similar immune issues, different neurological symptoms, and there is more attention to this in the medical community than tics). Furthermore, getting a faulty immune system to function more normally is a great thing for overall long term health. Often it is toxic metals interfering, for example.

 

I have to point out that my son hasn't tic'd in 3 years, and most here have seen dramatic improvement...WITHOUT meds.

 

Claire

[CureCodeConsultant]

Each and every individuals Tourettes/tics symptoms are unique to their biochemistry and lifestyle.

 

If he's had it since he was 10, you may want to ask if anyone else in his family had or has this. To determine how prevalent this "gene" if it is a gene in his case is.

 

The most obvious steps to take would be to:

 

1). Check his diet for: Sugars, fake processed foods, white flours, wheat, caffiene, alcohol, do these make him worse?

2). Check how many silver mercury amalgams he has in his teeth. These are nervous system irritants and over time cause neurological problems in many.

3). You say he tics more during video game play. Sounds like when he concentrates and looks at visual stimuli, it aggravates. How is the rest of his personality? Positive, fun, energetic? Or negative, reluctant, depressive, resistant?

 

Start with that, but basically you need to play a detective, like the Tics and Tourettes book correctly points out.

 

lemme know if you want to discuss further.

 

All the best,

 

Igor M.

Healing Counselor

[Claire]

Dear Code Consultant,

 

Could you please clarify something... Are you promoting consulting services here (based on your 'name' and the fact that you posted your email), or are you simply volunteering expertise?

 

Your insights are welcome, and forgive my cautiousness, but the rest of us here volunteer our time and experiences and for the regulars here, our guard goes up when we see someone new come in whose goal appears to be trying to get business.

 

I am asking the question outright to offer you the chance to correct what I admit is my initial perception...I apologize in advance if I have misunderstood. It just hurts the credibility of this site when a newcomer can't tell whether or not some of us have secondary objectives.

 

Claire

[patty]

Claire,

 

Well said! Thx for asking the questions regarding code consultant. I am also wondering the same thing.

 

Patty

[kim]

Hi Ryan and hopefully Jason,

 

Ryan, I think your Mom gave you some very good advice about doing some research, with future children in mind. There are many things that I would do differently, if I could do it over again.

 

From the article that Chemar posted:

 

onset of TS in children whose parents have TS and comparing that to the onset of TS in children whose parents do not have TS. Children who were considered "at-risk" and control children were enrolled between the ages of 3 and 6 years and followed with yearly structured assessments over intervals of 2-5 years. Of the 34 at-risk children who were tic-free at baseline, 10 (29%) subsequently developed a tic disorder; 3 of those 10 met criteria for

 

71% of the children in this small study did not develop any tics (in the time frame studied). Also, it says parents, does that imply that both parents were affected? If so, what would the study have shown with a single parent affected? What differences could be found in btwn the children that did and didn't develop tics, i.e., history of illness, diet, parents state of health, toxic burden of parents and infant/child, age and number of vaccines given..that last one is of huge personal interest to me, and something I would strongly encourage you to do some real research on, prior to becoming a Mom.

 

I found this article really interesting.

 

http://www.emedicine.com/NEURO/topic680.htm

 

near the bottom

 

POLYMORPHISM WITH AND WITHOUT DISEASE

 

Such innocent genetic changes were called polymorphisms.

 

The fact that the mutation leading to Wilson disease would be a harmless polymorphism on a planet with little or no copper was pointed out in the 1970s and 1980s

 

The relation between polymorphism and disease can be even more complex. In a number of instances, two or more things must go wrong for a disease to appear.

 

The incidence of adverse health issues with children has risen dramatically.

The number given to children affected by autism, is currently 1 in 166, with a higher number of males affected. This # does not include the kids that are diagnosed with ADHD, ADD, anxiety, depression, rage, etc. I recently read an article that said that approx 1:5 children with autism experience tics.

 

The incidence of diabetes is rising sharply also, including type II, which was almost unheard of in childhood. Then there's asthma, arthritis, some types of childhood cancers, etc.

 

At my youngest son's elementary school, 1 of every 30 students, takes a prescription drug during school. This doesn't include the kids that are taking meds, that aren't taken during the school day.

 

You may find that Jason's mild tics, are almost a blessing, if it helps the two of you uncover some facts, that again, I wish I would have known, prior to having my sons.

 

Keep reading and asking questions!

 

Kim