New to it all!

[Stuart]

Hi...

Thank God I came across this forum during a web search. My daughter has been doing the sniff and couch tic for months but we thought that it was just cold/allergies. It wasn't until the head shaking showed up 4 days ago that we put everything together. My wife and I are still reeling from the fact that our little girl has this condition. We need advice on how to cope, how to help our daughter cope and if, when and how we should inform those who come into contact with her about the condition i.e. teachers, grandparents, dance and choir instructors, etc. We were told by a peditrician friend of ours that in her experience talking about it to the child or in front of the child about it usually causes it to become more frequent in the short term. Any thoughts, suggestions and prayers would be most helpful and appreciated. My main concern is regarding the social aspect and the self-esteem of the tic and how best to explain it on terms my daughter will understand. Thanks.

[Laurensmom]

Stuart, let me say that many kids have tics, and most outgrow them quickly. However if the tics persist for at least a year in total, then your child may have TS.

 

I put this together shortly after my daughters dx. It helps me to have perspective, personally:

 

 

A BALANCED LOOK

 

About 85% of children with Tourette’s syndrome experience diminution or remission of their symptoms during or after adolescence. Symptoms remit by a median age of 18 years in about 75% of cases. ~ VOL 108 / NO 5 / OCTOBER 2000 / POSTGRADUATE MEDICINE Ref: Bagheri MM, Kerbeshian J, Burd L. Recognition and management of Tourette's syndrome and tic disorders. Am Fam Physician 1999;59 ( 8 ) : 2263-72

 

www.postgradmed.com/issue...te_tic.htm

 

“It's best to consider most TS to be a developmental variant of normal that will probably become more stable and less obvious in adolescence.” … Can a Person "Grow out of" a Disorder? Yes. Development is a dynamic process. Symptoms may completely disappear (and may return) or lessen to the point where the criteria are no longer met. … 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. ~ The definition of TS has changed over time and is not fixed. The definition is intended for clarity among clinicians and researchers. It does not represent a "thing" that you have. …Roger D. Freeman, M.D., Clinical Head of Neuropsychiatry Clinic at the BC Children's Hospital, Vancouver

 

www.tourette-confusion.blogspot.com/

 

Children diagnosed with Tourette's syndrome, a neurological disorder characterized by uncontrollable behavioral tics and verbal slurs, have an excellent chance of improving by young adulthood, a new study reports. ~ Journal of Child Neurology 2001

 

www.drgreene.com/21_397.html

 

Tourette syndrome is a developmental neuro-psychiatric disorder with a long-term course that is favorable for most patients.

 

At least 100,000 Americans have Tourette’s syndrome, named for the French neurologist who first described the condition in 1885. Its symptoms typically begin when children are in grade school, with males outnumbering females three to one. While there is no cure, medication can reduce symptoms. Many children outgrow the condition after adolescence." ~ Mayo Clinic

 

www.mayoclinic.com/invoke.cfm?id=DS00541

 

In patients with Tourette's syndrome, tics began at a mean age of 5.8 years and were most severe at a mean age of 10 years. The level of severity of tic symptoms during the worst ever period was associated with older age during this period but not at baseline. By 18 years of age, most patients were free of symptoms … ~ Yale U School of Medicine

 

ebmh.bmjjournals.com/cgi/...ull/2/1/24

 

Does Tourette Syndrome Ever Resolve On Its Own? Yes, in majority, tics tend to resolve as the children approach puberty. … Particularly if it's pure Tourette syndrome, without any of the other features, it has a very good prognosis. ~ Best Doctors

 

www.bestdoctors.com/en/as...200_q5.htm

 

I don't understand why some literature says TS is a lifelong, chronic condition, and other says most tics often remit or improve in adulthood. What can I expect? Again, this is just another case of older studies (which are still often quoted) versus newer studies, which show that the vast majority of tics remit or improve after adolescence. No one can predict the outcome for any individual, but the research shows that prognosis is optimistic and that most tics remit or improve. ~ TS Now What

 

tourettenowwhat.tripod.com/FAQ.htm

[Cum Passus]

Welcome Stuart,

 

You will be in our prayers.

 

I took our son's dx really hard. It was feeling every emotion one could have. One thing my pastor said really helped " You must pass through Good Friday before you get to Easter Sunday." Those words echoed in my head, and made so much sense.

 

For my son, because he was 12 at the time of dx, we let him lead us. It was hard at first, but I think that is because it hit him so fast. The more time went by the more he seemed not to care. I really believe my son was the biggest help. The first time he noticed I wasn't eating like normal he spoke up. If he caught me crying he would give me a hug and tell me not to cry. I feel bad it took me so long to start listening to him.

This forem his a blessing our worries don't seem so bad once you read some of the good things that have helped our kids.

 

God Bless

C.P.

[Laurensmom]

Hi...

Thank God I came across this forum during a web search. My daughter has been doing the sniff and couch tic for months but we thought that it was just cold/allergies. It wasn't until the head shaking showed up 4 days ago that we put everything together. My wife and I are still reeling from the fact that our little girl has this condition. We need advice on how to cope, how to help our daughter cope and if, when and how we should inform those who come into contact with her about the condition i.e. teachers, grandparents, dance and choir instructors, etc. We were told by a peditrician friend of ours that in her experience talking about it to the child or in front of the child about it usually causes it to become more frequent in the short term. Any thoughts, suggestions and prayers would be most helpful and appreciated. My main concern is regarding the social aspect and the self-esteem of the tic and how best to explain it on terms my daughter will understand. Thanks.

 

Stuart, was your child dx'd with Tourette Syndrome? It's possible her tics will pass and if that's not the case. If she has "childhood tics" she'll not need a deep explanation. I would simply tell her she has "tics" and tell those she comes in contact with the same. You needn't say that she has Tourette Syndrome if your not sure just yet. Also, you needn't say she has TS until you're comfortable explaining it to her. I would try to be very matter of fact, and not overly dramatic when you do mention it, if that time should come.

 

The first thing to do is care for yourself. Take time to adjust. Then, after a while, you can explain fully to her.

 

I said something like: "Oh, you know those tics you're having, there is a name for them - Tourette Syndrome. It's a condition that effects lots of kids and some adults. Most people outgrow TS by the time they're adults...." ETC. I'd then ask if she has questions. But, I think presentation is very important.

 

Thankfully we had a friend who had TS as a child, and my daughter adores him. So, we can keep things light by reminding her of this friend when she has felt like a bit of an outsider. Further, we tried not to appear "glum" when we told our dd. It was as nonchalant/unemotional as could be.

 

Hope that helps?

[Chemar]

Hi Stuart and a big welcome to Latitudes

 

as there are so many different things that can cause childhood tics that I would truly encourage you not to worry.

As Laurensmom has correctly pointed out, the majority of cases of "transient" tics resolve naturally, and, even if this is TS or another one of the tic disorders, there are many things that you can do to help your child both physically and socially

 

Your doctor is spot on about encouraging you not to let your child see you paying attention to the tics as this does seem to cause an increase, especially in people with TS. At the same time, I also do beleive in an upfront approach when it comes to school and social/extramural activities, where it is IMHO best to simply tell peers and teachers etc that these movements are called tics, and that they happen without being able to be controlled, and that there is nothing serious about them. As you move further on in diagnosis, so you can elaborate. Most of all I would encourage you to help your child not feel that you view her any differently and so help her to also get the focus off the tics. Most people who tic are often not even aware they are doing it till someone draws there attention to it....so she will likely relax a lot more when she feels people arent observing her all the time

 

I would encourage you to read around here as much as possible, and, if you want an excellent book on the subject, consider the one recently released by Sheila Rogers which you can access info on from the main page at http://www.latitudes.org

 

Just keep asking questions here as you read. We are a group with many different experiences and so can relate on many different levels

 

glad you found us...it is so important to have a support group for yourself too

 

Cheri

[quan_daniel]

Stuart,

Everybody or most of everybody on this board has gone through similar experience that

you are going through now.

 

I would tell you there is a 90% chance that there will be light at the end of the tunnel.

 

What I mean is, most kids here have their tics greatly reduced or disappeared as a result of some

hard and delligent work by their parents or themself.

 

TS is an observation of a condition and does not tell us what causes it. It can be many factor , predispose

by genetic makeup and/or by enviromental factor such as flu shots that contain mercury,etc...

 

Do not worry about 1 year label if tics do not go away. Do not worry if it is transient or not transient.

 

Often time the labeling is a guesswork and not accurate.

 

We started to talk to the principal who in turn suggested talking to the guidance counselor.

We arranged that in such a way, that he always has his best friend in his class for his future year in school.

Meaning if he is in second grade now, then on third grade that he will still sees his best friend.

 

Familariy makes him comfortable. Turns out he never needed it and his best friend are no longer his best friend but he met bunch of other friends. His current teachers and subsequent teachers now has his profile

and should be passed down through grades.

 

Most kids on this board are highly sensitive and allergic to foreign substance. There are many steps in

improving his living environment mainly your current home, and especially his/her bedroom.

 

Food allergy is a major cause and so is food coloring.

 

Light flickering is often mentioned.

 

PANDAS caused by Strep bacteria.

 

Substitute TV day in school to book reading day when arranged with teachers.

 

Finally getting the correct nutrient through supplement and often time involve a good practioner.

 

There are lab tests that can be done for his allergy,yeast,and metal. Be warn those are not always accurate.

 

Beaware of false promises from other websites about a cure.

 

Ask a lot of questions on this board.

 

Don't dispair, it will only makes it worst.

 

--daniel

[kim]

Stuart,

 

I loved this statement, in one of the articles that Laurensmom posted.

 

The definition of TS has changed over time and is not fixed. The definition is intended for clarity among clinicians and researchers. It does not represent a "thing" that you have.

 

When my second son started exhibiting tics, I thought that I had better start talking to teachers etc., and let them know what he may or may not be responsible for being able to control in the classroom. Guess what, his tics have always been so mild, there never would have been any reason, for me to say anything to anyone.

 

Even when he did have a short course of head shaking, he only did it at home, not in school. He did, do it at baseball games, to the point where it interfered with him being able to pitch, for one season. That was almost 2 years ago. Maybe, just give things some time, before deciding.

 

I think with the advice you have already been given, and only you, really knowing what would be comforting or scary to your daughter, you will do just fine, deciding on what to explain to her. One thing I have noticed with my sons is, at the younger ages, kids do not seem to pay much attention to tics at all. Your daughter may get an occasional "why are you doing that," from another child. I think it's important to give her a way to respond, if it ever happens. The word "tic" at that age, will conjure up images of a bug on a dog (this from experience) so I told my boys, to just tell kids, that an allergy caused it. Once any type of explaination was given, it was just a non issue.

 

I actually got this idea from a Mom who was explaining that her sons excessive blinking and mild facial tics were caused by an allergy, and her Dr. said he would just outgrow it. She had no idea my sons had any tics.

 

As it turned out, both boys do have environmental allergies!