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 Information for Parents/Guardians

 

 

This site is intended to provide information for children dealing with TS. 

 

While coming to terms with your child's Tourette's Syndrome (TS) can be difficult, remembering that TS does not change who your child is and finding good information about TS can help. 

 

 

Every child with TS is different.  While age of onset, age of peak tic severity, and tic severity  can vary greatly, there are some statements that are true of "most" children with TS.  Most children have the onset of tics between the ages of 5-8.  Most children will see a peak in tic number and severity in early adolescence and then will see tics decrease in late adolescence into early adulthood.  Most children with TS fall into the mild to moderate category in both the number of tics and the severity of those tics.  It is not uncommon for others (teachers, other family members, neighbors, etc.) to not notice that these children have tics or not understand what these movements and sounds are. 

 

 

Tics wax and wane, which means that there are periods of decreased tic activity followed by a gradual or sudden increase.  Don't be alarmed when this happens.  It is completely normal for a child with TS.

 

 

Seeking help from a qualified Neurologist or Neuropsychologist may be necessary (especially if your child has severe tics or the child has other conditions along with their TS).  Before scheduling an appointment make sure that the doctor in question has experience with TS patients.  Getting into a specialist can take time.  In the meantime, the most important thing to remember is don't punish your child for the tics and don't ask him/her to stop.  Asking him/her to stop may actually increase tics.  Counseling for parents can help too.  One of the most important factors in determining how a child deals with their disability, is how the parent(s) or guardian(s) reacts to the child.  Having a support system for the parent(s) is also very helpful.  Many areas have TSA support groups.  Don't be afraid to seek medical and mental health advice for you child.  Your child can live a very successful life with TS.      

 

 

 

Many times, children with TS will have other c0-morbids (other disorders/syndromes that occur along with TS).  However, the only known condition to have a definitive link with TS is OCD (Obsessive Compulsive Disorder).  Any child can potentially have any diagnosis along with TS.  Don't be alarmed:  Just because you child has TS does not mean he/she will have another disorder.  Some of the most common co-morbids that concern parents are OCD, anxiety, depression, ADHD, Asperger's, Bipolar, developmental stuttering and learning disabilities.  We have chosen not to go into co-morbid conditions here because the site is intended to teach children solely about their TS.  We encourage you to seek help from a qualified professional if you think your child may have more than TS on his/her plate.  It is only when you treat the correct condition, that you can truly help your child.

 

 

 

There are many websites with more information for parents and adults about TS and common c0-morbid conditions.    

Please take some time to visit some of these sites found on our links page. 

 

 

 

 

 

 


 

 

 

Disclaimer- I am "just a mom".  Every effort was made to insure this information was as accurate as possible.  However, no information found on any website should be substituted for the care of a licensed competent professional.

 

A WORD ABOUT SPELLING
The official name of the condition, according to the DSM-IV-TR, is Tourette's disorder.
Tourette's is also referred to as TS, Tourette Syndrome, Tourette's syndrome, GTS, and Gilles de la Tourette's Syndrome.
You may also see it referred to as the Tourette Syndrome Spectrum Disorder,
but many proponents of this terminology include conditions in this alleged spectrum
which have not been shown to be part of or genetically linked to Tourette's syndrome.
Common misspellings are tourettes syndrome, tourretts, tourrettes, touretts, terrets, terets, turettes, and turrets syndrom.
Tourette's disease is another common misnomer (it's not a disease).
Another common misspelling is ticks: ticks are nasty beasts that bite dogs and people. People with Tourette's disorder have tics.

 

Thank you to TSNW for permission to use the copywrited wording above and for her countless hours of dedication to Tourette's education. 
Thank you to Haejinn for permission to print her story on how to tell kids about TS (found on the FAQ page).
Thank you to Haejinn, SLeaska, HBool, Glen625,Sabina0815, MaterialDiva, BlueChin and KBurra for their support and help getting this website up and running.  It was truly a collaborative effort.
Thank you  to Teri and Leah for their input and support.  Not only have you helped with this website but you have also supported us through this journey.  Words cannot thank you enough!
A huge THANK YOU to our son for not only helping with this site but for teaching me more about life,  humility, and humanity than anyone else I know.

 

Copyright 2006.  All right reserved.
No part of this publication may be copied, re-printed, or used in any form without my prior written consent.
By Cristimo3: Growing Up With Tourette's Syndrome- Information for Kids