Ask Dr. Ticcy: My daughter just got diagnosed and I don’t know what to do!

Ask_Dr_Ticcy_Logo-238x250Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to tsfc@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

My daughter was just diagnosed with TS. I don’t know what to do. I am a teacher but I don’t have experience with TS. Please help!

Newly Diagnosed

Dear Newly Diagnosed,

Hearing that your son or daughter has TS can be confusing, and downright scary, for anyone, even those of us with a medical or education background!

What should you do?

First, take a close look at some wonderful TS resource websites, such as the New Jersey Center for Tourette Syndrome (NJCTS) or the Tourette Syndrome Foundation of Canada (TSFC).

Since you are just beginning to learn about the complex condition that is Tourette Syndrome, you can be easily fall victim to information overload. This is why these websites (and others) are helpful.

Second, purchase or obtain a copy of the TSFC’s Handbook for Families. This is a comprehensive guide to all things Tourette Syndrome, and it is written for moms and dads by experts and parents. You can purchase a copy online here.

Next, connect with your local chapter or resource unit. For TSFC, you can e-mail them directly by getting their e-mail at www.tourette.ca or you can ask the National Office to connect you by sending a request to tsfc@tourette.ca. For NJCTS, find the list of 5 statewide support groups at www.njcts.org or send an e-mail to info@njcts.org.

If you would like “virtual” support, visit the TSFC’s online forum by clicking the “Forum” option at www.tourette.ca. Signing onto the forum enables you to post questions, participate in discussions, and read about what other parents of kids with TS are thinking and feeling.

In terms of medical treatment, there are a few things to keep in mind…

  • You may want your son or daughter to see a specialist on an ongoing basis.
  • To learn more about possible treatments, take a look at the Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome, available as a free PDF download here or as a softcover book here.

A few points to remember as you start your journey of learning about TS:

  • TS is not fatal! You cannot die from it!
  • While tics may be severe now, many adults (though not everyone) experience less tics as they age.
  • TS does not have to “hold” a person back — many people with TS are lawyers, surgeons, singers, dancers, computer scientists, teachers and so on. Individuals who do find that their disorder or combination of disorders affect their employment decisions still have many options. For example, a person with TS and OCD may opt for a work-from-home job to accommodate their conditions.
  • You not alone: Many other parents are in the same situation or have been in the same situation.

TSFC and NJCTS are here to help you through this challenging time.

Let them know if you need help by calling or emailing. A staff member or volunteer will provide you with assistance directly and/or refer you to another organization that can help.

Best wishes to you and your daughter (or son for those of you with sons in the same situation as Newly Diagnosed),

Dr. Ticcy

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