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Thread: Hello - I'm a parent new to the forum

  1. #1

    Default Hello - I'm a parent new to the forum

    Hello,

    My name is Sandra, and I am the mother of a beautiful, bright boy who will be turning 5 years old in March. He has recently been diagnosed with TS. I am so thankful that this organization exists to offer so much support and information about TS for parents; it's very encouraging to hear about so many children and adults who have been successful in dealing with this disorder. As well, it's comforting to know that I'm not the only one out there who is somewhat shocked and scared about this new diagnosis.

    My son began exhibiting symptoms in June of 2005 -- he would very often make a facial grimace (pulled his upper lip over his top teeth). I thought nothing of it at the time. Then, in September when he started JK, the grimaces stopped, and the blinking and sniffle started. At the beginning of November, I took him to our family doctor who thought it may be allergies -- we tried two different medicated eyedrops which didn't change his symptoms. I took him to the eye doctor to make sure that he hadn't scratched his cornea, and the eye doctor told me that his vision and eyes were perfect.

    So, at this point I knew that it wasn't allergies or a problem with his eyes, and I felt it had to be something more. It was at that time that, for some reason, I looked up Tourette's on the internet. There, I found information that caused me to suspect he may have TS -- descriptions of symptoms, as well as information about PANDA. Both my son and daughter had been in the hospital to be treated for a strep infection in the summer, and that was prior to my son having experienced any outward symptoms. Though I don't know if this was the origin, I felt I needed to bring it up to my doctor. I did, and she concurred that it could be TS. She referred me to a pediatrician in town who agreed that Tourette's may be what it is.

    In December, his blinking and sniffle disappeared and made way for a short run of lip licking and throaty noises, accompanied by loud inhalations and exhalations. That lasted for about a month, and he has just lost these symptoms and had them replaced with a new facial grimace (scrunching up his nose). He still sometimes makes the throaty noise.

    I have not had an "official" diagnosis made by a neurologist or a pediatrician who has a professional interest in Tourette's. Since the symptoms have only been visible for 6 months or so, I think it may be best to wait until this coming summer and then try to get an appointment with a neurologist or specialized pediatrician.

    Thanks for listening; any suggestions, information, or input would be so much appreciated!

    Sandra

  2. #2
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Hello - I'm a parent new to the forum

    Sandra:

    Welcome to the TSFC forum!

    I am glad you found us and you will find many of the same experiences you have gone through posted on the "Tic Parade" portion of the forum.

    The parents section is helpful too. You may also do searches for topic by using the feature above in blue.

    We made the mistake of thinking allergies too with my son about the same age since others had asthma in the family it was likely but wrong.

    How is he doing in school? Is his teacher aware he may have TS?

    Proper Diagnosis can take a year of monitoring in some cases to determine if in fact the tics are consistent. The process takes patience for everyone concerned. It took us much longer in our case.


    Does your Doctor have someone they can refer you too that treats TS or understands the disorder?

    In some communities there are diagnostic pediatricians that are driven to find answers and document the condition.

    Have you checked to see if you have a local TS Chapter in your area?

    I hope you visit frequently and this forum provides some support through your process. It has made a major impact on our family and I have found it a great support.
    PJK

  3. #3

    Default Hello - I'm a parent new to the forum

    Hi to PJK!

    Thanks for your support and speedy reply! My son is doing very well academically in school...in fact, his teacher has told me she feels he is very advanced for his age. Though he is not yet 5, he is reading at a Grade 1 level, and does well in all areas. Socially he is a little shy, but that's usually only when I'm around. Apparently he is quite social amongst his peers; it just takes him a little while to become comfortable with a setting. I have told his teacher about the suspicion of Tourette's. I actually debated about telling her, since he hasn't yet had the symptoms for a year, and my fear is that he may be unneccesarily labelled at the school. However, I did want her to be aware incase his little noises were disrupting circle time (the last thing I wanted her to do was continue to ask him to stop when he can't).

    I haven't been back to our family doctor since I had the appt. with the local pediatrician, so I don't know if she can refer me to someone who actually has a specialization in Tourette's. Needless to say, but the pediatrician we visited didn't really seem to know much about TS; infact, she made the diagnosis without actually seeing any of the symptoms (his little sounds were absent that day!), and she didn't suggest that I wait for a one year period before diagnosing. So, I really would like to meet with either a neurologist or specializing pediatrician...I will ask my family doctor if we can arrange that in the next few months.

    I have touched base with my local TS chapter, and am awaiting a reply re: information on support groups for parents. Last night I attended the video launch of two new videos on TS, and I left my information with them as well. The Tourette's Association of Ontario has also contacted me, and I spoke with the co-founder over the phone -- he, too, was very helpful. It's funny -- though I'm scared to learn more, I am also anxious to learn more, as I know that knowledge will help us to understand what is happening to our son.

    Thank you again for your support, and I look forward to sharing with you all in this forum.

    Sandra

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,870

    Default Hello - I'm a parent new to the forum

    Welcome to the TSFC Forum Sandra! Your experience continues to confirm that many physicians do not possess the diagnostic skills to identify Tourette Syndrome as a possibility.

    You may wish to get the ball rolling to find a competent specialist if your target for a consultation is next summer.

    Your local TSFC Chapter can probably point you in the direction of specialists in your area with an interest in Tourette.

    Your comment about not admonishing your son for ticcing is on the right track, since as you have probably learned, telling a person with Tourette to "Stop" will just serve to heighten their stress level making it more difficult to suppress, if indeed they are capable of suppressing.

    You may also want to role play a scenario with your son to rehearse how he would explain his Tourette to others who may ask about it. By preparing him for this situation will spare him unnecessary embarrassment in being caught off guard, and knowing what to say.

    In addition to the wealth of information on the Forum, have a look at the TSFC homepage where you can explore many of the articles available.

    You may wish to download and print This Document as a handy handout or reference piece to explain the basics of Tourette to others.

    Feel free to reply or comment on any ongoing discussion on the Forum or ask as many questions as you wish.

    Hope you find the TSFC Forum helpful!

  5. #5

    Default Hello - I'm a parent new to the forum

    Hi! Great to meet you! Steve said
    Your comment about not admonishing your son for ticcing is on the right track, since as you have probably learned, telling a person with Tourette to "Stop" will just serve to heighten their stress level making it more difficult to suppress, if indeed they are capable of suppressing.
    Absolutely! Not to mention it's just not good for a child's self image if he thinks he should be able to stop ticcing when we know he can't.

    And Steve said
    You may also want to role play a scenario with your son to rehearse how he would explain his Tourette to others who may ask about it. By preparing him for this situation will spare him unnecessary embarrassment in being caught off guard, and knowing what to say.
    This is a great idea too! Teaching him how to advocate for himself will make a HUGE difference in how he views his TS. And how he views his TS is a big part of how it will affect him. Something simple, since he's 5, would probably work for now. :D

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