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  1. #1

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    My daughter is 9 years old and was diagnosed after 2 1/2 years of tics with Tourettes. The last years the pediatrician said that the tics she had was anxiety from all the miscarriages I had, new house, new school , my marital problems, now still jealous of her 2 year old sister. She was a very spoiled child since she was our first and my parents first grandchild as well as the first little one of all my friends. My youngest daughter is now 2 making them 7 years difference. My eldest's tics started with throat clearing to many different one and today has verbal as well as motor. She has always been very hyper (but then again , I guess she gets it from me who is always on the go.), more hyper than a child at her age should be. She can't play outside with her friends without screaming out. Anyways all to say is that a neuro. stated after a few questions and a 2 minute exam for her that it is Tourettes. I explained that at home we can no longer take the yelling out and her friends are also starting to be bothered and comment this to her. I wanted a prescription in case this tic really lasts long because she is also starting grade 4. He told me that she does not need but gave it to me anyways. It is Risperdal and I refuse to give her this. I am a nurse and I do not want to give this to my child. He sent me home with no other info just, contact the Tourettes society for help. I was very upset about this. I would like to know how others deal with accepting that their child has Tourettes.

  2. #2

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    whats wrong with risperdal? it works great for my tics with little side effects. i think its a great medicine. I am a 16 year old boy and I have been taking it for over a year... I am also on a low dosage and it works fine so unless you have some sort of horrible experience with it I would say go for it but its your decision

  3. #3
    Join Date
    Jan 2004
    Posts
    557

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    I would like to know how others deal with accepting that their child has Tourettes.
    Accepting a diagnosis can be difficult. After all, you have hopes and dreams for your children, and you want the best for them. It is not easy to see them struggle with a neurological condition that is beyond their control, and to know that the condition is going to be something your child and you will need to deal with for years to come, and possibly for life.

    For me, the key to success was to seek knowledge. We read everything we could about Tourette Syndrome, attended the TSFC conference to learn everything we could and to meet other parents and individuals with TS. What we found out was that my worst fears about what my child might be facing were put to rest. The kids that I met at the conference were awesome! So full of energy and fun! The adults with TS came from all walks of life, including successful business people, doctors, and lawyers.

    The next step was to figure out what we needed to do to help our child. Not only did we need to understand the disorder, we had to accept the symptoms. Our house had to be the place where our child could be himself. If he was ticcing we had to learn to NOT tell him to stop. The only focus we put on his tics were if they were hurting someone else, or were dangerous. We worked on redirecting those.

    We also needed to educate the people around our child so they understood the disorder and gave him every chance to succeed. We needed his teachers to look past the tics and see the child. We provided information, gave in-services and made sure that the teachers understood that the tics and other behavioiurs were neurological and not willfull. We then taught our child to advocate for himself.

    It has not been an easy path for my son, or for us. It took a few years before we were really able to completely look past the tics and not 'see' them at all. Our son faced challenges throughout his school years but he has grown into a caring, wonderful adult.
    Cathy
    Forum Moderator
    TSFC Homepage

  4. #4

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    Being a nurse I just don't like the medication Risperidal. It may work wonders for the tics but I still have not come to say that I will give this medication to my 9 year old daughter after seeing many patients in my 20 years of nursing on this. Of course if her tics get worse , and that is all they will give her , I will for her quality of life. I am just at the moment new to trying to cope.

  5. #5

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    dont forget that those patients are probably on extremly high doses the most I've ever had prescribed is like 2 milligrams a day. also this medicine has worked wonders for me for my stress level the only downside I had before was it was causing my sugar levels to go up but now that im on insulin it is a wonder worker
    Last edited by gaurdianAQ; September 16, 2008 at 03:12 PM. Reason: forgot something

  6. #6

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    The effects you witnessed in those patients may have been a result of their illness, not the drug. Just because the risperidone was originally developed to TREAT schizophrenia doesn't mean your daughter will GET schizophrenia if she takes it. Also, if these patients were being cared for in a hospital, they must have been quite ill, and were probably on higher doses than would necessarily be needed in your daughter's case. I know it's a difficult decision, and it's not the route for everyone. I agonized over it as well, but now I really can't see how my son (aged 10) would have any quality of life without it.
    Arlene

  7. #7

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    Thank you for your comments. I will still have to wonder about this. A new co-worker of mine has just started this week at work and has told me that her brother has tourettes and is now 18 years old. Their mother is a homeopathic and had given him Vit B3 and Vit B6 , fish oil and something else and it has made his symptoms go away. I know that everyone is different but I would like to know if anyone has tried this also????? At the beginning of the school year my daughter's tics where bad, now a bit better , less stress so I guess the tics are not as severe. She is quite a hyper active child (ADHD ????? ). Well I wish all who reads this a nice day....

  8. #8
    Join Date
    Mar 2007
    Location
    Chandler, AZ
    Age
    45
    Posts
    12

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    I just wanted to say that as a 36 year old woman with Tourette's, I am just one "living proof" that a normal, fulfilling life can be had with Tourette's. I have never chosen medication, although I respect that it has made all the difference in the world for many.

    Please remember that your daughter will feed off of your attitude, your stress, and your anxiety over it. From someone who's been there, I tell you that it's hard enough for a child to be different - your acceptance and reassurance will be HUGE for her in transitioning to her life with Tourette's. You can't make it go away - it just is, and you and your family WILL learn to live with it peacefully...I promise.

    Yes, I hate it at times, but I have to remind myself that it won't kill me - it's not cancer, or diabetes, or something that will affect my lifespan. It's just one of those things to make peace with. Your daughter will learn that "friends" who make fun of her tics are not friends worth having, and she will find those who see beyond the surface.

    Good luck...it will get better, with or without medication.

    -SB

  9. #9

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    I have tried the homopathic vitamins, I did quite a bit of research and bought a lot of money worth of vitamins and tried it for 6 months. Unfortunetly it did not work for my 2 sons.
    Risperidone has with both my 9 and 7 year old. I however still choose to give them fish oil and have eliminated wheat, dairy, food colouring and refined sugar! WHAT a difference it makes. When they have a "cheat day" and eat the things we have taken out, it makes a very hard day! Risperidone made a huge difference, like night and day and my oldest has severe TS and OCD and I was told he will NOT go past 2.0 a day.My other son has TS and ADHD. We see a TS specialist every 3 weeks and see a child phycologist every 2. Go with the flow of what you are comfortable with first. That's how I started out and now we are completly happy with what we are doing and dealing with in our day to day life.

  10. #10

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    sooooo u are saying that you dont let your kids eat sweets, wheat, or dairy products? isnt dairy kind of essential to living? and it may work but doesnt it seem kind of like a boring meal? lol and christine I agree with you that friends who make fun of the tics are not friends worth having. If they cant accept the tics and sounds then they dont deserve to be friends with your daughter.

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