My 6 year old grandson was just diagnosed with Tourette Syndrome

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   donotfearposted 13 years ago

   I know this is not a death sentence. But I hurt for him.  I know he's different from the other kids....he just can't help it!  Bless his little heart, he's the most joyous child you'll ever meet.  Funny, outgoing with a big vocabulary.  But just pushy enough to get in other kid's space.  His hyper activity gets him in trouble.  He has flailed around so much at school that he accidently hit a little girl in the face with his coat while he swung it around. He's not aggressive in violent ways, just moving around all the time.
   
   He sometimes speaks out loud in the class room or spontaneously gets down and turns a somersault at inappropriate times.  Or maybe he's pulling at the velcro on his shoes over and over again, disrupting the class. Spitting on his shirt repeatedly or licking his lips til they are chapped.  Sometimes constantly touching or repeating the same thing to me.  Blowing air out of his mouth, saying he's blowing the germs out.  Gee, what more is there?
   
   I've done some research, we are set up to get Occupational therapy for him, behavior therapy for him and his mother as well as a new doc. I just worry about the other kids making fun of him for some of the things he does and the fact he doesn't recognize social cues or boundaries.  Keep him in your thoughts and prayers...........Here he is on our float in October....
   
   

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      Keri Summersposted 13 years agoin reply to this

      As I was reading this, and comments, I was glad to see that you were keeping open-minded about looking into alternative therapies, and was wondering about diet, as so often this seems to affect conditions where it may seem on the face of it there's unlikely to be a connection.  Then I read aguasilver's post.    I hope that your grandson's diagnosis helps your family and him to come to terms with why his behaviour is a little on the repetitive and boisterous side.  "Labels" can be "controversial" but I think people are far more tolerant, make allowances, and even feel supportive towards parents with such children when they have an explanation for it.  I think to have anxiety about being "different" and not having an explanation for it, can be a lonely place.  I wish you all well.  I hope that you will find things that help in due course.  Also, as we know, conventional doctors when asked will often talk down suggestions for other forms of treatment, without experience of them, to protect their patients from "unproven" treatments.  Alternative practitioners vary greatly in their ethics, sometimes their enthusiasm is misplaced, and will often say they can help a condition when they don't even understand it either.  Eg, everyone was passionate about how much they could help with my CFIDS 'cos they thought it was just about lacking energy.  But I do believe in keeping plugging away for the therapies that can really make a difference when you get the best therapists.  Some can help a little, some can help more than you ever dared think possible.  Good luck with it all.

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         donotfearposted 13 years agoin reply to this

         I agree!  And thank you very much.

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      Brenda Durhamposted 13 years agoin reply to this

      What a cute kid!  Sorry to hear about the diagnosis, and I hope somehow he gets healed!

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         donotfearposted 13 years agoin reply to this

         Thanks, Brenda.  I appreciate your concern....

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      medicinefutureposted 13 years agoin reply to this

      This child can be made to behave normal by alternative therapy. I am writing detailed article on this syndrome to help  you.

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         donotfearposted 13 years agoin reply to this

         Send me a message when your article is complete......

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            medicinefutureposted 13 years agoin reply to this

            sure, please let me know have you any faith in homoeopathy?

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               donotfearposted 13 years agoin reply to this

               I use natural remedies for myself all the time. However, with my grandson, I don't have control over what his mother chooses to use.  I could be of some influence, I'm sure, but then she doesn't listen to me half the time.
               
               If his mother were disciplined enough and would alter his diet, we would see marked improvement.  Plus the fact that Pap lives there with them, and gives over to him all the time with sweets and things.
               
               A never ending battle.

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      moonlakeposted 13 years agoin reply to this

      I'm sorry to hear this about your grandson. I hope for the very best for him.
      When our son was teen they thought he had tourettes.
      From almost the moment we brought our son home from the hospital I had noticed his little body shake. The doctor said that he was fine and of course  he never saw him shake. All babies shake a little but this was different and strange.  He was our third and I knew it didn’t look right.
      When he was a teen I stopped taking him to his doctor and took him to my doctor. My doctor thought it looked like tourettes. We were worried but after all the test it turned out that he had tremors and very likely inherited from me.  He still has them we see them when he’s trying to open something up. He won’t take any meds for them and didn’t want  to as a teen and we didn’t make him. Tremors are not harmful just a problem to live with. He gets sick of people asking him why he’s shaking and sometimes they think he’s drinking when he hasn’t been.   
      Even with his shakes he was a popular kid in school

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   Shanna11posted 13 years ago

   Aw, he looks super cute and the story of him hitting the girl with the coat made me laugh-- I knew plenty of boys like that as a little girl!  A good friend of mine in High school had tourette's-- he was a genius and when people got to know him they stood up for him and he was rarely bothered.
   
   Kids can be mean, but he looks like a sweet boy- I'm sure with all the attention focused nowadays on reducing bullying that he'll be okay. I'll keep him in my thoughts!

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   Debby Bruckposted 13 years ago

   Giving hope. Please visit the story I wrote about an award winning Film producer Laurel Chiten who has faced this diagnosis. Blessings to you and the family

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   IzzyMposted 13 years ago

   At least your little kid has an excuse.
   
   Sorry not putting him down in any way, but my kids, who know Facebook inside out, swear like troopers as a matter of course.
   
   I tried telling them they are out of order, but if anything, my messages made them worse.
   
   Now they don't even talk to me.
   
   Well, newsflash and all those exciting things, the feeling is mutual.
   
   Learn to use the internet, or don't. I wanted to use other words there.LOL
   Tonight I am saying goodbye to a lot of things, and this is one of them

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   donotfearposted 13 years ago

   Thanks, guys. I'm going to continue researching this thing for natural treatments. He's the sweetest thing.....

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      rmcrayneposted 13 years agoin reply to this

      Good for you donotfear!  I too believe natural and alternative medicine are the way to go. 
      
      Look into The Body Ecology Diet.  It is a book by Donna Gates.  There is also a website.  Best of luck.

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   Mighty Momposted 13 years ago

   Hello,
   When I got the alert you had posted a forum thread I had to check it out (didn't even read until I got on here the topic).
   My knowledge of Tourettes is limited and probably based on stereotypes. I think it is related to Asberger's and/or other forms of Autism (?)
   
   
   I hope you find lots of helpful support from other families that have navigated this particular life channel ahead of you.
   
   No matter what, I hope you will continue to enjoy your grandson for the special blessing he is.
   MM

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      donotfearposted 13 years agoin reply to this

      Thank you , Mighty Mom, this means a great deal to me. Just so you'll know; Tourette's is neurological...not autism or asbergers.  They definitely ruled it out first thing.  I'm hopeful of complete acceptance and resolve the symptoms.

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   aguasilverposted 13 years ago

   Just a hunch from our own experiences, but switch the boy to a gluten and MSG free diet (there are plenty of alternatives when you look) and see how he may change in three months.
   
   Gluten and MSG are major disruptor's of our systems, and if he is prone to a reaction to them, it may make the difference.
   
   Email me of my profile if you want more info.
   
   John

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      donotfearposted 13 years agoin reply to this

      Agua:  I wish I could switch his diet!  He only stays with me on the weekend. As it stands now, his mother (my daughter) is not consistent with a proper diet. She lives with her father and he gives the child non-nutritional foods for the convenience.  My grandson will hardly eat vegatables..we do work with him, though, in learning to like other foods.
      
      I'm very aware how gluten affects the body. I learned about it from my Lyme friends (I had Lyme last year).   Of course, the medical community and big pharma don't want us to know how diet and building our immune systems properly will prevent and reverse many things.  I'm going to suggest the better diet to her and see what she says, though she's most resistant to most anything I say these days.

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   leahleflerposted 13 years ago

   Sending hugs to you, donotfear - he looks like such a sweet boy and he is obviously witty and bright. Those qualities will carry him far, along with his supportive family.
   
   Our son has completely different issues, but we often do an "all about me" introduction at the beginning of the year (he wears hearing aids and will have a feeding tube for next year). This past year, we did an explanation of his hearing aids and let the kids see them and how they worked. By the end of the story time/presentation, most of the kids were BEGGING for hearing aids (sorry to their parents) and they are very supportive of Nolan. Kids respond to these things well if it is handled right - by informing the other kids of Nolan's deafness, they understand that he's not being rude when he ignores them... he just didn't hear them. It makes a big difference in peer relationships when the other kids "get it."

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      donotfearposted 13 years agoin reply to this

      Once he's more aware that he actually IS different from others, then I plan to approach it and encourage him in this same manner.  Great way of educating the other kids and helping him be comfortable with his problems.

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   elayne001posted 13 years ago

   Our granddaughter was also diagnosed with Tourette Syndrome. She is very active and smart. Her "ticks" change - one time it was a chronic clearing of her throat. Now she closes her eyes tightly and then opens them. The doctor said it may change and get worse when she is a teenager. She is now 11. Otherwise, she is a very intelligent, but sometimes can be a bit overbearing. She loves to tell people what to do. She is very honest, sometimes without thinking before she speaks, but that isn't too extraordinary for someone her age. She is also very creative. Sounds like you are looking at the positive in your grandson. Support and love him - that's the best you can do for him.

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      donotfearposted 13 years agoin reply to this

      This sounds just like my grandson!  He was spitting on his shirt in church today, so I handed him a paper towel and told him to spit on the paper towel instead.
      Thanks for the support.

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    TheMagicianposted 13 years ago

    I'm sorry to hear about this... I'm sure he will be fine though! I've been diagnosed with severe OCD, and a small form of Tourette sort of comes with it... I have many little tics that might be similar to his, such as blinking hard, making this odd high pitched sound with my throat (i cant stop sometimes and it drives me nuts!), clearing my throat (done it so much my tonsils had to be removed at age 8, pausing before speaking or telling a story, and a bunch more... I'm 18 right now. I was on Prozac, but that did nothing. Now I'm unmedicated. I've purchased a couple books, one of them a children's book, to help overcome the OCD and the tics that come with it. Perhaps looking into such books could help him? Just a thought

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       donotfearposted 13 years agoin reply to this

       What are the name of some of these books?

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    leenamarthaposted 13 years ago

    I believe in natural and alternative medicine are the way to go.

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    Joy56posted 13 years ago

    that is so unfortunate,.   the sad thing is that other people sometimes dont even try  to understand..... thinking of all the family..... hugs

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    S G Huppposted 13 years ago

    If it makes you feel any better...two of my daughters attended high school with a boy who has tourette syndrome.  He was treated just like everyone else and in fact was a very involved member of the "in crowd", got good grades etc, and was even voted "most likely to succeed".  He's in college now.  He never let it slow him down, never expected any differential treatment...I guess my point is that even though it will be a challenge, I'm sure your grandson can do very well.

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       donotfearposted 13 years agoin reply to this

       Thank you for that encouragement.  He's a very outgoing child and funny.  So joyous!  He's gained about 15 lbs since this picture last July due to the medication he's been on for ADHD.  He weighs 68 lbs!  At 6!  Plus, he towers over the kids in his class.
       
       

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    OCDKidsposted 13 years ago

    Dear donotfear,
    In reading your article, I recognize some very familiar issues which I'd like to share with you. I have a 12 year old daughter with OCD and  Tourette Syndrome. Her symptoms began just before the age of four. We were not as fortunate to have a diagnosis as young as your grandson.
    Tourette Syndrome is a co-morbid illness. Rarely, if ever, is it to be the only diagnosis to come. When you write, “He's not aggressive in violent ways, just moving around all the time,“ it leads me to think of ADHD. ADHD is often found to have co-morbidity with  Tourette's. When you go on to describe his behavior with his “Blowing air out of his mouth, saying he's blowing the germs out,” reminds me of my daughter's OCD. She used to do the exact same thing when she was younger.
    I suggest, assuring he has a great pediatric neurologist and a therapist who specializes in this spectrum of disorders associated with  Tourette's. These two specialists should be able to correctly analyze and diagnose any additional issues he may be starting to face. If he has beginning on-set of OCD, it's imperative to get him into a highly qualified CBET/ERT (Cognitive Behavioral Exposure Therapy or Exposure Response Therapy) treatment program as early as possible providing him the  necessary “tools” enabling him to recognize and resist the urges of his obsessions and compulsions.
    
    I'm happy to report, although we continue to struggle with my daughters OCD, as she's grown older, her Tourette's  symptoms have drastically declined and are not even noticeable anymore to others and pose minimal problems for her personally. Please, don't hesitate to contact me if I can provide any additional insight, experiences or advice since we've been navigating these waters for almost 9 years now.
    Most Respectfully, Lisa

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       donotfearposted 13 years agoin reply to this

       Thanks Lisa!!
       
       We took him to the autism specialists in Dallas at Childrens Hospital. That's where we got the confirmed diagnosis.  He has been on meds for ADHD for about 5 months now. (Intuniv/Risperdone)  Originally, the NP who diagnosed him, told us he was ADHD (which he is) and Bipolar D/O.....NOT!  We knew he was not BP, even with my experience in mental health, I knew it was incorrect. 
       
       Currently, he's already been assessed by the Occupational therapist and awaiting news on which caseworker will be assigned. When his complete records are returned from Dallas, we schedule ARD meeting with school. He's doing fairly well at school now.  It's confirmed he has NO learning disability and a very normal IQ, in fact, quite intelligent.  His vocabulary is good.  He gets tutoring 3 times week with Dyslexic coach to help with learning (he likes this). 
       
       Have a local psychiatrist who will handle the meds...actually, it's his mother's psychiatrist, so he is familiar with the family dynamics. OCD runs in the family....including myself! (mild)
       
       We are searching for a suitable behavioral therapist. Locally, I don't think we have one available. We'd go to Dallas or Little Rock for this if we found a good one.  Again, thank you for your help.   Any suggestions?

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          OCDKidsposted 13 years agoin reply to this

          Your very welcome! I would suggest contacting NAMI, National Alliance on Mental Illness, (nami.org) as they provide a referral service. I would also email Dr. Michael Jenike   (jenike@comcast.net). He is a renowned leader in the field of pediatric/adolescent OCD with Harvard Medical School and McLean Hospital. He is very helpful and may be able to give you a referral. For an excellent list of questions to ask the therapist I recommend, http://www.anxietywellness.com/Article% … apist.htm.
          
          The most important thing I've learned is that you must find someone who has extensive training, experience and high success rates.
          I hope this helps, and I hope you will keep me posted.
          Lisa

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             donotfearposted 13 years agoin reply to this

             Thank you, Lisa (OCDKids)!!!!!

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    puter_drposted 13 years ago

    As a child, I was introduced to Tourette's by the situation that a member of our church was afflicted with it. It brought us great glee to hear him cry out a stream of obscenities during the sermon. Of course, his family and many of the adults were horrified by the outbursts.
    
    In later life, we were reintroduced to it when one of my daughter's teachers had this affliction. She was nearly at the point of resigning, when she found a treatment that helped her, and as a result, the teacher went on to help our daughter spark and interest in music that she cherishes today.
    
    There are certainly treatments that work. You just have to find the right one for your grandson.

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