I am trying to get The Doctors to do a show on Tourette's Syndrome and how it affects children. Many people think of cussing and yelling out when they think of Tourette's. I feel that people need to be educated on what Tourette's Syndrome is really about. I have identical twin sons(Caleb and Austin, age 10) that have Tourette's. Austin also OCD that goes along with Tourette's sometimes. I am sick of the disease being made fun of and portrayed as the "cussing" syndrome. I would love to take my sons on the show and let them show the world that it isn't all about cussing. It is a disease that can make their school days hell. It can cause them not to sleep at night because the OCD makes them afraid that they are going to die. I want to cry everytime one of my sons say that they wish that they didn't have Tourette's. But I remind them that there are many, many, children out there that have life threatening illnesses and that they should be very thankful that all they have is something that makes life more interesting and challenging. I know of many people in my area who have children with Tourette's, but yet there are no specialists in my area. I drive almost 6 hours to see a specialist at the Cincinatti Children's Hospital in Ohio. But it is well worth the drive--our Dr. is great. I need as much advice as I can get on how to advise my sons on how to deal with the kids that make fun of them for doing tics that are out of there control and I feel that the Doctor's could be a great help.
If anyone has any ideas on how to get my thoughts heard, I would love the help :)
Thank you!!
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Hello this must be a frustrateing thing to deal with on a daily basis. I recently watched a show where they showed a camp with all the children with tourette's. The children all seemed to come out of their shells. It is a shame how some people react to children or adults with tourette's. I know it is hard but you know what I think it is important that your children know they are special children and will be special adults. It is not their fault and it certainly is not their problem how others perceive them. It is about how you and family and friends can make them feel special,and not responsible for other peoples actions. But I agree it has only been in the last 10yrs more has been known about this problem.I think they should do a show and get more people aware. And more adults with children should help their children at an early age know not everyone is the same.
Smile
Sheilah
My best friend has Tourette's Syndrome and for her life was also hell growing up with others' who either didn't know any better or wasn't taught any better would make fun of her, thankfully though we found one another in 6th grade and have been friends ever since and we are 33 now. In each other we found a an understanding that needed no words ( I have Cerebral Pasly ) though she can talk when she becomes tired nervous or flustered he tic become very bad and she can con make complete and coherate sentences but I can understand her and I know what she needs. We have this inside joke about us having to interpret for one another all the time. She has thankfully grown out of many of the cussing, hitting and yelling tics that plagued her growing up so hopefully your boys may as well.
I hope that one day your boys will find true friendship like that where their disabilities don't matter to someone who looks inside and can see the wonderful boys they are, I wish I had some advice for you about how Tourettes but I can tell you this when someone said something about my disability I just told them that if God want everyone to be prefect then he would have created everyone like me, though your advice about them having tourettes just makes things interesting sounds like wonderful advice to me.
If you need my help I'm here and I can and will do all I can to help you get this topic on The Doctors. Have you thought about a letter campaign, having your friends who have children with this syndrome write into the show?
Lots of luck, Carrie
Carrie How kind to share this story. It is beautiful
Smile
Sheilah
i know how you feel. my BIL who is 17 has tourettes... he has it where he grunts. it comes out a lot when he is nervous he also has a bit of an OCD componate to it....
How are your boys today? I hope they are well and I hope they having been having a good couple of days. I've been thinking of them alot since my last post to you and am hoping that they will find great each day with a smile.
Lots of luck, Carrie
God Bless you Srhoades,
My name is Tammy and I have a ten year old son Tristan,who was diagnosed with TS back in Febuary this year.And yes you are right the struggle in school is completly unbarable sometimes.The one thing I found that truly did help with the children in schoolwas to have an assembly and address TS head on.At first my son was very embarrised to speak aloud about his condition,so I told him I would do it myself only if it was ok with him ,and he agreed.Well after about tenn minutes in to the program I was so proud that my son walked up on the stage with me.My husband is a long haul truck driver so my children and I have a bond that is unbelievable,anyway as he was walking up on the stage I looked at him and asked are you sure your ready son?And he nodded his head,so I introduced him and he was givien a standing observation.Since that day all of the children respected Tristan so much more,and instead of making fun of him or laughing when he cursed or made funny faces the children actually was so much more willing to ask if he was ok and also made more of an effort to be Tristans friend.But to tell ya the truth its the adults who we have more of a problem with,and that very discouraging to think that they just can't seem to accept my child .Adults give him more of a problem than anyone else.Unfortunatly we do not know anyone else with this disorder and we do not have any other support than from his doctor.I would be very pleased if we could stay in contact and perhaps let our sons be pin pals or something,Tristan feels so alone and sucluded from the world.There are so many things we have not been able to do naw that his tics have increased so much more.He also has all the asspects of ocd and add and adhd.thanks for listening I hope to hear from you soon.
Hi.
I wish you luck with educating people on TS. I have lived with it for 35 years. As a kid, (it started when I was 9), it was a bit difficult dealing with teasing and of course you're a clear target for the bullies of the school yard. For all of the trials that children deal with as they grow, TS is a significant, unneeded obstacle. All kids can find life and development difficult as can be seen on T.V. shows (life personified), but ad TS to the mix and those without TS haven't a clue what difficult is.The upside is that at least it's not brain cancer, but that's about the only upside. I truly feel for these children. My tics were not as bad as some that I have seen and of course like most TS sufferers, they evolve over the years.... I was diagnosed, but never sought drug therapy as I was told that was for severe TS (for those who could not live anything resembling a normal life). However, my wife was looking up TS treatments on the web last week and came up with something that I never heard of before. Nicotene, in the form of the non-carcinogenic patches that smokers use. Continued in 2nd post
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There was a reported study in 2001 from the University of South Florida where they found that thepatch signifiantly reduced the tics, the OCD etc... and that the patients could have their Haldol medication reduced by 1/2. This allowed more normalcy for the patients. Just to see, I tried the patch for 3 days (7 mg). Now here's the reason for my writing on a subject that I would rarely ever admit to in the past. I am tic and OCD free... The study said that the effect of teh patch will linger for days to a couple of weeks after the patient stops wearing it. I am 8 days out so far. I want to see how long it lasts before I have to reapply. They also said that the minor side effects of the pastch can be removed by instead going on Inersince (an abondonned heart presussure pill from the 1950s that the FDA recently reapproved for TS treatments at a much smaller dosage than that which was needed for actual hypertensive patients. I will be seeking a TS specialist this month to try this pill. Something to try for your kids perhaps if you don't like the idea of them taking zombie medication. I hope it works for some of you. All I can say is that I am tic free for the first time in 35 years and this is the best Christmas that I have ever had.
Michael
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