TV Show

[KellyL39]

I see there is another topic about this, but I've been upset since watching the special on Tourettes? My husband didn’t want me to watch it, but I did anyway and I haven’t been able to sleep since.

 

In my opinion, there was nothing inspirational or helpful about this program. All it left me with was a feeling of helpless/hopelessness. I have been able to deal with all of this based on our neurologist telling us that most TS is mild and manageable. I did not think that was the message of this show.

 

To sum it up (and I'm paraphrasing), they basically said it’s neurological and treatments are ineffective, other then the one child that had deep brain stimulation (so scary to me). They also said it typically starts with eye blinking, and then transient tics and then full blown TS that progressively gets worse. They also said rage is a common part of the disorder.

 

Is this the progression experience of the people on this board?

 

Don’t get me wrong, I truly felt sympathy for these families and know this is the reality of what they deal with. I just wish there was some positive outcomes included or more about alternative therapies. Why is it so hard for the media to include encouragement in their documentaries?

Edited September 19, 2010 by KellyL39

[ilovedogs]

I didn't know about the program, but I usually don't watch anything about TS. I have a few friends whose kids had progressively worse tics and then when they hit puberty, the tics disappeared. I've also heard the opposite: kids start out mild but get worse after puberty. Every child is different and the media tend to focus on what would be deemed sensationalism. I still believe that a healthy diet, magnesium, and allergy treatment help us. Will they take the tics away? NO, but they will make things more bearable for ds. I totally agree with you: they should do some news coverage on kids who have successfully been treated with alternative medicine but the big pharma who are in bed with our government don't want us to treat naturally or they'd go broke. Now, I'm not saying that drugs or pharmaceuticals are bad: they all have their place and can be used in certain situations including our kids if we deem necessary, but why can't natural medicine and conventional medicine work together?

 

Bonnie

[Chemar]

Hi

 

unfortunately we dont have delete in our minds but honestly, try your best to do that and dont watch any more of those types of shows. They are not representative of the whole and also neglect a vast wealth of anecdotal and other treatment options

 

That is not to negate the validity of the stories told. but it does give a very limited perspective!

 

my son manifest very very severe TS around his 10th birthday and we were filled with doom and gloom by those types of extreme or "hopeless" stories.

 

he is almost 21 now and doing great and that is no thanks to conventional medical opinion or treatments!

 

most people with TS have mild tics, never need treatment and tics resolve in their late teens to early 20s

 

others, like my son, may have a lot more severe symptoms but still manage to find effective treatments (in our case diet, supplements, accupuncture etc)

 

there may not be a "cure" yet! but there most certainly is hope to find ways to make things much much better once you determine what the best fit is for treatment

[faith]

I see there is another topic about this, but I've been upset since watching the special on Tourettes? My husband didn’t want me to watch it, but I did anyway and I haven’t been able to sleep since.

 

In my opinion, there was nothing inspirational or helpful about this program. All it left me with was a feeling of helpless/hopelessness. I have been able to deal with all of this based on our neurologist telling us that most TS is mild and manageable. I did not think that was the message of this show.

 

To sum it up (and I'm paraphrasing), they basically said it’s neurological and treatments are ineffective, other then the one child that had deep brain stimulation (so scary to me). They also said it typically starts with eye blinking, and then transient tics and then full blown TS that progressively gets worse. They also said rage is a common part of the disorder.

 

Is this the progression experience of the people on this board?

 

Don’t get me wrong, I truly felt sympathy for these families and know this is the reality of what they deal with. I just wish there was some positive outcomes included or more about alternative therapies. Why is it so hard for the media to include encouragement in their documentaries?

 

Kelly,

just to note, i did watch a little of that show, and beleive me, in the past I would be too terrified to, but I was curious, altho of course, i did not want my boy to watch it.. i wouldn't want him to be scared in thinking that could happen to him too.....

 

I don't think the intention of the show was to give medical advice on how to treat, but really more of a 'day in the life' type thing of these particular kids. I did note however, that the doctor or whomever it was speaking in cameo during the program, DID state that "most cases or tourettes or tics are mild enough not to warrant any medication or medical intervention, and that there are many people who have minor tics that go un-noticed. So basically, just pointing out that I don't think the program was necessarily to show what tourettes actually IS, but just the way it manifested in these particular children, and of course how they are coping with it.

[fiore]

Just another perspective on the show....If there is one thing I have learned over the years about this condition is that the severity of TS varies greatly with each person, as does what works for one may not work for others. Unfortunatly, for my 13yr old daughter, her tics are very severe and we have tried conventional, unconventional, supplements, diet, even dr. Stack's mouth appliance...all this with little or no lasting effects. When I watched the program, it lit a fire under me to just not accept that my daughter's future will be one of limited education, no job, and a lack of social interaction. The arguement of " she may grow out of it when she's in her late teens" is just not acceptable, when there is something that quite possibly can help her. I just can't get the years of lost education back for her. Our next step is DBS. I have not entered that decision lightly, but for us, in order for her to have a chance at a better quality of life, there is no other alternative. Since making that decision, I have made contact with the mom of Jonah in that program, and she told me it was a decision that has changed her son's life and the family..completely. My daughter and I have a consultation with neurosurgeons Dr. Starr and Dr. Lawrson at UCSF in Janaury. My hope is that they will do the surgery. If not, my next step will be to go to WI and meet with Dr. Shillay. I believe that we are all moms who have our kids best interests at heart and mine is to be the best advocate I can for my daughter.

[Chrisnick]

I watched this show and I had a feeling they were going to showcase the worst cases - it would have been nice to see a milder form of TS as well. I taped it thinking I would re-watch it if there were any good information on treatment....well needless to say I deleted it and I have seen it rebroadcast and I skip past it not wanting to see the show at all. I purchased a movie my mother saw by Hallmark called "Head of the class" about a man who struggled with TS and ended up becoming a teacher - I have not been able to talk myself in to watching it just yet. I get so emotional about the future of my son and his condition. One day I might get around to watching it...My mom cried through most of it but in the end she said it was inspirational just to see how he was able to perservere in the face of ignorance.

 

Did anyone see Head of the Class?

[Lynn777]

"Front of the Class" is not like some of these other documentaries. I am a mess about my son's tics & even though "Brad Cohen" does have severe TS, somehow this movie is still inspirational. I watched it very cautiously thinking I would turn it off if I had to, but I was fine. Again, I am really bad with anything media/TS related, so I feel pretty safe giving the movie a thumbs up. The only thing I wish they would have mentioned or worked into the story is that not all kids with TS have such intense tics. We will never get past the stereotype that "most" tic disorders are severe if no one EVER tells the other side of the story.

 

In addition Brad took many meds & in his book he says he thinks they might have contributed to the continued severity of his tics, but that too is left out of the movie.

 

Just my humble opinion

 

-Lynn

Edited December 10, 2010 by Lynn777