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TV - ABC 20/20 program on Tourette's


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Hello,

 

I have not posted in a while, but have been back recently reading posts. I will give an update in another post -- I have a young daughter dealing with lyme induced tics (and slight OCD). I originally posted here not knowing the cause, but she later tested positive for lyme (and this is something that we previously dealt with a couple of years ago).

 

I was wondering if anyone here saw the one hour special program last night on ABC's 20/20? It focused on teenagers with tourette's. What did you think? Here is the link to their web site, where you can watch the full program (they have it divided into several different segments).

http://abcnews.go.com/2020

 

 

Regards,

Mary

 

p.s. Thank you so much to all of you! I have learned so much here, and in Sheila's book.

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Hi Mary,

I did watch it and was a little disappointed. I just don't like when they ONLY focus on the most severe cases. I do like though, how they show the resilience of those girls despite their severe tics. I do wish they would've given more info on treatments they've tried, known triggers (they did talk a bit about this but i would've liked more), family history, etc.....

I guess it would've been more like a three hour program though it they had gotten into all that! :)

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(This might be a hot topic here, I'm betting it will be.....)

 

I wouldn't mind commenting on this, I was thinking about it but felt a little overwhelmed from what I saw. I kind of just "happened" upon it last week, and of course, as usual when viewing something about tourettes on television, we are presented with the worst case scenarios, so I found it a little hard to watch. I am, on one hand, somewhat, let's say surprised? that there are actually cases of kids with symptoms that were shown, and on another hand, suppose I should count my blessings (and I do) that altho my son does struggle with several tics, they are not as pronounced and as uncontrollable as the ones for these kids.

 

Forgive me for wondering, but from what I saw, with the one girl who was giving a presentation for her new class about tourettes, I was surprised at how her tic seemed to almost take over as tho she had absolutely no control. and by this I just mean that it seemed like it just "happened" out of the blue, and was not an action that she made happen herself. don't know if I'm being clear here. I thoroughly realize that tics cannot be helped, my son has them, and I have twitches myself, but (and especially for me), if I were to be standing up talking to someone, even if I felt the urge, I could easily supress it or do it in an unobvious way.

 

I did catch the part about the other girl who needed to scream very loudly in school, but I was a little skeptical when they showed her filming her sister and she had to keep panning the camera down and saying "boobies, boobies, boobies". Please forgive me, I think I understand it is a thought process that makes her want to say these words, but somehow, if I were in the room, I would have wanted to say "stop, that's not appropriate". I have more to say about some of this, and I wouldn't mind opening up a discussion, for there have been some things on my mind. I think what I am feeling is that, yes, I understand that these tics cannot be helped, Lord knows I know it from my own experience with my child, but I'm not sure it is a good idea to, how can I put it, not correct some behaviors. I mean, isn't it still important to explain and teach our kids what is and what is not appropriate and acceptable, even tho they have this problem? I know my son struggles with getting irritated easily and sometimes is very snippy with me, however, I am at a point where I am just not going to allow this, we have to find a way to improve this behavior, I don't want him to have an excuse to behave this way. I am understanding of it, but I still want to teach him what is correct, and I think he should know what's right just like any other child. I don't tell him to stop ticcing, but I think it should be okay to gently remind him that he might try to do it a little "quieter" in school and not when he is directly near someone's ear. he does that to me when I'm driving and he is sitting up in the back seat, sometimes I have to say, please sit back, you're right in my ear. (I know he should have a seatbelt but when we are just going in the neighborhood, I confess I am lax :) )

 

I don't know, but I think that's what I wouldn't mind talking about. What is the line between our children not being able to help their tics (or behaviors) and still being able to teach right and wrong, and at the same time giving them reminders and skills to know how to navigate in public. ??

 

Faith

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I was very disappointed in the program. My daughter has pandas ocd (no tics). I happened upon the program, and was anxious to watch, in hopes of learning something. I agree, the girls and parents are to be commended for their resilience. The program however was severely lacking to inform, or help anyone. It should have discussed the causes of tics and tourettes, the diagnosis, the range of symptoms and severity, the treatments and the potential prognosis. It didn't have to be a science class- but I am sure they could have covered these topics in 15 minutes. This would have left the viewer educated. It was a missed opportunity...

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I agree. Unfortunately, when tv programs present information like this, they always seem to show the extremes. This further perpetuates the ignorance of society in understanding ts. I suppose, they seem to think that it is entertaining to show this. How disgusting to take advantage and exploit our kids!

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(This might be a hot topic here, I'm betting it will be.....)

 

I wouldn't mind commenting on this, I was thinking about it but felt a little overwhelmed from what I saw. I kind of just "happened" upon it last week, and of course, as usual when viewing something about tourettes on television, we are presented with the worst case scenarios, so I found it a little hard to watch. I am, on one hand, somewhat, let's say surprised? that there are actually cases of kids with symptoms that were shown, and on another hand, suppose I should count my blessings (and I do) that altho my son does struggle with several tics, they are not as pronounced and as uncontrollable as the ones for these kids.

 

Forgive me for wondering, but from what I saw, with the one girl who was giving a presentation for her new class about tourettes, I was surprised at how her tic seemed to almost take over as tho she had absolutely no control. and by this I just mean that it seemed like it just "happened" out of the blue, and was not an action that she made happen herself. don't know if I'm being clear here. I thoroughly realize that tics cannot be helped, my son has them, and I have twitches myself, but (and especially for me), if I were to be standing up talking to someone, even if I felt the urge, I could easily supress it or do it in an unobvious way.

 

I did catch the part about the other girl who needed to scream very loudly in school, but I was a little skeptical when they showed her filming her sister and she had to keep panning the camera down and saying "boobies, boobies, boobies". Please forgive me, I think I understand it is a thought process that makes her want to say these words, but somehow, if I were in the room, I would have wanted to say "stop, that's not appropriate". I have more to say about some of this, and I wouldn't mind opening up a discussion, for there have been some things on my mind. I think what I am feeling is that, yes, I understand that these tics cannot be helped, Lord knows I know it from my own experience with my child, but I'm not sure it is a good idea to, how can I put it, not correct some behaviors. I mean, isn't it still important to explain and teach our kids what is and what is not appropriate and acceptable, even tho they have this problem? I know my son struggles with getting irritated easily and sometimes is very snippy with me, however, I am at a point where I am just not going to allow this, we have to find a way to improve this behavior, I don't want him to have an excuse to behave this way. I am understanding of it, but I still want to teach him what is correct, and I think he should know what's right just like any other child. I don't tell him to stop ticcing, but I think it should be okay to gently remind him that he might try to do it a little "quieter" in school and not when he is directly near someone's ear. he does that to me when I'm driving and he is sitting up in the back seat, sometimes I have to say, please sit back, you're right in my ear. (I know he should have a seatbelt but when we are just going in the neighborhood, I confess I am lax :huh: )

 

I don't know, but I think that's what I wouldn't mind talking about. What is the line between our children not being able to help their tics (or behaviors) and still being able to teach right and wrong, and at the same time giving them reminders and skills to know how to navigate in public. ??

 

Faith

 

Faith

I was really surprised by this response as it seems to me you may not ever have been in company of someone with severe TS. It may be educational if you went to a TSA meeting in your area to see for yourself what some suffer INVOLUNTARILY.

 

Sometimes, suppression just isnt an option and yes, sometimes with coprolalia the words are very hard to suppress too. That is one of the reasons cognitive behavioral therapy can be helpful in teaching these kids coping skills. But to tell a kid with coprolalia that their "behavior" is inapropriate is like trying to tell a kid with a blinking tic to stop that immediately <_<

A tic is a tic is a tic and just be thankful then that you have never had to deal with the severe or embarrassing ones. Many a kid with a broken heart over being punished, reprimanded or ridiculed for severe tics that they *cannot* help would tell you they would give anything to have "control" over it, and that telling them to stop or drawing attention to it is often the biggest trigger for more.

 

I am so very thankful that my son had an excellent CBT mentor who really helped him, plus that the dietary/supplement modifications have helped so too, but I know that even with training, and all the good stuff we try to implement, it was still very very hard to suppress some things and caused him a lot of emotional trauma when younger.

 

remember too that most of the kids who are in these "documentaries" are likely either on meds (which we saw bring out the worst tics in my son!!) or untreated and possibly eating junk 3 x day etc etc so subject to multiple triggers

 

I guess it takes living with severe TS to fully understand just how hard it really is for some. :(

One of the reasons the TSA is advocating for full disability status for those whose tics are so severe that they seriously impair normal functioning. I thank God daily that my son is no longer in that category....but he was, and tho I havent seen this show, I have a feeling that some of his early tics would have left you in shock.

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<_<

I kind of thought I might not be able to articulate what I was thinking, so let me apologize if that came out wrong. yes, I did not like seeing some of these more severe tics, and in no wy am I suggesting that they can control them, of course not, I know this. However, regarding the part that I mentioned with the girl panning the camera over her sisters chest and saying boobies, somehow it just didn't sound like a tic, it seemed more like she was fooling around. I did also wonder if the multiple drugs these kids have tried did not contribute the their symptoms, for they did say that these kids have tried different meds, and I am again surprised that if they don't seem to help and the symptoms continue to be worse or not exactly for the better, then why do they prescribe them? Aren't there enough negative experiences out there for doctors to feel these kids fare better when NOT on meds? I just don't know. Please forgive me if I sounded offensive, I know the tics cannot be helped, but I have to wonder if some of it does not get out of control because some kids have been left to their own defenses they don't have the help of cognitive behavior or anything along those lines.

 

And when i speak about my own son's irritabilities and behaviors that may or may not be because of some sensory or ocd type feelings, I don't know, I still feel like I need to help him try to function a little better, it IS a challenge, a battle everyday here, I'm just not sure if I can let him rule my roost, so to speak, because sometimes that what he does, and I feel like I would be doing no good to "enable" him that way. And I am not necessarily talking about the tics, more the behaviors. Sometimes he can be snippy with me because he is "irritated" by something I said or if I sing or hum out loud, and he gets all kooky about it. I feel I must reprimand him for acting out, how do I allow him to behave badly toward me, that's not his tic or ocd, it is his RESPONSE or OUTLET to act that way. I tell him he can be irritated, but he should keep it to himself. I am not so sure if he isn't taking advantage and just being poorly behaved. The mom in the show wondered this out loud too (Is it the tourettes or just a kid being a kid having a meltdown?). .....Another example would be that if my son is having a problem with his erasing ocd, his teacher said it was okay if I wrote down some of his work for him while he found the answers. But sometimes he asks me to do this, and I KNOW he is just asking because he is tired and does not feel like doing the work. If I saw he was becoming distressed because of the erasing, I certainly would step in and have done this a couple times, but now that he is writing in pen, it seems to be less of a problem, and so I make sure he is the one doing the work, I don't want him to use me as a crutch. Am I making any sense? Most of you here know me along time on this board, I would never suggest any of this can be helped. But I did not like the way they portray these documentaries, what is the purpose? very frightening to those of us dealing with this.

 

Perhaps my line of thinking and handling my child is very wrong. I would not mind any suggestions on how I could do better re the above.

 

Faith

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I understand Faith and sorry if I sounded upset...I guess I just went thru the pain of this so intensely that it makes me hypersensitive when I think maybe there is misunderstanding of just how involuntary some severe tics are

 

yes, of course there are some who try to milk their condition by using it as an excuse for stuff and yes, as responsible parents we do need to try to impart social skills to deal with this...that is why both my son and I were together often in the CBT sessions so I could learn how to help him cope too

 

not having seen the show i cant comment specifically on the girl filming and saying boobies repetitively but that would be a mix of coprolalia/echolalia if in fact a tic. my son had really bad coprolalia at one point which was awful for us and especially for him. as we dont cuss it was shocking that he even knew some of those words :huh:

even more shocking that he learned them at his private Christian elementary school <_<

thankfully when he started the CBT and he learned substitute words/grunts and really was very good at masking them. But honestly, I saw his struggles and held him when he cried himself to sleep over his helplessless in blurting things out nomatter how hard he tried and learned his biggest heartache was that he felt he was disappointing me and God. I went out of my way to reassure but I know those scars are still there, even tho his life is so much better now

 

anyways, yes, I wish we could educate more parents and doctors about the things that do help....more reason to say kudos to Sheila et al for her book and conferences like the one they just had

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Cheri, could I ask you if your son had some of the more severe tics BEFORE he started on any meds or was this all AFTER, (and during).

 

Just as it pains you to be reminded of what you in fact dealt with in the past with your child, I guess it is the same for some of us, who FEAR what we COULD go thru, you know? I do thank God it has not gotten that bad (altho some days do seem harder than others <_< ).

 

Thanks

Faith

 

p.s. here is one of the comments that was posted re the tourette story on the 20/20 site. just thought some of you might get a kick out of it,...I did. :(

someone wrote:

 

"Was it really the music that triggered the tics at the campfire -or- could it just so happen to be the smores that they were eating? Stop,Look,and Listen."

 

:huh:

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I couldn't help but want to comment on everyone's reaction to the 20/20 show- I think I had seen parts of it before. I am alwys hesitant to watch anything on ts because I know they are going to show the worst cases and not much hope for treatment. I never have my son watch them as it would create terrible anxiety for him, I'm sure.

 

I too am thankful that we have not had to deal with terrible cursing and feel like my son yells "Amen" because it is an acceptable word. I, too, struggle though with knowing how much to help/allow. I think I've probably not been tough enough about homework/ studying in high school because I know he needs to destress and tic after a long school day of holding it in and sometimes I feel like my husband is too hard on him with his tics. The only times I get hysterical are when he is injuring himself or I feel like he might break something. He went through several early teen years picking on his younger sisters until I nearly lost it. So, I do think there are times when we have to demand certain behaviors no matter how difficult.

 

In our case, age has definitely helped as far as being able to discuss the tics and what's going on emotionally. I wish we could see more shows about ts that show cases not so severe and options for treatment. We are already seeing some results from a cleaner diet and supplements after a month.

 

I typed a paper for my son the other night because he is really bothered by computer screens- however, it was only this year (at 16) that he was able to tell me that. I think he made a C or D in a computer class and I assumed it was laziness but I'm now understanding that he just does what he has to do to avoid ticcing sometimes and in that case he was probably avoiding the screen as much as possible. It's really amazing to me when I think of all the coping skills he's probably developed over the years. I pray every day that he is being prepared for a successful future. It's just hard to watch your child struggle in any way!

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Cheri, could I ask you if your son had some of the more severe tics BEFORE he started on any meds or was this all AFTER, (and during).

 

the worst was after starting the meds and during the year he was on them. some of his tics were intense prior (and possibly what some who are used to very mild tics might have considered quite severe) but they were not horribly injurious as they became on the meds and most were the eye blinks/rolls and shrugs, squeaks etc. He had stuff like neck whiplash tic and the teeth grinding and some loud vocals etc. before....scary but not in the same league of horror as what followed starting the meds

IMO the meds are what triggered the severe tourettic OCD as well and that is what turned things into a living nightmare

 

we were med free for the first year after the TS dx then on meds for a year after being bullied by a neuro and psychologist in tandem with the private school he was at

 

within 2 weeks of starting Haldol he was in hospital after repeatedly and uncontrollably biting right thru his lower lip. they strapped him to a bed and IV pumped him full of more haldol and then added luvox to the mix and told me he would probably need to be institutionalized and that the only way to prevent that was more meds. I was so traumatized by what was happening I listened to them instead of following my instinct that the meds were what was causing psychosis and intensifying his tourettic OCD. I am not going to list the self injurious tics that progressed thru that awful year on meds as I dont want to trigger anyone but they were horrific <_< Haldol, luvox, naltrexone and finally zyprexa...from bad to worse side effects

 

I know some probably roll their eyes when I continuously caution on the posts of med use for tics, and I realize some people have been helped by meds.....but I cannot in good conscience stay silent after what happened to my son. I still feel tremendous guilt because I should have known better especially with my own education and personal experience with naturopathic medicine. I allowed desperation to cloud my vision and believed the "professionals" when they told me only meds could help my son.

 

that is why I still come here to try to help. My son has been fine for a number of years now. but if my sharing what helped him can spare just one other child the agony of what he suffered on those drugs.....it is more than worth it!

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Cheri,

Thank you for sharing that. sorry to remind you of all that. but it helps, because my gut has me feeling that its possible that those with more severe symptoms probably occur after some of the anti-psychotic medications are tried, and the doctors probably just add more thinking it is a cooincidence and that is the nature of tourette. do they help anybody? I don't understand how they could not see what was happening and that your son was worse off than before....

 

Well we all know the blessing that came out of all that. <_<

 

Faith

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Cheri,

I just wanted to say thank you for all you do on here. I hate to hear that you still feel guilty about what happened to your son- you did the best you could at the time with what you were faced with. It's amazing to think YOU were the one who turned everything around for him and you had to fight doctors to do that! I cannot begin to imagine the suffering you and your family endured. I don't believe your son could ask for a better mom- you are his angel.

 

Mary

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Cheri,

I just wanted to say thank you for all you do on here. I hate to hear that you still feel guilty about what happened to your son- you did the best you could at the time with what you were faced with. It's amazing to think YOU were the one who turned everything around for him and you had to fight doctors to do that! I cannot begin to imagine the suffering you and your family endured. I don't believe your son could ask for a better mom- you are his angel.

 

Mary

 

I have a question If the meds caused this and i believe they did in dannys case Abilify and seraquel made it worse how do you make it better HOW??? what can we do !!

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Thanks Faith and Tom's Mom :huh:

It is hard to relive it but at the same time brings such relief to see how far he has come! Most people meeting him now dont even realize he has TS.

 

 

 

 

 

Melanie

 

we had a long and hard withdrawal from the meds....titrated down and then many months where withdrawal symptoms still present even tho he was already off the meds. But we persevered and fine tuned the supplements and dietary changes plus regular acupuncture, reflexology and biofeedback detox along with those oh so valuable epsom salts detox baths. Patience, perseverance and prayer were what got us through those months of readjustment..............

 

 

I will never forget the joy I felt when I saw those dull glazed drugged eyes regain their sparkle <_<

 

There is an excellent book by Dr Peter Breggin called Your Drug May Be Your Problem.

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