View Full Version : Parenting Decisions and Tourettes


Efpav
06-06-04, 12:12 PM
After researching TS for some time, I believe my step-son Tommy has a mild form of Tourettes.

When he was a few years of age, and would compulsively mutter the word "Sh*t" or "Sorry" for hours and days, blink constantly, and smack the butts of others, etc... Punishing him for these behaviors was met with limited success, and most would subside over time but resurface occasionally.

His first trip to the neurologist at age 3 we were told he was too young to diagnose. He has not been back since.

Tommy is now 9, and doing quite well. He recently has been exhibiting some complex tics in the form of compulsively saying "mmmm" like clearing his throat. That subsided but he is now compulsively sniffing his fingers. He is aware that he is doing it, but cannot stop. He also occasionally falls into uncontrollable noise making episodes, usually sounding like a chimp, when he has been holding it in for some time or has been under stress.

These behaviors rarely interfere with school and social events.

Now to the questions:

I don't know that an official diagnosis will provide anything other than certainty. Is there a benefit to getting him diagnosed with Tourettes?

I really want to support him the best I can. These complex tics are not catastrophic, but are viewed by most as bizarre behaviors. Should I work to suppress the tics? Should I give him the freedom in non-social settings to exhibit them freely? What about social settings?

Medication (at this point) is out of the question. His level of affliction does not warrant them, in my opinion.

I love him dearly, and really want to support him the best I can. This is why I am writing.

Thank you.

Andrew
06-06-04, 02:32 PM
Aside from (or in addition to) having him evaluated for Tourette's Syndrome, you may want to research his apparent Obsessive Compulsive traits. There is some information on OCD at the ADD Forums: http://www.addforums.com/forums/forumdisplay.php?s=&forumid=54

Punishing a child for an involuntary and currently uncontrollable action seems inappropriate, IMHO. Getting him the appropiate assistance appears to be the next best step.

You should definitely read up as much as you can, print out relevant articles, and bring them to his therapist for discussion.

Efpav
06-06-04, 05:17 PM
I appreciate the reply. I am struggling with the 'suppressing the behavior' piece, and that's my primary reason for writing. He is never truly punished for his behavior, rather told to stop. When it comes to him spanking other people, it is hard to let the behavior go unchecked. Again, it has been somewhat effective, but is it helpful or hurtful?

I will get him an appointment with a doctor. I do not want to stigmatize him with a diagnosis though, since he is mildly affected by it, but perhaps it's me that needs the help more than him...

Andrew
06-06-04, 06:38 PM
So, what's worse...having a proper diagnosis and getting help for it....or not getting diagnosed at all and living with the unchecked symptoms?

Take as much time as you need with his doctor. Ask him as many questions as necessary to get your mind wrapped around whatever your son may have. Research, read, read and read some more. You will likely need to become your son's advocate.

If you need more information, or have unanswered questions in the meantime, please feel free to post them in the Forums!

Piupau
06-13-04, 03:14 PM
Hello Efpav. I'm an adult and I've had TS since I was 4 yo or younger. Don't remember and my parents denied I had problems. Got my dx last year (when I was 26) and all my life became much clearer. I KNEW something was "wrong" with me, but as my parents told me I was normal and just imagined it all it made me feel lika a lunatic. Maybe I was just "sick in my head". Didn't have the guts to see a doc (didn't want a lunatic-lable) until a friend pushed me to do it. I'm very happy your step son has a caring parent like you! ((((HUGS)))) to you! :)

Does Tommy know he has these behaviors? Can he talk about them or does he try to hide them from you?

If you can talk about it, ask him to see if there is a trigger, something that happens in his body (tingeling, unease, tension)or in his environment (sound, motion, ppl's actions) just before he tics. Like the spanking, if it's a feeling or if it's something other ppl do at just that right moment. THAT thing is the trigger, and the trigger is the key to control the tic! If he feels the tic coming he might be able to make a substitute tic indstead, like clapping his hands or something. He still gets that "clapping" sensation" in his palms but he doesn't bother other ppl. And maybe that will give him enough time to pass that person triggering the tic. (one of my tricks to avoid some inappropriate hand tics)

It takes a lot of practice but it can be done if you feel the tic coming.

Your question about if it would do any good to have a dx... I think it can be both good and bad. It can be good when he is older and IF his tics get worse and IF he might need some adjustments in school to make his day easier. Witout dx you will have to fight a lot to get that done. With dx you have on the bad side that ppl don't know much about TS. (You know, the "cursing disease") Ppl might think it is contagesous or that is is less intelligent or less able than other kids. But you can educate school and other ppl around you. Contact your local TS association and they will give you so much info on tourette's you'll drown in it ;)

Also if he gets a dx now you don't have to go through all that process later if he gets worse in his teens, then you already have a doc to contact and everything goes much smoother.
If he is lucky he'll be tic free after his teens, many kids with tics does not have them as adults :) The doc can also say if his behaviours are ocd-related or ts-related.

Good luck with your son!

Efpav
06-13-04, 03:46 PM
I appreciate the insight. The doctor's appt. has been made. BIG had a good point in that having a diagnosis allows for informed decisions rather than speculation.

It's funny, because most people I have spoken with associate Tourettes with the few cases they've seen on the Montel Williams Show. Tommy's symptoms in comparison to those are so mild, that nobody believes it could possibly be Tourettes. I am no doctor, but there are a few too many similarities between some of his compulsive behaviors and the spectrum of Tourettes symptoms.

Tommy can control his behavior to an extent. Asking him to 'stop' doesn't always register the first time, but he does eventually redirect his behaviors. This is mainly true for the monkey sounds and spanking.

The more sublime behaviors are much harder to control. The finger sniffing and grunting are like breathing for him, although some days are better than others. He seems to be able to suppress a lot of it at school, but can erupt when he gets home.

The more stress he is under, the worse it becomes. There doesn't seem to be a precursor to it (other than stress), at least not that I have noticed, and he is not one for sharing what's on his mind.

The diagnosis is more for me than him. I want to understand how to help him. He's a good kid (albeit 9 and leaving his stuff everywhere) and I'm going to match him and try and be a good parent. Even with a positive TS diagnosis, his life would change very little. What will change is how I react to some of his behaviors.

I will let you know what the doctor thinks...

and thanks!

Energizer_Bunny
06-14-04, 02:33 PM
Efpav,

I am glad to hear that you are getting him a diagnosis. I was not diagnosed until I was 36 years old. I wish I knew then what I know now.

I totally disagree with the idea of punishing for him for his behavior. How can someone be punished for something they have no control over?????? The same applies for telling him to stop. It can make things worse and the tics will eventually have to come out but come out even harder. Tommy probably already feels differently about himself and realizes he is different than other children. Self-esteem is a big issue with individuals with TS as well as ADHD, and OCD. And telling him to stop or trying to force him to stop will only make him feel worse about himself. Redirection is the key. I do feel the spanking needs to be addressed. However, you did not go into much detail about that. I am not sure how hard he spanks, who he spanks or when. As a suggestion, if he feels the urge to spank, give him an object to spank such as a teddy bear.

If I may ask on a personal note, as a parent, are you embarassed by his behavior?

Also if I may add, I am not sure what type of doctor you will be taking him too, but I highly suggest a neurologist. And please make sure that the neurologist is highly knowledgeable in the dx of Tourettes.

Pleae keep in touch and let us know how things are going.

Efpav
06-14-04, 03:07 PM
Relax, he is no longer being punished. It was only when he was only a few years old, and when he was chronically cursing. I was not in the picture then, but don't know that I would have handled it differently as most kids go through a cursing phase.

My whole reason for joining this forum is to find out whether asking him to stop was beneficial or detrimental. For the spanking thing, it seems clear this is a negative behavior. But even for the rest, they are out of the norm, and so I am looking for insight on how to approach supporting him. You seem to suggest correcting one and not the other is the way to go. It seems to me that they all fall into the same 'involuntary' category, so why control one and not the other? How can controlling one be negative, yet another be positive???

I am not embarassed by his behavior, because they are typically quite sublime. If he were constantly spanking strangers, I might have a different view on this, but for the most part I accept him and love him for who he is.

The intial doctor's visit is today. The next step may very well be a neurologist. It's up to the primary care physician to ask for a consult, lest we pay out-of-pocket; which I am not opposed to doing, but only if necessary.

I will indeed keep everyone posted.

Piupau
06-15-04, 06:10 PM
The change has to come from your son. He has to be ready to redirect his tics. Like I said about the spanking thing, if he feels the urge do spank someone he could clap his hands hard and turn around so he doesn't see the "tic-trigger". Hands are good, they're always with him and he can't forget them anywhere ;)

If you or someone else tell him to stop something he can't he will feel very bad about it and himself. I think it's great that you'll see a doc! There will be teachers and other ppl who don't know what TS is and that's why it is good that you go through this. Not just for you, It's just as much for him.

What happens if you control all you tics and don't let them out. Be like other "normal" ppl? I controlled my tics very good as a child because I got beaten and threaten about it at home. It ended up bad. I got depressed and almost commited suicide a couple of times before I was 18 yo, I got gastric catarrh and almost an ulcer and I had frequent bad head aches, skipped school a lot so that I could be alone at home when my parent were at work. It was because I had all this tension in my body all the time that I could not release anywhere but when I was alone or when I couldn't stop it and then I was punished.

If it's TS he has remember that tics he's had once might return! Tics come and go, change and reappear.

Energizer_Bunny
06-16-04, 09:22 AM
Efpav

I apologize for not understanding you correctly. I know that you are trying to do what is best and I sincerely believe you are doing a wonderful job.

I guess as far as what I could call redirecting one tic and not the other all depends on the severity of the tic and how it would effect his social skills, school etc. I have tics, that I have to redirect, hold back, or try and not do the tics as hard, if not I could end up in a car wreck because my head goes down and I close my eyes and contract muscles until it feels just right. Where some tics that I have while driving or okay to have because they do not effect the driving.


Another example for me is a compulsive behavior that I do that is very embarassing. I pick my nose and I am about to be 42 years old. So picking my nose is not acceptable social behavior, however, if I felt the urge to blink or shurg my shoulders, it is different. Picking my nose in public is not. And trust me, to try and not do that is very hard. So to redirect it until I can get to a private place, I feel like "Bewitched" when she wiggles her nose all the time.

Piupau, I am so sorry for what you have been through in your past. I was blessed. My tics as a child were minor other than the rocking behavior. The only one I remember my parents addressing was the constant blinking I did. I recall them saying she is just doing it for attention. If you quit telling her to stop, she will because she will no longer be getting the attention she wants. I eventually stopped because tics wax and wane. I am just wish I could hug you and make it go away.

Most specialist believe that as you get older your tics will become less severe. For me, it was opposite, they got worse. I know a few other individuals who are TS and their tics worsened as they got older.

Efpav
07-02-04, 12:40 AM
The pediatric neorologist was backed up until January, but we got lucky with an appointment almost a week after we called.

Diagnosis was positive for Tourettes, although the doctor didn't really put much effort behind it. He seemed pretty convinced after hearing of the compulsive behaviors. I figure the guy can't be wrong after probably seeing thousands of patients over his career.

He prescribed Tenex. We are leaving it up to Tommy to decide whether he wants to take it or not. I think he is leaning towards giving it a try.

We are just happy to be able to support him knowing that he has Tourettes...

Piupau
07-02-04, 03:31 PM
I'm happy for you! Now you all have a name for it. Read about Tenex on internet or in a medical book before you use it. There might be unwanted side effects. It's always good to know what MIGHT happen and if you can live with the side effects for a while or not.

Energizer_Bunny
07-09-04, 08:59 PM
Let me know how the Tenex works out. Everyone reacts differently to meds and I tried Tenex and was totally exhausted all the time. Just an FYI.