I'm New and I think my son has Tourette Syndrome

[kilam]

Hi good night,

 

I have been surfing this board for about 2 months. I had hoped I wouldn't have any reason to post but after today, I realize I needed to know all I can. My name is Jackie and I have a wonderful little 7 year old boy... Last year, I notice my son blinking his eyes a lot. He was unable to control them. Then this year about a month into second grade, I notice he started having facial movements. Then about a month ago, I notice his head started to shake. His head shaking doesn't happen all the time....These movements have not disrupted his schooling in anyway.. He is an A and B student..I spoke to his teacher and she says his movement is not any more unusual than any other child and he does not have ADHD. I also took him to the doctor and he thinks it stress..At first I thought it was but now I know it’s not..My son has adjusted to 2nd grade and he is very happy..

I’m writing you because today I got really scared when he asked me if he could shake his head..It wasn’t dramatic but the fact that he asked made me think he needed to do it..He shook his head 3 different times. Each time it was a back and forth movement..No-one in my family have TS that I know of..Please tell me if you think he has TS and what do I need to do now..

Thank you,

 

A very scared mom

[patty]

Jackie,

 

I am glad you started posting on this forum. I was just like you. I found this forum about 2 months before i did any postings because frankly, it is a very emotional thing for me to talk to about. I read Sheila Roger's book about 3 months into my son's sudden onset of head nodding tic, and i surfed this forum for a couple of month before posting.

 

In retrospect, i wished i did it sooner because i got so much support and info.. Also, it helps to know that i am not alone with this issue with my son. I felt isolated and hopeless. I can truely so, it was my darkest days.

 

When my son first started his acute head nodding tic, i fell to pieces when he asked me with those innocent eyes, "why can't i control my head?" and he said, "it is hurting me, mom." I still cry when i think about it.

 

Jackie, as i have written in my previous post, don't worry about the TS dx. When you are using alternative treamtent, it doesn't matter rather it is a tic or TS. Initially i was concern of the TS dx because the media sensationalizes TS with alot of negative connotation. The stress of thinking it is TS was enough to break me down emotionally. I guess what i am saying is, treat the symptoms.

 

Here is a suggestion, when my son first had the head tic. I took him to an acupuncturist to calm the nerves and chiropractor to realign his neck and pain. And i saw a reduction in frequency and jerkiness after about 2 sessions.

 

Since you mentioned he tics more while watching TV and video game, eliminate that for about 7-10 days. In the mean time, give him epsom salt bath. 2 Cups per bath, once a day for at least 20 minutes. And be sure to drink purifier water AFTER the bath. This is important because it helps the body to detox. In addition, try to drink lots of purified water thru out the day. My son responses well to it.

 

Please keep asking and let me know how your son is doing.

 

Patty

[kilam]

Hi Patty,

 

I just wanted to say thanks..I need all the support I can get because as you said sometimes you feel isolated and hopeless.. I have a wonderful son who has gone through a lot already and whatever I have to do I will start today..

 

I will be posting at least once a day just to say hi..

 

Thanks again,

Jackie

[Chemar]

hi again Jacki:)

 

I just posted a reply to you on the other thread here that you had posted on

http://www.latitudes.org/forums/index.php?showtopic=2063

 

ps just an addendum....you say nothing of your son having any vocal tics? Highly unlikely that he has TS if there are no vocal tics along with the motor tics

[kilam]

Thanks Cheri, I really needed to hear that

[patty]

Chemar,

 

Isn't you can have vocal tic and not have TS? As i understand, transcient tic consist of both components. For someone to dx with TS, don't you also need the dx of other neurological issues, such as ADD and/or OCD, etc.... ?

 

Patty

[Chemar]

no Patty...many people have TS and have absolutely NO other neuro issues other than TS tics.

 

and yes, vocal tics can occur with other tic disorders, but it is usually the ONE YEAR criterion that distinguishes TS (ie vocal PLUS motor tics present for at least one year)

even then, I am always hesitant about the TS dx when there isnt a genetic link

[Cum Passus]

Jackie,

 

So glad you are here with us. I too waited almost a year before I hopped on board.This has been the most trying time in my life. I have been blessed with 3 really great kids and this really messed with my mind. I thought this would change them, but the girls are so sweet to their brother. I really can't get over how they can play with him while he is yelling in their ears. They really put me to shame, because I can't take it as long as they can. Your in our thoughts.

 

Patty & Chemar,

My son had only movements in the early days so mild that we didn't know he had TS. My question is can you have one motor tics first (longer then a year) then get the vocal later, say when their body is changing?Because that is what happened to him. My son still has very minor motor tics, and as far as I can tell he doesn't have ocd or add/adhd so we can hope that he only has TS. Should we be looking out for a possible ocd? Something that might show up later?

 

Thanks,

C.P.

[patty]

Chemar,

 

Thx for the TS clarification, but i am still confused?!

 

My son has both motor and vocal, but we have no one in the family with TS. So if his tics meet the 1 year criteria, does that means he has TS??

 

Also, if someone have genetic link to TS, does that mean it is not curable? Whereas someone who has tics due to allergy issues are easier to treat??

 

I am confused as to why there are so many labels for tics? Especially the one year rule. Why not 2 years?? I kinda look at it as all the same. I think that when you start labelling tic, it just add more stress to the parents ( i have been there ).

 

I am very upset that the media sensationalized TS and bring so much negative attention to it, and emphasis the most extreme cases. This is one illness that deserves much education to the public, and that people with TS or tics are more common than you know and that many have happy and productive lifes!!

 

Patty

[kim]

Patty....and Welcome Jackie and Lenny!

 

A "diagnosis," was really important to me, in the early days too. Now, the only real value that I see in it, is ruling out any other physical problems or disorders.

 

Once a neurologist realizes that you probably know more about tic disorders than they do ( I say this from my experience, hopefully, it's not true in all cases) you are much more likely to have your opinions respected.

 

 

I guess if you read this, you could pretty much, give your Neurologist the diagnosis. You are really in a better position to diagnose anyway, if it's TS or a tic disorder, since you are the one doing the observing in everyday situations.

 

 

http://www.emedicine.com/NEURO/topic664.htm#targetG

 

Two case definitions for TS are accepted widely: the DSM-IV-TR definition, which is widely used in the US for clinical purposes (see the DSM-IV-TR criteria for tic disorders below), and the TSSG definition (see TSSG criteria for tic disorders below). Experts identify similar groups of patients by using either set of criteria.

 

DSM-IV-TR criteria for tic disorders from the American Psychiatric Association, 2000

 

Diagnostic criteria for TS (DSM-IV-TR 307.23)

 

Both multiple motor and 1 or more vocal tics have been present at some time during the illness, though not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)

 

The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.

 

The onset is before age 18 years.

 

The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis).

Diagnostic criteria for chronic motor or vocal tic disorder (DSM-IV-TR 307.22)

 

Single or multiple motor or vocal tics (eg, sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalizations), but not both, have been present at some time during the illness.

 

The tics occur many times a day nearly every day or intermittently throughout a period of more than 1 year; and during this period there was never a tic-free period of more than 3 consecutive months.

 

The onset is before age 18 years.

 

The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis).

 

Criteria have never been met for TS.

Diagnostic criteria for transient tic disorder (DSM-IV-TR 307.21)

 

Single or multiple motor and/or vocal tics (eg, sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalizations) are present.

 

The tics occur many times a day, nearly every day for at least 4 weeks, but for no longer than 12 consecutive months.

 

The onset is before age 18 years.

 

The disturbance is not due to the direct physiologic effects of a substance (eg, stimulants) or a general medical condition (eg, Huntington disease or postviral encephalitis).

 

Criteria have never been met for TS or chronic motor or vocal tic disorder.

 

Specify if this is a single or recurrent episode.

Tic disorder not otherwise specified (DSM-IV-TR 307.20): This category is for disorders characterized by tics that do not meet criteria for a specific tic disorder. Examples include tics lasting less than 4 weeks or tics with an onset after age 18 years.

TSSG criteria for tic disorders, 1993

 

Diagnostic criteria for TS (coded as A-1 or A-2 depending on source of information)

 

Both multiple motor and one or more vocal tics have been present at some time during the illness, though not necessarily concurrently.

 

The tics occur many times a day, nearly every day, or intermittently throughout a period of more than 1 year.

 

The anatomic location, number, frequency, complexity, type, or severity of tics changes over time.

 

Tics have their onset before age 21 years.

 

Involuntary movements and noises cannot be explained by other medical conditions.

 

Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (for definite TS, A-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by reliable examiner (for TS by history, A-2).

 

Diagnostic criteria for chronic multiple motor tic or phonic tic disorder (B-1 and B-2)

 

Either multiple motor or vocal tics, but not both, have been present at some time during the illness.

 

The tics occur many times a day, nearly every day, or intermittently throughout a period of more than 1 year.

 

The anatomic location, number, frequency, complexity, or severity of tics changes over time.

 

Tics have their onset before age 21 years.

 

Involuntary movements and noises cannot be explained by other medical conditions.

 

Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (for definite chronic multiple motor tic or phonic tic disorder, B-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for chronic multiple motor tic or phonic tic disorder by history, B-2).

 

Diagnostic criteria for chronic single tic disorder (C-1 and C-2): This disorder is the same as in the previous category (B-1 and B-2), but with a single motor or vocal tic.

 

Diagnostic criteria for transient tic disorder (D-1 and D-2)

 

This disorder is characterized by single or multiple motor and/or vocal tics.

 

The tics occur many times a day, nearly every day, for at least 2 weeks, but for no longer than 12 consecutive months, although the disorder began over 1 year ago.

 

The anatomic location, number, frequency, complexity, or severity of tics changes over time.

 

Patient has no history of TS or chronic motor or vocal tic disorders.

 

Tics have their onset before age 21 years.

 

Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or be recorded by videotape or cinematography (definite transient tic disorder, D-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for transient tic disorder by history, D-2).

 

Diagnostic criteria for nonspecific tic disorder (E-1 and E-2)

 

Tics that do not meet the criteria for a specific tic disorder fall into this category; an example would be a tic disorder with tics lasting less than 1 year and without any change over that period of time.

 

Motor and/or vocal tics must be witnessed by a reliable examiner directly at some point in the illness or by videotape or cinematography (for definite nonspecific tic disorder, E-1) or (for tics not witnessed by a reliable examiner) tics must be witnessed by a reliable family member or close friend, and description of tics as demonstrated must be accepted by a reliable examiner (for nonspecific tic disorder by history, E-2).

 

Diagnostic criteria for definite tic disorder, diagnosis deferred F: This disorder meets all criteria for definite TS (first definition, A1), but duration of illness has not yet extended to 1 year.

 

Diagnostic criteria for probable TS type G

 

Type 1 fulfills all criteria for definite TS (first definition, A1) except for the third and fourth criteria.

 

Type 2 fulfills all criteria for definite TS (first definition, A1) except for the first criterion; this type can be either a single motor tic with vocal tics, or multiple motor tics with possible vocal tic(s).

 

Diagnostic criteria for probable multiple tic disorder, or motor and/or vocal tics H: This disorder fulfills all criteria for definite chronic multiple tic disorder (second definition) completely, except for the third and/or fourth criteria.

Physical: An important caveat is that many patients with tics may not demonstrate them on their first office visit, especially when one is looking directly at the patient. In such cases, important aids to diagnosis can include obtaining the patient's history from several sources; scheduling follow-up office visits; and, most importantly, assigning the patient (or his or her parents) to bring a home video to show their behavior. Learning to watch the patient out of the corner of one's eye while speaking with a family member or writing in the chart is also helpful.

 

The remainder of the physical examination is important primarily for differential diagnosis. Special attention should be paid to the patient's mental status, cornea (Kayser-Fleischer rings), eye movements, abnormal movements, muscle tone, gait, postural stability, and bradykinesia or tremor if any. General neurological and psychiatric examinations are also important.

[Chemar]

Patty

most cases of Tourette Syndrome are genetic ie a family history of TS

 

there are however also cases that do not have an obvious family link and there it is believed that the genetic and/or physiological mechanisms that control TS may become switched on by other internal or external triggers, many of which are discussed on this forum and in Sheila's book

 

there are other tic disorders that exhibit both motor and vocal tics, and there are therfore many labels for these tics...just as there are many labels for all the wide variety of other disorders and diseases that people have!

 

Because of clinical observation, the main diagnostic criterion for a TS diagnosis is one year of exhibiting both motor and vocal tics that characteristically wax and wane. That seems to be the most consistent and reliable diagnostic method. It doesnt mean it is error free, just the best they have at present

 

one day there will likely be a way fo genetic screening to dx inherited TS

 

When there is no genetic root, I would agree that to dx someone with Tourettes after one year of symptoms may well be erroneous, but that is how the medical profession does dx it

 

however, when there is a family history of tics OR some of the other neurological conditions that can be co morbid with TS, then a Tourette diagnosis is usually accurate

 

there is (as yet) no "cure" for genetically inherited Tourette Syndrome, although as my family and many others have proven, it certainly can be helped without medications to become less intense.

 

For us, actually getting the TS diagnosis was in fact very liberating, as it not only explained what had happened to our son when he began ticcing, but also gave insight to my husband on his own intense childhood tics and explained a lot about the vocal outbursts and movements his own father had. It also helped me to understand some of my husband's existing movements and noises. And with that knowledge also came empowerment, as it gave direction in how to make life better for my guys

 

As a mother and wife, I personally get jarred by the fear that I hear expressed by many about a TS diagnosis. I understand the concern...I felt it myself....but the fear is IMHO really blown out of proportion to the reality

 

My husband and son are both wonderful, loving and compassionate people who have very high IQ, are top achievers, multiple talented, and most certainly live full and productive lives....they just happen to tic.

 

I learned a number of years ago that their tics are part of them and, where I do my part to provide them both with a diet, supplements and an environment that helps to keep their tics from interfering with their lives........

yet they tic. Period. It doesnt define them, but it is a part of who they are. And I and they and our family and friends not only accept that....we barely notice it, and in fact some of their tics are endearing aspects of them!

 

It is genetic, and maybe one day in the not to distant future their will be a cure...but at this time there is not.

 

Only many ways to make it easier for them.

 

And one of the best ways is my loving acceptance that for them to tic is an inherent and NECESSARY action...it brings them a release in their neurological systems.

 

They have a TS "label" and are not ashamed or afraid of it, and neither am I

 

and yes, the media (and most people) tend to focus on the extreme aspects of TS...but then they do that with most stuff dont they.

 

Anyway, sorry to ramble on, but that is my perspective on being wife to a husband and mother to a son with genetic TS

 

***************************

Cum Passus

it has been found that many of the symptoms of TS and the conditions which can be (but are not always) associated with it, can manifest as puberty progresses and in general, things tend to taper off when the hormonal years are passed.

The one year criterion is a clinical one and so not a hard and fast rule...as we have all discovered, people are uniquely different and manifest things according to their own biological makeup

 

again, I would emphasize my own belief that the only truly accurate TS diagnosis is when there is a family history of tics, OR the known neurological disorders that can accompany TS, like OCD

 

when this genetic link is absent, I tend to personally feel that the likelihood of TS is VERY MUCH diminished, and that some other mechanism is likely at work, wither internally or environmentally, to trigger the tics.

 

*****************************

 

Jackie

I am so glad that you have ordered Sheila's book because I feel it will give you so much insight into what the possible causes are for your son's tics

 

just remember, whether it is TS or transient tics, or tics induced by infection, allergy or environmental factors.....the more your child is aware of your focus on the tics, the harder it is for them and the more they can be psychologically impacted,.

I know it is very hard to do...but try not to let him know you are concerned about his head shaking or any other tics that may emerge. Just observe casually and keep your own records, but dont keep asking him why he does it, or how it makes him feel etc etc

I say this from my own bitter experience as in the beginning I made things a whole lot worse for my son by being obsessed about his every tic and so caused him unnecessary stress and therefore more tics

I will never forget the day he came to me and gave me a hug and told me how much he appreciated that i had accepted his tics and wasnt always talking about them and trying to "fix" him...........

It also opened a new phase where he became a partner in being careful with diet and taking his supps etc, because he knew it helped...........but knowing that it was no longer frantic mom trying to cure him

 

wow....I am in a rambling mood today arent I...........but I hope that all I have written here will maybe help to bring things in focus for others.

 

[kilam]

Hi guys,

 

I just wanted to say thanks for all the information and encouraging words...I will go back to my doctor and explain to him all I have learned and make sure he refers me to a neurologist...Cheri I also want to thank you for you personal feelings...After reading what you wrote about your son and husband I felt a sense of calm..I know I will still have anxiety when I see Malik shake his head but at least I know that one day it'll be unnoticeable...I especially love when you said, "My husband and son are both wonderful, loving and compassionate people who have very high IQ, are top achievers, multiple talented, and most certainly live full and productive lives....they just happen to tic.

 

I learned a number of years ago that their tics are part of them and, where I do my part to provide them both with a diet, supplements and an environment that helps to keep their tics from interfering with their lives........

yet they tic. Period. It doesn’t define them, but it is a part of who they are. And I and they and our family and friends not only accept that....we barely notice it, and in fact some of their tics are endearing aspects of them!" Those words were very comforting to me...

 

Yesterday, was the first time I saw my son tic through out the day..It started in the afternoon and it happen in intervals until bedtime.. By the end of the day he was able to tic in front of me without feeling self-conscious.....Malik tics are mild and I know they can get worst but I feel my anxiety will pass and I'll be able to deal with it better without hiding in the bathroom and crying...I guess it's harder on me because I'm a single mom but I do have great family and friends who will support us in anyway..

 

I have a question about the vocal tics..I'm not sure what to look for..My son does make noise and now that I know he has tics how can I weed out a vocal tic?

 

Thanks again,

 

Jackie

[Cum Passus]

Jackie,

 

I can really relate to the crying in the bathroom. It has taken me almost a year to get past some issues. It really helped me to talk to everyone we had contact with. Parents on my sons baseball team were so understanding. His coach even cried when I told him. I found people at church who had grown children who had TS, and they were a real comfort. Even a neighbor who's older son has it. Talking about it really helped me alot, but I would still have moments when crying seemed to be the only thing that would help. About the vocal, my son didn't have any until he was 10 or 11 and then it was only a kissing noise. He would do it so far apart from each other that we thought it was just something he liked to do once in awhile. Then when he was 12 it became huh huh ... now it is words and shouting and he even screemed. My husband had Ts and he said for him he liked the sound or feeling of a noise. He does think they change into other things but he said it had to be something he wanted to do, his parents didn't have any luck making him change.

 

Hope that was of some help.

C.P.

[patty]

C.P.

 

You said your husband had TS. Does that mean he doesn't have it anymore? Did he have both vocal & motor? Did his symptoms subside on its own or he had medication?

 

Please forgive me if i asked you this already. I have a hard time tracking who said what and what i have asked.

 

Sounds like you have really come to accept your son's condition and that you are adjusting well. It is so good to hear that you have so much support around you.

 

BTW, is your son responding to alternative treatment? If so, can you give me some information.

 

Patty

[Cum Passus]

Patty,

 

My husband's TS started out motor then became vocal. He doesn't have any motor tics now and the vocal really isn't there. It is hard to tell because he clears his throat or says a word and it is just like anyone doing that. He uses the word buddy so it sounds like a term of endearment. Kind of when you hear people say (like) all the time, but my husband will ony say it maybe three times in a day. That is why it is hard to tell if he really wanted to say buddy or was that a tic. Thanks for asking about my son he is still yelling, but the screeming has stopped. I think the meds are working for some of the vocal. I feel like I have him at a point where I can tell if some vit. will help or not. He did react to the fish oil. I alos think maybe even mag/tar. so I am doing the mag in a powder. Just started that last week, and he got sick this weekend and he has been so quite. Yesterday I only heard him once all day, even when it got late he never said a word. I guess not feeling well has stopped them for awhile. He is home today from school and I have noticed a couple come out. Strange isn't it? I have been thankful for the peace. Last year at this time it was sooooooooo bad and I thought life was over. I have heard alot of stories on the radio of families who are going through tough times, and I know TS is a small problem compared to what some people have to go through. I know I'm big on poems, but they really help me

This is a great one.

 

HIS PURPOSE

 

The shuttles of His purpose move

to carry out His own design.

Seek not too soon to dispprove

His work, nor yet assign

dark motives, when with slient tread

you view some somber fold,

for lo, within each darker thread

there twines a thread of gold.

 

Spin cheerfully, not tearfully.

He knows the way you plod.

Spin carefully, spin prayerfully,

but leave the thread with God.

 

Author unknown

 

Thanks for letting me share this season of our lives with all of you. You all are a huge help.

Blessings C.P.