8 year old - what to expect?

[jdmom]

Hello,

My son is 8 1/2 and was diagnosed with TS a year ago. The tics came out of the blue as soon as he turned 6. It was easter morning and his shoulder/neck kept moving. Remembering learning about TS in college, my heart fell and crashed into a million pieces that morning.

 

So far the tics have been relatively mild. Head and shoulder jerking mostly. Sometimes a mouth stretch or blinking. I've noticed a finger stretch thing occasionally too. He has had vocal ones too, although he hasn't for a while. Those are typically throat clearing or a low humming sound.

 

Okay, so after 2 1/2 years into this thing, I still haven't accepted it. I don't know what to do to deal with it more...maturely? I don't know but I do know I have a lot of fear. I'm sure you all know where I'm coming from.

It has actually taken me this whole time to even read the posts on this site, at least I'm coming out of denial.

 

1. Our neurologist said that the tics typically peak around 10-12 years old and then by about 18-20 calm down to where they were at about 5 years old. She also said "there is no way to predict". Okay, so does anyone have any experience with a child "growing out of" tics after childhood?

 

2. If his tics were going to get severe and complex, would they by now? Or is it still a total wait and see with this?

 

I want my son to feel unconditionally accepted and loved. I think this is more my problem than his at this point and I need to be strong for him. Fortunately, he has a great dad who stays positive, strong and calm about it.

 

One last thing, my son is a very excitable child. When he gets excited he tics even more which makes me want to tell him to calm down. Of course I don't want to spoil his good mood. Will this calm down as he gets older? Seriously, if he's just telling me about something he's excited about, it just revs everything up.

 

I appreciate your comments and insight.

[lola]

Hello,

My son is 8 1/2 and was diagnosed with TS a year ago. The tics came out of the blue as soon as he turned 6. It was easter morning and his shoulder/neck kept moving. Remembering learning about TS in college, my heart fell and crashed into a million pieces that morning.

 

So far the tics have been relatively mild. Head and shoulder jerking mostly. Sometimes a mouth stretch or blinking. I've noticed a finger stretch thing occasionally too. He has had vocal ones too, although he hasn't for a while. Those are typically throat clearing or a low humming sound.

 

Okay, so after 2 1/2 years into this thing, I still haven't accepted it. I don't know what to do to deal with it more...maturely? I don't know but I do know I have a lot of fear. I'm sure you all know where I'm coming from.

It has actually taken me this whole time to even read the posts on this site, at least I'm coming out of denial.

 

1. Our neurologist said that the tics typically peak around 10-12 years old and then by about 18-20 calm down to where they were at about 5 years old. She also said "there is no way to predict". Okay, so does anyone have any experience with a child "growing out of" tics after childhood?

 

2. If his tics were going to get severe and complex, would they by now? Or is it still a total wait and see with this?

 

I want my son to feel unconditionally accepted and loved. I think this is more my problem than his at this point and I need to be strong for him. Fortunately, he has a great dad who stays positive, strong and calm about it.

 

One last thing, my son is a very excitable child. When he gets excited he tics even more which makes me want to tell him to calm down. Of course I don't want to spoil his good mood. Will this calm down as he gets older? Seriously, if he's just telling me about something he's excited about, it just revs everything up.

 

I appreciate your comments and insight.

 

Hi there, I think we are at the same stage with the whole acceptance thing. My son was diagnosed a few weeks ago, we knew he had little "habits" for a couple of years now but they didnt seem that bad until a recent holiday to the US,they went crazy, this had led to his diagnosis. I couldnt accept it at all and I can honestly say its only this week it has sunk in. I spent the last 2 weeks crying, I stupidly went on to youtube to see if i could find a documentary about tourettes i had read about, this was the worst thing i could have done because i ended up watching loads of clips of people with really severe tics and it absolutely terrifed me, i was histerical and my partner had to come home from work. that was the lowest point for me.

 

I'm sorry i cant answer any of your questions because it is all so new to me, but some people on ths forum have given me some fantastic information, they have lots of experience on the condition. I met with a family friend the other night, she is a head mistress of a local school,she advised me that the condition is more common that people think and that she has 4 kids in school with the condition, mostly it goes un noticed the kids function the same as the other kids. We have to remember that our sons are the same little boys they were before we knew what their diagnosis was. I keep reading that 50% of kids can grow out of it, so i keep focusing on that, if he doesnt grow out of it then we will hopefully know by then all the major triggers and he will be old enough to know what he can and cannot do. my little boy gets really excited too and this is when he tics the most, he can be fine and then he starts talking about our holiday to florida and all the different rides he went on, he tics like mad. i thought he was doing this because his tics were bad on holiday and when he talks about it he remembers how bad he was on holiday. however i think it is just excitement.

 

If you read my thread "my little boy diagnosed with TS" posted earlier this week you can see all the replies and the suggestions for supplements etc. we have had our son on supplements for 3 weeks now and have made big changes to his diet and the change has been quite remarkable.

 

I know exactly how you are feeling, but you will get better, i didnt cry yesterday so that was a step forward for me.

 

Lola x

[ilovedogs]

Hi Jdmom, welcome to the boards. My son started tics the day after he turned 9, which was a little over 2 years ago. And, yes, I'm still in denial, LOL! His tics are mostly facial tics like eye blinking, squeezing both eyes shut or winking. He's had a jaw tic, and a hair tossing tic when his hair was longer. He has lots of compulsive-like tics that he can actually stop doing if he puts his mind to it like smelling his fingers, picking his nose, etc. It's like they're little habits he starts and once I ask him to stop, he can. Anyway, our big problem is anxiety which increases the tics when his anxiety goes up. He also tics more when he's stressed(both good and bad stress).

 

I know of people whose children stopped ticcing right after puberty. If you read some of the stories here on the boards you will see a lot of different stories. If you have any questions please feel free to ask us. Many of us are in the same boat as you and I'm sure it will comfort you to know you are not alone. Hang in there!

 

Bonnie

[dcmom]

Okay- I know nothing about TS- but stumbled upon this post. My daughter has pandas. Have any of you explored that as a possible cause of your child's tics? Hopefully a more experienced TS parent can chime in, as I know quite a bit about pandas, but not about TS...

[CSP]

Welcome, jdmom,

 

I was wondering if you had a family history of TS.

 

My son now 16yo exploded at 12yo with screaming like you wouldn't believe. I was a mess for a year and then started to take another year to pull myself out of it. Part of my problem is Pride I would have thought God had blessed me with the 3 best children in the world and thought it was my parenting skills that kept them in line. They just alwys listen and never had fits about anything. Well when my son would not stop screaming I thought I would pull my hair out. I could not believe he could not stop. It took a long time for me to back off and I still struggle with that sometimes. Like you, my husband is a rock, and he has been the one I turn to.

 

I hate the thought that every time he makes noise it is just a reminder I have not stopped this for him. I spend a lot of time praying and God always give me the grace I need to keep plugging along.

 

Now about your question my son does not scream anymore and the vocal tic is all he has. so I would say as bad as he was to how good he is today, yes they do get better as they get older.

 

I hope this was helpful to let you know I'm right there caring my cross with ya. Sometimes we just need a Simon to help when it gets to heavy, and this place is just the Simon you could be looking for.

 

CP

[laurena82]

Hi JDmom:

 

Okay, so does anyone have any experience with a child "growing out of" tics after childhood?

 

Yes, yes and yes !

 

Not only that, but by age 18-20, he had WAAAYYYY less tics than at age 5...in fact, I never see any anymore (he's 24 now).

 

I posted a bit of history on Lele's thread back on Sept 5 and 6:

 

 

http://www.latitudes.org/forums/index.php?...=5176&st=15

 

 

 

Our neurologist also said many kids "outgrew" it during adolescence....and, I also thought he didnt know what he was talking about.....but, I am so happy he was right!

 

 

I think he quit the catapres by about his freshman year in HS...and really didnt have any tics to speak of ...and, like I say, none that I notice now.

 

He also had a huge problem with stuttering....which is considered a "vocal tic", but when I found a different speech therapist at about 5th grade level....within a year, he was quite fluent.....and he has no problems with that anymore, either.

 

 

{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}} and best wishes! I am so glad there is this message board for moms to get support at these days!! !! !!

[mar]

Hello,

My son is 8 1/2 and was diagnosed with TS a year ago. The tics came out of the blue as soon as he turned 6. It was easter morning and his shoulder/neck kept moving. Remembering learning about TS in college, my heart fell and crashed into a million pieces that morning.

 

So far the tics have been relatively mild. Head and shoulder jerking mostly. Sometimes a mouth stretch or blinking. I've noticed a finger stretch thing occasionally too. He has had vocal ones too, although he hasn't for a while. Those are typically throat clearing or a low humming sound.

 

Okay, so after 2 1/2 years into this thing, I still haven't accepted it. I don't know what to do to deal with it more...maturely? I don't know but I do know I have a lot of fear. I'm sure you all know where I'm coming from.

It has actually taken me this whole time to even read the posts on this site, at least I'm coming out of denial.

 

1. Our neurologist said that the tics typically peak around 10-12 years old and then by about 18-20 calm down to where they were at about 5 years old. She also said "there is no way to predict". Okay, so does anyone have any experience with a child "growing out of" tics after childhood?

 

2. If his tics were going to get severe and complex, would they by now? Or is it still a total wait and see with this?

 

I want my son to feel unconditionally accepted and loved. I think this is more my problem than his at this point and I need to be strong for him. Fortunately, he has a great dad who stays positive, strong and calm about it.

 

One last thing, my son is a very excitable child. When he gets excited he tics even more which makes me want to tell him to calm down. Of course I don't want to spoil his good mood. Will this calm down as he gets older? Seriously, if he's just telling me about something he's excited about, it just revs everything up.

 

I appreciate your comments and insight.

\

 

Yes my ds son tends to get really excited too and always tics more during that time. It happens the most during stress and excitement. My dh has TS and I never see him tick much. It does happen when he is stressed but never lasts very long and he tells me that he can control it to a point. I guess learning about ds and about himself (he never knew their was a name for what he has) he has ticed more lately but like I said it is not as much as ds. I think I stress him out by talking about it too much but sometimes I need someone to talk to. Once I let it go for and don't mention something he is fine. I know how you feel, I also cryed and was in a daze for a good two weeks. I have finally accepted it (at least I think I have) and am able to proceed. It's just so heart breaking when you can't help them stop.

[faith]

laurena,

did you son have any other issues growing up? any comorbid issues? would you say he outgrew them as well?

 

 

thanks

Faith

[laurena82]

laurena,

did you son have any other issues growing up? any comorbid issues? would you say he outgrew them as well?

 

 

thanks

Faith

 

You mean like OCD? no, he didnt have that. He DID have some ADD tendencies....particularly the "distractiblity" part.......I'd say he outgrew that as well, though.

 

His main issues were motor tics, and vocal tics. And the most distressing of the vocal tics was the stuttering, which was very severe. It still amazes me how he's completely fluent now.

 

The motor tics were probably worst around age 6 - 11, I think.

[jdmom]

Hello,

I want to thank you all for taking the time to hear my story and share your experiences and support. It does feel so much better to be connected to others who are going through or have gone through this.

 

Laurena, you mentioned your son was off catapres by freshman year. When did he start taking it and what were the side effects? Our neurologist says she treats the child, not the parents and if he's doing fine, there is nothing to treat. Now I respect this and agree completely, but I also don't want my son to start getting teased and have this become a real issue for him before we would turn to medication. I also wouldn't want him to be so mellowed out that he isn't able to stay engaged in his studies. I would love to hear your opinion on this.

 

Mar, what do "ds" and "dh" stand for? I must be missing something!

 

CP, to answer your question, we do not have any family history of TS. This just came out of the blue and hit us like a ton of bricks. My daughter is 5 1/2 and she doesn't have any signs of this. I can tell you my son has always been a more anxious child than her and is intense/high strung.

 

My son's best friend who lives nearby has a stutter. I've read that stutters are also a neurological condition. It makes me wonder if there could be an environmental factor. Another thing, when we went on a vacation last winter to my mother-in-law, she lives in a forest basically, far from the city and his tics stopped pretty much completely while we were there. I was so baffled by that. It made me feel hopeful that perhaps this could all go away some day. I can't believe this waxing/waning business. There has to be something causing it. I don't understand why the doctors don't tell you do anything about the diet/supplements, etc. Do they really work and why does everyone think they don't say anything about these? We will try the dietary changes & supplements although I know it's going to be hard. He has such a sweet tooth!

 

Has anyone tried acupuncture? I've heard it is helpful for anxiety which is sort of related.

 

Here is an interesting story. When I first learned that my son had this, I was not comfortable telling anyone (because that makes it more real!). I decided to tell a friend and amazingly, she told me her son has the same thing! I almost fell out of my chair it was so crazy to hear that. Her son is 16 and his tics started when he was 7 or 8 and have remained relatively mild and in fact she's never even taken him to a neurologist. They have family history so I think it's not as scary for them in that they've seen it and know it's not the end of the world.

 

Thank you all again so much!!!!!!

 

jdmom

[Chemar]

Hi jdmom and welcome

 

when there is no family history of tics/TS and with such a dramatic onset, it is really wise to be looking at other areas that can trigger tics rather than just accepting a TS diagnosis. many conventional doctors are really not up to date with this whole area of tic triggers and just give a TS or "transient tics" diagnosis so easily

 

one of the first things to consider with such sudden onset is PANDAS(neuro problems caused by strep) or other infection related triggers

 

also the relationship of the onset to vaccinations?

 

food allergies? environmental allergies?

 

our admin, Sheila Rogers, has written an excellent book on all this

http://www.latitudes.org/book.html

 

and there are also some informative articles on the main page here

http://www.latitudes.org/tics_tourettes.htm

 

my son is now 20yo and we have family history of TS on my husband's side

His tics were very severe when younger but now so mild that most dont even notice them

I have a link in my signature on what has been helpful for him

 

hope that gives you a few more avenues to consider

[jdmom]

Hi jdmom and welcome

 

when there is no family history of tics/TS and with such a dramatic onset, it is really wise to be looking at other areas that can trigger tics rather than just accepting a TS diagnosis. many conventional doctors are really not up to date with this whole area of tic triggers and just give a TS or "transient tics" diagnosis so easily

 

one of the first things to consider with such sudden onset is PANDAS(neuro problems caused by strep) or other infection related triggers

 

also the relationship of the onset to vaccinations?

 

food allergies? environmental allergies?

 

our admin, Sheila Rogers, has written an excellent book on all this

http://www.latitudes.org/book.html

 

and there are also some informative articles on the main page here

http://www.latitudes.org/tics_tourettes.htm

 

my son is now 20yo and we have family history of TS on my husband's side

His tics were very severe when younger but now so mild that most dont even notice them

I have a link in my signature on what has been helpful for him

 

hope that gives you a few more avenues to consider

Thank you, I don't recall if he was tested for strep. I do remember there was a test having something to do with lime disease? Our neuro is a pediatric neurologist specializing in tics, tourettes and movement disorders. Maybe I've had too much confidence in her diagnosis based on your feedback. I am really curious about the environmental allergy thing since everything calmed down completely when we were away from home last winter. Is there testing for that?

[mar]

Hello,

I want to thank you all for taking the time to hear my story and share your experiences and support. It does feel so much better to be connected to others who are going through or have gone through this.

 

Laurena, you mentioned your son was off catapres by freshman year. When did he start taking it and what were the side effects? Our neurologist says she treats the child, not the parents and if he's doing fine, there is nothing to treat. Now I respect this and agree completely, but I also don't want my son to start getting teased and have this become a real issue for him before we would turn to medication. I also wouldn't want him to be so mellowed out that he isn't able to stay engaged in his studies. I would love to hear your opinion on this.

 

Mar, what do "ds" and "dh" stand for? I must be missing something!

 

CP, to answer your question, we do not have any family history of TS. This just came out of the blue and hit us like a ton of bricks. My daughter is 5 1/2 and she doesn't have any signs of this. I can tell you my son has always been a more anxious child than her and is intense/high strung.

 

My son's best friend who lives nearby has a stutter. I've read that stutters are also a neurological condition. It makes me wonder if there could be an environmental factor. Another thing, when we went on a vacation last winter to my mother-in-law, she lives in a forest basically, far from the city and his tics stopped pretty much completely while we were there. I was so baffled by that. It made me feel hopeful that perhaps this could all go away some day. I can't believe this waxing/waning business. There has to be something causing it. I don't understand why the doctors don't tell you do anything about the diet/supplements, etc. Do they really work and why does everyone think they don't say anything about these? We will try the dietary changes & supplements although I know it's going to be hard. He has such a sweet tooth!

 

Has anyone tried acupuncture? I've heard it is helpful for anxiety which is sort of related.

 

Here is an interesting story. When I first learned that my son had this, I was not comfortable telling anyone (because that makes it more real!). I decided to tell a friend and amazingly, she told me her son has the same thing! I almost fell out of my chair it was so crazy to hear that. Her son is 16 and his tics started when he was 7 or 8 and have remained relatively mild and in fact she's never even taken him to a neurologist. They have family history so I think it's not as scary for them in that they've seen it and know it's not the end of the world.

 

Thank you all again so much!!!!!!

 

jdmom

 

I'm sorry for the confusion ds (my son) and dh (husband). I am always in such a rush when typing.

[laurena82]

Hi JDmom,

 

DH-dear husband, DS= dear son, DD=dear daughter....you get the idea

 

re:

Our neurologist says she treats the child, not the parents

 

Maybe this came off sounding different in person....but, reading it, I think, "holy cow, that guy sounds condescending!".

 

If you got the feeling that he was condescending/arrogant/etc....., I would encourage you to look around for a different neurologist....honestly, you have a few years ahead of you in dealing with a neurologist.....so, best to have one you are comfortable relating to.

 

On the positive side,....the rest of the remark makes it sound as though your son's tics arent very severe......so, that is a very positive thing!

 

In my son's situation , eliminating food allergies reduced the motor tics by about 90% I'd say.....it was HUGE. Of course....avoiding all of these common allergans (corn, milk, wheat, eggs, chocolate...) was very difficult.....and, ...sigh.....it did nothing for the vocal tics. So, in our case, the only reason I decided to try to meds was to see if they would help the vocal tics.

 

Regarding stuttering....PLEASE tell the stuttering boy's mom that not all speech therapists are the same! Mine saw a speech therapist for five YEARS (K through 5th grade) with NO improvement....and I was told it just WASNT POSSIBLE for him to get better..........THEN....I found a different speech therapist who had additional training in DYSFLUENCIES.........we started the end of May...by Sept.....he was fluent except in extreme situations....and by the following spring....he was COMPLETELY fluent all of the time! Honest! Regarding stutering: if there is one thing I would scream from the rooftops....it's that you need a speech therapist who's taken additional training in DYSFLUENCIES !! !! !!

 

 

The other two questions you asked re: catapres side effects....the main one he had was tiredness....and he was able to take the minimal dose at bedtime, so it wasnt much of an issue. Occasionally, I"d give him half a pill in am also if he was especailly bad and having tics again...but that was rare. It wasnt effective enough to remove the vocal tics, either, but it did as well as the food allergies re: removing motor tics....and after a few years of the food restrictions....it was just too difficult to maintain, so I "gave up" and used the catapres...

 

Since your post makes it sound like the tics are relatively minor,.....(and the neurologist isnt even sure he wants to treat them with drugs?) I would DEFINITELY look into food allergies as being causes, and also others have had good luck with supplements. In our case, I really didnt see much improvement with supplements.....and he was on huge amounts of them, prescribed by an environmental medicine MD at one time....

 

There is something called "tardive dyskinesia" which are "permanent" side effects SOME psycotropic meds can cause (catapres doesnt)......anyhow....I would be VERY hesitent re: using those unless you felt you had no other recourse.

 

But, on the positive side......I honestly can say that my son WASNT teased re: motor tics.....and , if /when he was, he blew it off, and hence wasnt bothered by that

 

However, the fact that the vocal tics made him unable to talk fluently, and unable to get words/sentences out, etc.....that was a HUGE issue for him.....

 

 

Anyhow....best wishes with everything.....you can get TONS of support here.....and my best advice is to start by looking into food allergies, and perhaps try some supplements, also.

 

Regarding the food allergies.....dont completely trust the skin tests and IGE blood tests if they say "negative".....my other son tested "negative" to corn on both of them....but with the actual elimination diet....corn was DEFINTELY the cause of his hives/allergies. The BEST way to know how foods affect you, is to completely remove the food from your diet for a week, then add it back at numerous meals for a day or two....and see what happens that day and the next. IF it's causing a problem to you...you will get that problem....and it will be MORE dramatic than it "usually" is....

 

BEST WISHES!!

[lynnie1264]

Welcome jdmom,

 

I could totally identify with you when you said your heart broke in to a million pieces that morning. that's just how I felt, I don't think I've ever felt so devastated in my life. My son is 9.5 now and was diagnosed with TS in May last year. Like you, I also knew about TS, my brother has it {though it was never mentioned} and I had done my own research on it 15 yrs earlier. Little did I know my own son would have it. I did not know it was heriditary til I researched it when my son had it.

 

However, my son Brendan is doing fine, really he is. It is more of a problem for me than it is for him. Mostly I'd sau his tics are mild, but there are times when they escalate, I'd say moderate.

 

Like your boy, my son tics more when excited or stressed. You're right, we can't stop them from having fun just so we can ease the tics. I can also pinpoint the exact day it dawned on me... April 19th, 2008... during his soccer game. There had been tiny, insignificant things in the past, but that head to the side tic did it for me. I had to stop myself from crying just watching him.

 

I really do relate to you, and i want you to know that he will be fine in the end. Honestly, I never thought I'd get over it, but it's nowhere near like I thought it would be.

 

I go between accepting it and then falling back to not accepting it. Sometimes I prefer not to look at him, so I don't see them. That stinks, but I think most of us have gone through that.

 

I am nowhere near as knowledgable as some of the other ladies on here, but I can relate to how you are feeling.

 

all the best, and keep us posted please. Moral support helps so much.

 

Lyn.