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My Poor Little Boy


fitforit

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Hi, just a little story before my other story.

 

I have had some tics all my life, the earliest I remember was when I was 6 years old and I remember the feeling I had was that "my skin was out of place". I remember standing in school assembly fidgeting with hip and shoulder tics. After assembly and going back to the classroom, I remember my teacher looking around the class like she wanted to choose someone for a classroom duty like she did, so enthusiastically I put my hand up first. She then asked me and 2 or 3 other children to stand up. Then I was the first person she spoke to. She did an imitation of my tics in front of the whole class and and then said, "Why are you doing this?" I started to cry and just mumbled, "My skin is out of place." She then told me to sit down and nothing was ever said again to me by that teacher.

 

My parents have never said anything to me about my tics, but they must of surely noticed. I haven't noticed anyone else in my family with tics. I manage to supress most of my tics, though I have been "caught" doing them sometimes and have been asked by some people why I move my "Whatever Body Part" like that. The tics move around my body but mostly in my shoulders and neck now and they do get very sore sometimes. These have been persistant for nearly 5 years now. It mostly feels like tight shoulder muscles and I need to relieve the tension. I know that being stressed and not having enough sleep increases the frequency of my tics. But I have had a stressful time with a divorce and fighting to keep my son, which I do have custody of and I just cannot sleep until around 2pm every night but still need to get up at 7:30 every morning. Not being able to sleep is also something that I can remember from being around 5 or 6 years old.

 

I am 40 years old now, and my son is 5 and a half.

 

And my son has started having tics.

 

First it was the eye blinking which lasted about 2 months. I cried when he said "Daddy, my eyes are broken"

That stopped.

 

He had a short bout of constantly blowing rasperries, that went away.

 

His eye blinking came back for a short time, only for a couple of weeks.

 

Then he started snorting like a pig. Lots of people noticed it. He told me that he was "crazy". That lasted maybe six weeks.

 

Now he has started sharply rolling his eyes up and to the side. It happens both sides, I haven't noticed if to one side more. It started shortly after I bought him a TV Video game. But also he has really started reading a lot of books and "trying to read the words" not just looking at pictures. Actually for his age I feel he is quite advanced in his reading. And he has also started using my computer a lot to download computer games to play. He also goes to bed quite late and over the past few weeks it has been past midnight as he refuses to sleep. Kind of like what I remember about myself at that age. Anyway we are giving the computer and video games a rest and I have stopped him reading in his bedroom after I put him to bed as it isn't bright enough to read. I know my stress can affect him though I try to be as calm as possible in front of him. And I have tried to keep him from getting angry as he does tend to get angry easily.

 

Anyway he has now told me "My eyes are wrong. I can't stop turning them. My eyes are crazy".

 

What do you say to a little boy about this? I feel so helpless.

 

He is a very smart boy actually. He is bi-lingual, he can speak English and Mandarin Chinese and he is a little athlete as well. he has always been strong, has roller bladed since he was 2 y/o, no training wheels on his bike since 3y/o and he is also right into TaeKwonDo right now too, he has been practicing for more than a year. He loves art and he loves going to Kindergarten. He can be a little naughty at times, but I don't think he is that bad. I am also a Kindergarten teacher and I have seen "naughty kids".

 

What can I do?

 

Should I take him to a doctor to comfirm he has tics or that it could be something else. I am sure he doesn't have any allergies as there hasn't been any change in his diet to start or stop his tics.

 

My poor little boy. I love him so much and it hurts me so much to think he is going to go through what I went through and what I still do go through.

 

Thanks anyone for listening.

 

Fitforit Daddy

 

 

I told a close friend last night about my little boy. This is the first time I have told someone in close to me about this. I only did so as she noticed his eye rolling tic and asked him why he was doing that and told him to stop.

 

She really had no idea of such a thing as "Tics". Only if we were all that lucky.

 

I emailed her an article I found on a website with a general overview of TS and Transient Tics. I checked my email tonight and this was part of her reply:

 

"I think like you said we shouldn't force him to correct it but we should still try to let him know or somehow try to remind him it's not right to act like this.... Otherwise, I am afriad he may think it's nothing wrong with it and keep doing it for a long long time and maybe hard to correct him later..."

 

Poor Little Boy. He is the one who told me, "Daddy, my eyes are wrong."

 

I told him last night that I know his eyes don't feel comfortable now and that it sometimes happens to Daddy too. It should go away soon.

 

Actually tonight I did notice that is ws much less frequent and severe.

 

I also printed some articles out and gave them to his Kindergarten teachers today, so maybe there hasn't been so much attention drawn to it today.

 

By the way, I am an Australian living in Taiwan, so this is really difficult for me as it really seems people are either ignorant or don't like talking about it hear. I am also a Kindergarten teacher and I have seen a fair few kids with Tics. Right now I have one girl in my class who constantly blinks and there is another Daddy of one of my children who also constantly blinks, sometimes so hard his head tilts forward, and I have taught other kids before with mostly eye blinking or eye rolling.

 

Is there anyone from Taiwan out there or does anyne know of a support Group here in Taiwan. It is hard to find information and I don't know where to find an article in Chinese so to make the Chinese teachers and my Taiwanese friends more aware of this.

 

Fitforit Daddy

 

 

Hi. I've just read your post and I cried. I am 39, living in the states, have mild TS and just this week realized that my six year old son had it. I cannot finish this right now, but later...can we be friends? I need to connect with you and your family, just not right now. My heart is broken, for you, and for us. I will be returning to this site. I'm glad I found all of you. Laurie

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Hi Laurie and welcome to Latitudes ACN Forums :)

 

you have found a great place to receive support and also to find lots of great info to make the TS journey easier

 

do also take a look at the homepage at http://www.latitudes.org for more to help you, especially the articles on Tourette Syndrome

 

again, welcome and we look forward to having you as part of this caring sharing group :wacko:

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  • 2 weeks later...

Well, my boy's eye rolling has stopped, but... he then started making a constant clearing his throat type nois, not too loud but defiately annoying while sitting in the living room trying to watch TV. But that has also cleared up.

 

I have now noticed that he has a slight neck stretching forward type tic now... This is similar to what I have. I know with me that this tic gets worse with stress and little sleep. I have tried keeping our place as stress free as possible.

 

But now I have also noticed an action like he is rolling his ankle over when he walks which means he kind of bows his legs for a couple of steps like a frog. I also have this kind of tic in my ankles too i don't do the frog step.

 

Again he has told me that his legs are wrong, just as he told me his eyes were wrong.

 

Why do these things keep moving around?

 

Anyway he has asked to play computer games again as his eyes are better now...

 

My beautiful little boy... I love him so much.

 

Has anyone who has had tics, or maybe not... how have you explained the tics to your children to that they can understand what is happening to them...

 

For example with me... I had the feeling that "my skin was out of place" and my boy just says his eyes/legs are "wrong". No one ever told me anything about tics or TS...

 

thanks all.

 

fitforit.

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Why do these things keep moving around?

 

Anyway he has asked to play computer games again as his eyes are better now...

 

My beautiful little boy... I love him so much.

 

Has anyone who has had tics, or maybe not... how have you explained the tics to your children to that they can understand what is happening to them...

 

fitforit:

 

I am 34 & I have had TS since I was 8. I understood a lot of what you were saying in your post. When my TS first appeared, it started as a throat-clearing. I remember being at the kitchen table, in my mom's house (she had just died of cancer), and my grandparents who ended up raising me were living there with me. I remember my grandpa telling me to stop. And of course, I couldn't. So, he told me if I didn't stop, I couldn't eat dinner & would have to go to my room. I never ate dinner that night. Luckily, my grandma quickly took me to the doctor, got an official diagnosis, and became very educated about it. She became my biggest advocate.

 

My dd is only 3, so I don't know if she will develop TS or not. My guess is yes, in some form. My biggest hope is that it is mild.

 

I just wanted to encourage you to stick around here, because there is a wealth of information here. While you & your son may never be completely tic-free, I have been able to achieve tic-free periods using info I found here & from my naturopathic doctor.

 

Like Jeff said, I really think you both would see a difference if you cut out artificial flavors, artificial colors, all preservatives, & especially MSG (monosodium glutamate). I have noticed from a very young age that these are triggers for me.

 

You asked about talking to your son about it openly, and while I haven't had to have this discussion with my dd yet, I definitely will talk about it openly with her when/if the time comes. It seems it is much easier for her to accept diet restrictions/TV restrictions/etc.. if she knows the reason behind it. My guess would be that your son would also want to relieve his tics so it might be easier for him to accept the restrictions.

 

Since you said your son was pretty advanced, I'd probably just say something along the lines of, "Sometimes people's brains accidentally send out little messages to our body that causes us to move when we don't want to. That's what's happening to you now. It has been the same for Daddy almost all my life. It's the same for lots of other people, too. We're going to try some things that might help our brains not to do that so much."

 

I also just wanted to add quickly that I completely understand why you did not explain your own TS to your close friend. I wouldn't have either. I am very guarded as to who I tell about my TS, because people who are negative about it are constantly looking for it, and it just annoys the living heck out of me. Not to mention, when I feel like people are looking for it, it makes me extremely uncomfortable & causes me to want to tic more (because their focus on it causes me to focus on it, which makes it worse, like Chemar said).

 

My husband (dd's father) has never had TS but has always had OCD. His OCD was very severe when he was little, but he was able to will himself to stop it. He has made comments about being able to "will yourself" to stop the TS. He hasn't said anything about it in a long time, and I'm hoping he finally understands it from living with me for so long. But, at first, he had planned to teach our dd to will herself to stop. I was mentally preparing myself for divorce at that time, because I would not have our dd live like that. At best, it would teach her to suppress around Daddy. At worst, it would make her feel helpless that she couldn't do what he asked & send her into emotional upheaval.

 

Anyway, like I said, I hope he's learned what it's really like by now, because I'd like for us to have a long & happy relationship.

 

OK, long post over. Please keep us updated!

 

-Julie

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Fitforit,

First of all, I would not call him my poor little boy.

I also called my child when he started ticcing.

I have since then seen a pschologist myself in being a more optimistic person.

Really pessimism never help in any situation.

Actually prayers and optimism does heal the body and have been well documented.

 

You can always encourage him that he will be fine and also describe to him that you too have the same

problem. Did u ever tell him that you have TS?

 

We can not win all battles in life and sooner or later we too will succumb to our destiny with a higher being(God)..or what ever your belief is.

 

Try to live life fullest and be happy all the time.

 

Like that little boy of 9 that had cancer and passed away. From what I read on Kim's posting, he was full of life and that is the way we should live life.

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Fitfor it, Sorry to hear about what your little boy is going through. I know that it's heartbreaking. But I feel confident that you will find what triggers your son's tics, and find ways to remove the triggers. One of the biggest triggers for me and my girls is artificial colors and artificial flavors in foods. Many other folks who post on this board have also found this to be true. Some examples are Red #40, Yellow #5, etc. They are very commonly added to breakfast cereals, "fruit" drinks, candies, etc. If your son is eating foods with artificial colors and flavors, and some preservatives, maybe you can find some "all natural" replacements.

It has worked wonders for us.

Best regards. Jeff

 

Well my boys ankle rolling/frog step was worse tonight. I picked him up from the babysitter and I noticed it straight away. Again he told me his "legs were wrong and he has to walk funny".

 

We stopped in the park to play and I watched him run around and play with other kids and it didn't happen for nearly 30 minutes. But then as soon as I called him over and told him it is time to go home, it started again as soon as he slowed down to walk. I also noticed it didn't happen during Taekwondo class last night either, but happened walking home after. But tonight is worse.

 

I was watching him and he rolls his ankle outwards so then his leg turns out and then he has to kind to do a hop so he can put his foot down again properly so he won't fall over.

 

He saw me looking at him and he told me not to look at him walk funny. I asked him where his legs felt uncomfortable and he pointed to the midle of his thighs.

 

Anyway I was back reading some comments when I saw the one quoted above from Jeff. My boy likes to each potato chips and the ones he wanted on the weekend were BBQ flavor and have Red #40, Yellow #5 clearly marked as an ingredient as I now know to look for and avoid. Guess I am going to have to stop all potato chips now. Have to wait a few days to get this lot out of his system I guess, but just like all his recent tics, they only seem to have lasted around 2 weeks or so.

 

But were will it be next... But maybe it will be gone altogether.

 

I think he kind of knows his leg tic relates to his eye tic. He also told me tonight that maybe in 10 weeks his legs will get better too.

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Hi fitforit, Yes, those colors could very well be making the tics worse. But you don't have to stop ALL potato chips... Herr's regular chips and Lays regular chips are okay... and you can probably even find some all-natural chips of other varieties.... look in the all-natural section of your grocery store, or some organic chips.... Be sure to keep reading labels.

Jeff

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Well my boy told me his legs were a little better today.

 

I picked him up from the baby sitter and I noticed it again straight away. He told me not to look at his legs, though I was trying to do it out of the corner of my eye. I guess he has noticed people looking at him now and is becoming self concious.

 

Anyway as I previously said I haven't noticed it while he is running around or while he was practicing TaeKwonDo, so maybe he knows this too, so while coming home from the babysitters tonight he just ran forward then ran back to me practiced kicking here and there. He just kept moving. Don't know which is worse, the tic or him jumping around like that...

 

We had a short talk about it tonight and we discussed that I think some foods are making him feel a little "funny" inside (as he has told me). I told him that it happens to daddy sometimes too like if I don't get enough sleep or I get angry my shoulders feel funny inside, so this is why I try to sleep early (but I don't, I think I am an insomniac) and I try to relax so i don't get angry so I can try and feel good. This is why I want you to not eat those chips for a while and let's see what happens.

 

He seemed pretty cool, calm and collected about it. I love this little guy so much. He is due to start his soccer comp in 2 weeks so I hope this has cleared up by then as I feel he may say he can't play because his legs are funny. But by what I have seen, his legs should be fine as long as he is running around and not walking.

 

So let's wait till tomorrow.

 

fitforit daddy.

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fitforit,

 

Those tics that interfere with walking or those that are really noticable are so upsetting. I'm glad to hear it looks like it's subsiding.

 

I had to smile when you posted that your son said "don't look at me." I've heard that a few times myself!

 

We have been through many tic cycles around here, btwn the two boys. Keep working on it. You will relax more as time goes on, and you realise that there are improvements, and when you hit a bump..even a big one, you can help your son over it.

 

You couldn't find anyone more heart broken or scared when this all started with my oldest son, and I could see the signs in my youngest when he was much younger, like 3 yr.s old, because I knew what to look for.

It does get easier, especially when you know you are doing things to strengthen them, and not just a bystander at the mercy of fate and no information or misinformation.

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  • 3 weeks later...

Hi

 

Well I am glad to say that it seems that my little boys tics have all subsided recently. He has stopped his most recent frog step and all seems OK again.

 

He is bugging me for chips and to play his TV game again. But I am just holding off for a while longer.

 

From what I see on this website, it seems my boy had only a slight case... I should be thankful. It hurts so much to see your baby in so much discomfort. Thank you to everyone for the support and information offered. I truly appreciate it. I wish everyone out there well.

 

Fitforit

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  • 1 month later...

Hi There

 

Well it has been 6 weeks, but my boys funny hop/step has returned. I noticed it bad tonight asd I asked him if he was OK and he said that his leg feels funny like it did before.

 

I also noticed starting on Christmas day him making a small squeaking noise every few breaths. This has cooincided with a bit of congestion he has, though he does clear his throat every ow and again, but I don't think that is at an abnormal frequency, the sqeak is.... and it is a very annoying noise to listen too.

 

The only other thing I can possibly relate to both of these are that over Christmas he did eat a lot of junk type food and I was unable to control some of this intake, though he knows that I don't want him eating certain things. I am wondering if he slipped some things a some chrissy parties when I wasn't there. Guess we will just have to wait till this gets through his system...

 

And if this is like all his other tics, it should be gone in a couple of weeks... I am praying...

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I know the roller coaster you are on. My eight year old son has been up and down with his tics for about nine months now. Over Christmas he was very mild, but just before he got very bad with his shoulder, abdonimal and eye blinking that I thought about checking myself into a clinic! We took away all forms of TV for a week as well as put him on some Calcium and Mag, and gave him a supplement from a company called Source Naturals named Attentive Child. Who knows if the tics will return, I am preparing myself for them, but praying they won't. They are not hurting him, and he does not like me looking at him either, but it is hard for me to stop. My wife seems to be much less concerned then me, but I know she really isn't, just thinks I do enough worry for both of us. We are watching what he eats and have let him start to play his new Nintendo WII as well as watch a little TV, but we have told him if he wants to stop the tics he needs to stop watching when he feels himself doing them. This has worked so far, but like I said, they do call them Transient, so I am expecting they will return. Perhaps the best I can hope for is that they will be mild.

Lenny

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