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My Poor Little Boy


fitforit

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HI There

 

Well my boy's squeak did slow down a lot in the weeks after Christmas. We are currently on vacation back in Australia. We have been here for a week and a half so far and his squeak has started to increase in frequency. He does it all day long now... from once every couple of breaths to a couple of times every breath and in breaths between mouthfuls of food while eating and also while speaking or reading sentences.

 

The only things I can see that are different, despite the change of location for our vacation are that he has been playing his Gameboy a lot and drinking more Coke than usual. The only other thing is that he is bilingual but I do feel Mandarin is his first language and as we are in Australia now for vacation he can only speak English. His English is fine, but maybe the thought process going on inside is causing this tic. Anyone else had this kind of experience. Before he got eye-rolling from video games, but I have stopped them again in case it is causing the tic and we have stopped coke too and started on the multi vitamins again. I left them back at home so he hasn't had any since the vacation started... So like usual it should take about a week or so after changing things for this to stop.

 

He calls it "my noise" and he tells me he can't stop making it. It is a really annoying noise, but I guess it could be a lot worse. I am staying with my parents while on vacation and while grandma and grandpa haven't said anything, I am sure they have noticed... Maybe they won't say anything, just like I am sure they would have noticed my tics when I was a little boy and teenager and I still have some now, but they never said anything...

 

Anyway, that's what's happening...

 

Fitforit Daddy

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Hi

 

hoping it all settles down now that you are supplementing with the multi again (so important!) and eliminating that caffeine, which is known to be a BIG tic trigger

 

also, the exceitement of the vacation and the change of routine etc etc can additionally be triggering more tics

 

enjoy your vacation! :unsure:

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Hey fitforit.

 

We are in the same boat as you (and all on this forum)

 

We have just experianced all this for the past 2 weeks now. It was like being punched in the stomach, andd then run over. We both just wanted to cry

 

Your son and all our children are not alone. Millions suffer around the world. Be strong for him. I can guarentee you it is worse for you the it is for him.

 

The one good thing about kids is that they adapt, and boy do they do it quickly.

 

3 years ago I was in hospital waiting to be diagnosed for Glandular Fever. In my ward was a young man of 25 who had fallen of a building site and was severly brain damaged.

 

He had ben on that ward since he was 18 yrs old. His parents came in regularly to sit with him and talk to him. He was completely brain damaged!!

 

When ever things are getting on top of you and your feeling down. Think about what Michaels parents nmust be going through. It makes our massive problems seem not so massive after all.

 

Take care, you both are not alone.

 

John

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Hi There

 

Well my little boys "squeak" noise has almost disappeared now. I am thankful for that as it was so annoying... But, his leg tics have returned and today is the worst I have ever seen it.

 

It started again I noticed just a bit on Saturday, just a bit of ankle rolling as he walked. This is the type of tic that I still get in my ankles... The feeling of needing to stretch the muscle down the side of the lower legs and the only way to do this is by rolling the ankles... But it gradually got worse and worse and by today he was jumping like a kangaroo, 3 or 4 hops at a time. He would walk a few steps and then jump up and kick one leg out to the side. It was most unpleasant having to watch him do this.

 

As I am on vacation, I had planned to go to an interactive museum with him and invited my mother along too. Well I noticed the tic right from the first few steps of him getting out of bed this morning and then after we drove to the train station and got out of the car and started to walk, that is when it really got scary, he was just jumping up and down and side to side, to be honest and maybe sound crude so I am sorry if I offend anyone, he looked retarted... I almost burst into tears.

 

Well my mum asked me what is he doing, he was doing that yesterday, so I told her that he sometimes has been getting tics... and she replied "In his legs?" Like she was shocked to get tics there... well I didn't want to go into all the details right there and then as we were walking to the railway station, like he has had eye blinking, eye rolling, grunting and snorting noises as well as the latest squeak noise and that he also had this leg tic back in October last year and it only lasted a couple of weeks. Instead I just told her, I get those too, I have as long as I can remember, to which she replied that she had never seen me do that... Well I never have done it as bad as what he did today. By the late afternoon, it had settled down alot and he just had a bunny hop every now and again, but this was only after hopping and jumping and kicking his way through the museum for over 2 hours... My poor little boy.

 

It is just strange that I have removed all the things that I have thought to trigger his tics and as I feel with success with his squeak noise, but for this leg tic to come on so strong, I can't think what this could be now.

 

He acts like it is nothing and he tries to disguise it with running, which he doesn't do it while he is running as well as doing his TaeKwonDo kicks to disguise the kicking action. He actually ran and side kicked me in the knee today and as I wasn't ready for it I turned around in shock and pain and he was standing there saying Sorry Daddy... I know he didn't mean to do it...

 

We are supposed to be having a relaxing vacation....

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fitforit,

 

I just wanted to encourage you. my husband tells my when he was a kid he would do some tic and then get tired of it, he would change it to something else. I know how you feel about watching your child do things that make him look retarted. I had to have a talk with my son last year when he became soooooo loud we had to remove him from church. He didn't want to do that, so we told him others could not hear if he stayed. He didn't get it until we said it was like a crying baby, then he got it.

 

take care I really hope thing get better soon.

C.P.

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Hi

I'm kind of new here too, but have read your previous posts, and I totally understand. I was just wondering if you have sought or implemented any treatments like vitamins, doc visits, chiro, ect.

With the leg problem he is having, maybe a chiropractor or osteopathic doc could shed some light?

 

Also, if your child is in school, perhaps you could just say he is having some leg cramps and you are seeking treatments. I can relate to when you say that you used to do some things when you were little and your mom doesn't remember. I believe that I too had a few quirks. I remember distinctly bending my right leg back at the knee when I walked (about 10 yrs old I think) We even went to the doctor because I told my mother it felt tight, and the doct just said it was growing pains. My mother has no recollection of this (of course she is now 83 but believe me, a young 83, very on the ball and healthy for her age, thank God). So I don't know, like you say, my habits were never anything severe or alarming enough to warrant any attention. But for my son, she is beside herself!

 

Hope everything settles down soon and you are in my prayers.

Faith

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fitforit,

 

I am sorry to hear that your son is having trouble with his leg tic. My heart goes out to you & your son.

 

Have you tried chiropractic? or acunpunction? or Epsom baths?

 

My son's chiropractor has an explanation for every tic in various body. Basically it has to do with the nerves firing signals for the tic.

 

I highly recommend the epsom bath. I would suggest your son take it 2X a day, once in am & pm. There is also an epsom cream from Kirkman that you can order online.

 

The frustrating thing about finding the cause for tics is that everyone has a different underlining immune issue. What works for one doesn't work for the other. However, don't be dispair, as you rule out some of the things that don't work, it only brings you a step closer to what works. Keep looking and searching. When you put forth your energy in search for answers, it will take you where you want to go.

 

Take care!

 

Patty

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Keep your spirits up fitforit. Like I said you are not alone.

 

When Thomas Eddison invented the light bulb, he tried 3500 time. When asked about his failyre he replied, he hadnt failed, just learnt 3500 ways in which it didnt work. He never gave up hope and achieved his goal.

 

As I am sure you will one day.

 

Take care

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Hi There

 

Well my boy was walking around a lot easier today, but still got the bunny hop going, but no where near as bad as he did yesterday. I was feeling so much better until after stopping at the supermarket on the way home tonight and after getting out of the car he took one step and then it all started. Jumping up and down, to the side, bending his knees out and luckily I was hold his hand as he did fall down. He looked at me and said, "Dad I can't walk properly, my legs are crazy". My heart just dropped right out and fell on the floor.

 

The only thing I can see he had different today was a bit of chocolate coated ice cream, but he has eaten both chocolate and ice cream before and had no effects and also there was some egg in the salad we had at dinner. I was beginning to suspect eggs as he has been eating a lot lately since we have been on vacation and thinking back to the first time he had this leg situation he was eating an egg sandwich from the breakfast shop every day for about 2 weeks. I stopped that and it seemed to clear up. but he only ate a little egg tonight and otherwise hasn't had an egg for about 3 days now.

 

He doesn't seem to have any problems when sitting or running, but I asked him tonight in the car on the way home if his legs feel funny when he sits down and almost immediately they started twitching. Then he said he needs to roll his ankle and foot around like the Chinese Doctor told me I had to do when I was going there recently for an unrelated problem.... He says if he does that it feels better. From what I can see, it looks like the jumping stretches and stresses the lower leg muscles and he rolls his ankle when walking which make him turn his knees out, but when the actions are combined together, that's when he really looks out of control.

 

I am beginning to wonder if he has something more than just a tic here...

 

fitforit.

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Fitforet,

 

Can you tell us the steps you have taken to help him with his tic problem?

 

Perhaps we can have some inputs in adding to your steps you have taken already.

 

This whole community is waiting to help with whatever knowledge we have.

 

Can you tell us if you have try to find a alternative doctor to help him with adding supplement?

 

More information here would be helpful for us to help you.

 

Good luck

 

 

Daniel

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  • 2 weeks later...

Well my boy's legs have been fine now since Thursday. It just stopped.

 

I have tried to cut out all junk food as much as possible, but I didn't realise how much junk food we really eat here in Australia until we came back for our vacation. When you go out anywhere, it is quite difficult to by non greasy food. I have tried to cut as much fatty food out as possible, french fries or chips as we call them here, as well as coke... back in Taiwan there is so much variety of drinks available but Australia it is quite limited... I know he could just have water but that is boring... And I have had to stop him plaing all video games, even on my cell phone which he sneaks and plays every now at then.

 

He is just taking a Children's Multi-vitamin.

 

His little squeak noise came back for a short while and he has told me his eyes are sore again but I haven't noticed him rolling them.

 

But the strange thing is about my family's ignorance of this issue. I mentioned previously about when my mum noticed his legs and then I told her he gets tics every now and then and she replied "in his legs" and then I told her that I do too and have all my life and her response was that she never saw me.... well around at my sister's place today, she keeps offering him junk food, like candy, coke, ice-cream with Chocolate (which he reacted bad to before) but I told her I don't want him eating anything like that. Actually my boy is quite good with it now, he seems to accept he has to listen to what I say... but my sister asked me why he can't, so I said that I think he is having some reactions to some foods, and she asked me what kind of reactions so I told her that he is getting some tics. Her response was, "what is a tic?" but as my boy was sitting on my lap at the time I didn't want to have to explain it all to her as he is big enough to know that we would be talking about him, about his legs and his eyes and his noise and I didn't want it to start up again through becoming selfconcious...

 

Well it made me wonder... I have my tics, but my mum "never noticed" and my sister mustn't have suffered from them or either of her two boys who are 14 and 18 now as she doesn't know what tics are...

 

I am starting a post graduate degree in Health Promotion this year... I am thinking maybe I should do any assignments I have about TT and TS...

 

Just rambling...

 

thanks

Fitforit

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Fifforit,

I am glad to hear from you again.

One point that sticks out from your post is that your mom did not notice you having this tic.

 

My question to all of us including me is...

 

What is being a normal kid/person?

 

What is it that make us normal?

 

We behave and act the same way?

 

We have to talk the same way?

 

My answer to that question is after many trials and tribulations is...

 

Just be yourself ...Just be yourself..

 

Whatever God has given us...given you...

It does not means we should stop getting healthier..in fact it is our responsibility to get/eat healthier..

because this so call gift from God, LIFE is very percious..

 

When a baby is born..it is precious..

 

But be yourself ...enjoy life as much as possible...

 

Don't be hard on yourself ...if only he can walk without hopping...some people can not even walk..but sit in a wheel chair..

 

There will always be people better than us.

There will always be people worst than us..

 

Be happy with what God has given us and IMPROVE upon it..but don't fret it..LIFE IS PRECIOUS..

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You are so very right, Daniel. Like, I think I have some twitches and compulsions, and I can't ever remember being teased (except amongst friends joking around), it was never an issue. I don't even wonder if anyone notices. For myself, I don't care an ounce. We are frightened for our children, because we never know what is around the corner. Since I have seen my son have a few tics at the same time I was just thinking before how I could deal with a little blinking if the noise would just go away. I bet any of us would take that first small tic we first observed and leave it at that if it would never escalate into anything worse. I think its the fear more than anything else, not just that we want our children to be "perfect". Yes, no one is perfect, my sad feeling is just that our kids have to "wear these symptoms" for all to see. Its like there is no privacy in this disorder. That's the tough part. We all want to spare our children any harm or humiliation. I think every generation gets more and more in tune to the insensitivities of the world.... Now I am just rambling!

 

Well, thanks for that and my prayer is that we should be able to find help for our precious ones more readily without the fervor and desperation we are all feeling. Hope all is going well with your child.

 

Faith

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My boy has still been walking so much better now, but as he sais yesterday that his eyes were sore, well he has started the eye rolling again today.

 

So on this vaction his tic has gone from his squeak noise to his bunny hops to his eye rolling which is back to where we were when I first wrote to this forum.

 

And again to discuss the ignorance of some people on the tic issue. I was again around my sisters place and he was playing with his 14 y/o cousin all afternoon. But just before dinner time I heard my cousin yell out, "What's with the eye rolling?" and then when we sat down at the table for dinner his cousin said so loudly again two times, "What's with his eye rolling?" bringing everyone's attention to focus on my little boys eyes. And of course then my little boy couldn't control it. I just wanted to divert the attention away from him as again, sitting there over the dinner table with a bunch of people who have no idea what tics are would be the best thing at that point of time. I just said, please don't talk about it now, it will make him feel more uncomfortable...

 

Do others find some people so ignorant or insensitive?

 

The only triggers I can see today is that he was sitting really close to the TV this morning, maybe only about 3 feet away from the screen but also he can get himself very worked up sometimes when angry and as he was playing with his cousinall afternoon, well of course they did have some fights and arguements as kids do but as his cousin is older, he usually won those which made my little boy very very angry... It was a computer game played on the TV that I feel first caused his eye rolling so I stopped that so I am suspecting the closeness to the TV today could have been the trigger, but also I have tried to teach him to relax and let things go when things don't go his way and not to get so angry as when he does he pulls a real stern looking face and point his head down but looks up to stare at who he is angry with and I think that puts stress on his eyes...

 

I know he feels uncomfortable with the eye rolling, but eyes or legs... none would be preferable...

 

fitforit...

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fitfroit

 

You have to start taking control of the inviroment your child is in.

 

Firstly give him the tools and confidence to wxplain his tics himself. Our son does the eye rolling and we told him the way to deal with questions from his peers is to say " I have a type of allergy that mekes me do it. I dont have any control over it, I just do it"

 

Kids are inquisative and once they know why something is happening then the tend to just roll with it. Kids are the most curious people on earth.

 

Secondly you need to start explaining what happens to friends or relatives that he is going to be around.

 

We have explained to people to expect it to happen and why it is happening. Then when it does no one questions itor remarks about it. Bring it out into the open then no one is embarressed.

 

Take contriol fitforit. You owe it to your bioy.

 

Good luck

 

John

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