7 years old boy has TS, Mom is heart broken

[patty]

lele,

 

i live in norther california in the greater bay area. fortunately, alternative drs. are available.

 

i took my son to see an acunpuncturist because his neck tic was giving him headache and neck pain. i also took him to a chirop to put the neck and back in aligmnent. i recently took my son to another acupuncturist for his returned asthma, it made it worse but it helped w/his facial tics.

 

i wish i can offer more help.

 

pat

[lele]

lele,

 

i live in norther california in the greater bay area. fortunately, alternative drs. are available.

 

i took my son to see an acunpuncturist because his neck tic was giving him headache and neck pain. i also took him to a chirop to put the neck and back in aligmnent. i recently took my son to another acupuncturist for his returned asthma, it made it worse but it helped w/his facial tics.

 

i wish i can offer more help.

 

pat

 

Yes, you did help me a lot Pat. I am thinking about to seek the help from an acupuncturist, but here is Richmond Virginia is almost impossible. I met a girl in China when I visited my parents, she was absolutely tic free after a long term acupuncture, I believe that the Chinese traditional way may work on TS, I wish I can find someone to help my son. I shouldn't move from Houston, TX, there is a big China town with a lot good oriental medical sources.

[lele]

Lele What do you mean you and your son never talk about ts? I know at the very begining of my 5yr dds onset she told me "I know something is wrong because I keep saying things over again and I dont know why. And my lips keep going over like this " I just wonder if you dont talk to him at all about his situation, theres no telling what he may think is wrong with him. Just a thought. I cant offer much help but will keep you in my prayers. angela

 

Angela, that is a good concern, I really wish I could communicate this well with my son, but I don't know how to do that without letting him feel nervous.

 

It was my little boy told me there must be something wrong and need to see the doctor when he started jerking his neck and clearing throat last May. I was so panic and couldn’t control my mood after I did a web search and end up with the devil TS! We went to see the child neurologist and talked a lot about TS and tics in front of my son with the doctor, by that day I noticed his tics was really bad, he can't even stop jerking his neck, that day I decided to stop talking the TS in front of him. I know it was too late, he caught up every single piece of information from that neurologist and told his classmates he had tics once he was in school................We send email to his school teachers about his situation, so far no kids joking on him, maybe I am wrong, who knows.

 

Even though we never talk about his situation, one day when he had really bad tics and his daddy asked him "do you know why it happened?", and he said "A neuron problem" I was shocked! I try to let him know it is just a minor problem, and mommy did it when I was a child (but I am not), it will be ok soon.

I do know it won't work, but I don't know how to really help him on accept it.

Even though I took him to the different kind of doctors I always find an excuse like cough, asthma, cold something to “cheat” him, I don’t let his daddy take him in the office until I talked with the doctor first. I know it sounds silly that I try to cover him that much.

He is a gifted child with very excellent academic performance, looks like he is very happy in school and didn’t pay too much attention on the tics even when his tics are really bad recently.

I am still struggling on how to talk this situation with him. Any suggestion will be helpful.

[Chemar]

Lele

as mentioned before, the Tourette Syndrome association has really helpful free booklets to give to the school, and also to share with your child

 

http://www.tsa-usa.org

 

it is my personal feeling that it is far better to talk to your child at the level of age comprehension they have, than to have this "mysterious" illness in the background all the time

[lele]

Lele

as mentioned before, the Tourette Syndrome association has really helpful free booklets to give to the school, and also to share with your child

 

http://www.tsa-usa.org

 

it is my personal feeling that it is far better to talk to your child at the level of age comprehension they have, than to have this "mysterious" illness in the background all the time

Thanks Chemar, I wll learn the skill on how to talk this with my little boy.

[lele]

This is what I read "For young children - to take to school - for his peers to read or have read to them by a teacher."from TSA

 

He told them that a lot of doctors are studying to find out what causes Tourette Syndrome. They do know already that it always starts at a very young age. It is much more common among boys than girls. It usually doesn't go away as the child gets older, but there is medicine that can help most of the people who have Tourette Syndrome

 

How can I give this to my little boy to encourage him? I wish it is not true.

[Chemar]

where was that on Lele?

 

if from the TSA then they should be ashamed to have printed something with so extreme and narrow a view

 

It is true that Tourette Syndrome, being genetic, doesnt go "away" as such...but certainly also true that in the vast majority of cases, the TICS diminish as one gets out of the puberty years. One still has TS and yes, one still will likely have some type of tic (or OCD. etc) yet it does show improvement

 

Lele, if your child had diabetes, or some other disorder that also may not "go away"...would you also not feel able to talk about it? or is it just TS?

[faith]

This is what I read "For young children - to take to school - for his peers to read or have read to them by a teacher."from TSA

 

He told them that a lot of doctors are studying to find out what causes Tourette Syndrome. They do know already that it always starts at a very young age. It is much more common among boys than girls. It usually doesn't go away as the child gets older, but there is medicine that can help most of the people who have Tourette Syndrome

 

How can I give this to my little boy to encourage him? I wish it is not true.

 

 

lele,

I don't think that is true. the part about it not usually going away as the child gets older, I think tht just means when they are a 'child", but I have heard several doctors tell me it gets better as they get older as in teen years. But I know there is no way to predict the future. I understand what you mean tho. I havn't said much to my son in his younger years, I think you will know when the time is to talk about it. Of course my son knew he had some habits, but we didn't call them tics until recently. you can take it one step at at time, just talking about the individual tic, and explain tht its like a habit, and it will probably go away after a while. when things get where it is bothers him enough to need more explaining, then you can take it from there. baby steps. only you can be the judge of how mature your child is and how much he will understand or relate to. And I absolutely understand about not talking in front of him with the doctors, I always went in to talk first, I didn't want my son to worry that something was wrong with him, and also didn't want the 'power of suggestion' to come into play, like if he wasn't doing a particular tic, but I had to tell the doctor that he did this or that in the past, if he heard me, then he might be reminded of it and do it. He is almost 11 now and he knows now tht he has tics and ocd and we are working to help them get better. Take it one step at a time, you don't have to tell or talk about everything all at once.

 

Faith

[lele]

where was that on Lele?

 

if from the TSA then they should be ashamed to have printed something with so extreme and narrow a view

 

It is true that Tourette Syndrome, being genetic, doesnt go "away" as such...but certainly also true that in the vast majority of cases, the TICS diminish as one gets out of the puberty years. One still has TS and yes, one still will likely have some type of tic (or OCD. etc) yet it does show improvement

 

Lele, if your child had diabetes, or some other disorder that also may not "go away"...would you also not feel able to talk about it? or is it just TS?

 

It is just TS which I feel so bad to talk with my kid. I am worry about if I mention tics with him will make him feel more nervous and then develop to OCD in the future since my son is extremely smart and sensitive. When he was 3 and half, he was a big fish and shrimp fun, he can eat a lot of sea food at once, but one day his teacher talking about water pollution and said the sea food is not safe due to the ocean has been polluted, after that he stop eating sea food including soft water fish till now. He was just 3 and half by that time. And when we went to see a doctor in china, the doctor said don't eat sugar and candy, he just stop eating his gummy vitamin even though he ate it since he can eat the real food.........

 

He is such a sensitive boy, can't imagine how he will react with after I say something about tics

[lele]

Here is the free brochure from the TSA webpage:

 

for young children - to print and take to school - for other students to read or have the teacher read to the class

http://www.tsa-usa.org/People/kids/matthew_tics.html

 

This the the part I don't like most

"He told them that a lot of doctors are studying to find out what causes Tourette Syndrome. They do know already that it always starts at a very young age. It is much more common among boys than girls. It usually doesn't go away as the child gets older, but there is medicine that can help most of the people who have Tourette Syndrome. "

 

Another information from TSA

FACTS ABOUT TOURETTE SYNDROME, Answers to Most Commonly Asked Questions

http://www.tsa-usa.org/imaganw/Fact_Sheet.pdf

"Is there a remission? Many people with TS get better, not worse, as they mature. In a small minority ofcases symptoms remit completely in adulthood."

 

I know this is not true since all my doctors keeping encouraging me to think as possitive as I can.

[Chemar]

Lele

 

putting those comments in context with the whole sentence is better. Those are accurate statements

 

remission is when tics totally go away. very few people with genetic TS have their tics ever totally go away. but for most their tics become so mild and infrequent that they are hardly noticeable...like with my son

 

honestly, if you go to a childrens forum of parents whose kids have cancer or other terminal diseases, tics will suddenly not seem so bad! someone suggested that to me when I couldnt break out of my doom and gloom over my son's diagnosis. it sure got my perspectives correct

[lele]

This is what I read "For young children - to take to school - for his peers to read or have read to them by a teacher."from TSA

 

He told them that a lot of doctors are studying to find out what causes Tourette Syndrome. They do know already that it always starts at a very young age. It is much more common among boys than girls. It usually doesn't go away as the child gets older, but there is medicine that can help most of the people who have Tourette Syndrome

 

How can I give this to my little boy to encourage him? I wish it is not true.

 

 

lele,

I don't think that is true. the part about it not usually going away as the child gets older, I think tht just means when they are a 'child", but I have heard several doctors tell me it gets better as they get older as in teen years. But I know there is no way to predict the future. I understand what you mean tho. I havn't said much to my son in his younger years, I think you will know when the time is to talk about it. Of course my son knew he had some habits, but we didn't call them tics until recently. you can take it one step at at time, just talking about the individual tic, and explain tht its like a habit, and it will probably go away after a while. when things get where it is bothers him enough to need more explaining, then you can take it from there. baby steps. only you can be the judge of how mature your child is and how much he will understand or relate to. And I absolutely understand about not talking in front of him with the doctors, I always went in to talk first, I didn't want my son to worry that something was wrong with him, and also didn't want the 'power of suggestion' to come into play, like if he wasn't doing a particular tic, but I had to tell the doctor that he did this or that in the past, if he heard me, then he might be reminded of it and do it. He is almost 11 now and he knows now tht he has tics and ocd and we are working to help them get better. Take it one step at a time, you don't have to tell or talk about everything all at once.

 

Faith

 

Yes, you are right, Faith, there is no way to predict the future , but all we can do is try our best to help him get better

[lele]

Lele

 

putting those comments in context with the whole sentence is better. Those are accurate statements

 

remission is when tics totally go away. very few people with genetic TS have their tics ever totally go away. but for most their tics become so mild and infrequent that they are hardly noticeable...like with my son

 

honestly, if you go to a childrens forum of parents whose kids have cancer or other terminal diseases, tics will suddenly not seem so bad! someone suggested that to me when I couldnt break out of my doom and gloom over my son's diagnosis. it sure got my perspectives correct

 

Yes, compare with the parents whose kids have cancer or other terminal diseases, we are so lucky!

 

I think I don't want my son to be perfect and I can accept it if he has mild and infrequent tics in the future. Who knows what happens in the future, I should stop torturing myself before I gat crazy.

[Chemar]

(((lele)))

 

all you can do is your best to have him taking wholesome nutrients in a good environment, and supplement with what helps

 

beyond that, acceptance brings a real peace for both the parent and the child, when it is something like TS

 

who knows, one day there may be the "cure" that totally takes care of it all...but till then it is best to make the most of your child and not let the tics etc become the primary focus. Do what you can, pray often, and enjoy your child while they are still young believe me it is so soon and they are towering over you and all grown up and doing just fine and all the worrying of the past didnt really help anything!!

 

keep learning and using that knowledge to do things that are good for your child's overall health as well as the tics, but dont let the tics takeover your time with your child. Enjoy!!

[kengela]

Lele What do you mean you and your son never talk about ts? I know at the very begining of my 5yr dds onset she told me "I know something is wrong because I keep saying things over again and I dont know why. And my lips keep going over like this " I just wonder if you dont talk to him at all about his situation, theres no telling what he may think is wrong with him. Just a thought. I cant offer much help but will keep you in my prayers. angela

 

Angela, that is a good concern, I really wish I could communicate this well with my son, but I don't know how to do that without letting him feel nervous.

 

It was my little boy told me there must be something wrong and need to see the doctor when he started jerking his neck and clearing throat last May. I was so panic and couldn’t control my mood after I did a web search and end up with the devil TS! We went to see the child neurologist and talked a lot about TS and tics in front of my son with the doctor, by that day I noticed his tics was really bad, he can't even stop jerking his neck, that day I decided to stop talking the TS in front of him. I know it was too late, he caught up every single piece of information from that neurologist and told his classmates he had tics once he was in school................We send email to his school teachers about his situation, so far no kids joking on him, maybe I am wrong, who knows.

 

Even though we never talk about his situation, one day when he had really bad tics and his daddy asked him "do you know why it happened?", and he said "A neuron problem" I was shocked! I try to let him know it is just a minor problem, and mommy did it when I was a child (but I am not), it will be ok soon.

I do know it won't work, but I don't know how to really help him on accept it.

Even though I took him to the different kind of doctors I always find an excuse like cough, asthma, cold something to “cheat” him, I don’t let his daddy take him in the office until I talked with the doctor first. I know it sounds silly that I try to cover him that much.

He is a gifted child with very excellent academic performance, looks like he is very happy in school and didn’t pay too much attention on the tics even when his tics are really bad recently.

I am still struggling on how to talk this situation with him. Any suggestion will be helpful.

.

lele,how are you doing?I hope Im doing this right so you get this message. I also told my dd some little fibs about our first couple of visits to drs , but she knew something was wrong and Ithink she felt much better once I told her theres a name for what she has and that lots of other kids, and adults have it and that shes not going to die, and she was also concerned about her being able to give someone else ts from her germs. She has a baby brother and when he was born of course we stressed the importance of being careful withthe baby espcially his head,and I must have been telling her that if his brain got very hurt he could die, and when she went for a cat scan she was worried she could die, because she knew they were looking at her brain.My point is you neverknow what theyre thinking unless you ask them.I recently brought up her neck tic by saying has your neck been bothering you? Shetold me how it feels to have this new tic. I only brought it up to her because this is her first really noticable tic, until then most of hers have been comlex and easy to miss if you arent looking for them,anyway I could tell she was nervous about kids at school noticing,and she opened up about it and Itold her that other people dont usually even notice her tics like we do. I let her watchthat movie Front of the Class a couple of weeks ago and I think it was good for her. as we watched it together I asked her what she thought of this or that and she said he wouldnt be a very good teacher making all those funny noises,and she said what if she was the teacher,(one of her vocals is saying the word why) and she was saying"why" the kids would all be trying to answerher whys but I told her that just like his student got used to his noises , she could just tell them right away about ts and then they would know she didnt mean why. I think is was great for her to see him struggle and become what he wanted and do it so well. Well I hope you can spark up a little talk withyour ds soon. oh yeah, another thing I wanted to mention is that the day aftershe watched that movie I had a weak moment and let her have 2 peices of frozen pizza that my husband was eating and while she was ticcing away from the pizza she said to me "Its ok if Im doing my neck thing and saying my words over" and I realized that yes it is ok and my husband is right it probably bothers me most of all. I just never want her to be in pain emotional or physical. Of course we will continue to search for help for our kids but I think we need to be careful to not let them think that we feel they are so bad off. well keep me posted I think you will both feel alot better after a good talk. Good Luck.