Hello.

Jamie - posted on 02/05/2009 ( 27 moms have responded )

81

2

25

I have an eleven year old son with Tourette's Syndrome. I would like to offer help to other moms who are facing the same challenges we have. I also welcome advice from people who have been through it.

MOST HELPFUL POSTS

[deleted account]

My son is now 14, but we have been through many ups and downs. I'm happy to say he is now doing extremely well, but would like to pass on a few tidbits we've learned over the years from our support group:



As far as medications, if you have tried the first line of defense meds (tenex, clonodine,etc) without success ask your doc about Abilify. It works tremendously on the tics as well as the ocd sympotoms. A few years ago I thought I was going to have to home school my son. We started him on Abilify and in seven days it completely turned his life around. If you didn't know he had TS you wouldn't even notice his very, very minor tics.



FYI about ADHD meds, I havent met anyone in our support group that was able to take these without having tics increase. Just something to think about. Non medicated ADHD is tough to deal with, but it is much easier than severe tics. Go to the national adhd support grp site at www.chadd.org for great tips.



PLEASE never tell your child to, "Stop it" when he is ticcing. They can't. It is like asking you to stop itching and itch. You can for a moment, but then you have to go back to it until it feels like it is over. They need a safe place where they know that no one will judge them or say anything whn they tic. That should be their home. If they are looked at as "odd" or told to "stop" by their family members the emotional toll of TS will be huge. Eventually you will have a severely depressed child on your hands.



By 6th grade (wish I had done it earlier) you or someone with the TSA should try and do a TS presentation to his/her classroom. The teasing that goes on is usually due to other kids not understanding what is wrong. Stop the teasing before it starts by educating the class and teachers. I presented to the entire 6th grade. I also invited the 7th grade teachers he would have in middle school the following year. It went tremendously well. Before middle school is a must. Middle school can be brutal.



Take a break yourself! Being a parent of a TS child is very difficult especially when you have other kids too. Remember to take a break yourself even if it is to just walk around the block each night for 10 mins.



Best of luck to you all. It can get better! Find a doc that really knows TS and the meds that it along with the ocd that typically comes along with it.

[deleted account]

I am new to the group here. I founded the Phx Tourettes Support Grp about a year and a half ago after my 12 yr old was diagnosed. It was a very lonely diagnosis for our whole family. I was shocked to find there was no support group in our big city of Phx so I started one. We now have 40 families that belong to the group. It is just wonderful. Your family can be supportive, but there is nothing like talking to other moms who are living with it day to day. The kids love getting together as well. They are able to realize they are not the only ones with TS. I'm so glad to see that you all have this group here. You can learn so much from each others experiences.

My first piece of advice would be to find a good TS doctor. Most docs to not know enough about TS to treat it. This is obvious from many of your posts. There are so many meds out there for TS. You should not give up after trying just a few. Someone mentioned Clondoine. It is an "entry level" drug for TS. Yes, it makes the kids tired and may help with very mild cases. It is typically just used at night because they do get so tired. Some use it strictly as a sleep aid for the kids. You need to use a very low dose so that they aren't tired in the morning.

Abilify is probably the newest drug being used for TS patients when this first line drugs do not work (Clonodine & Tenex) . It is typically an antidepressant, but it is being used off label for TS and OCD. It has been a miracle drug for many in our support grp.including my son. It falls in the class of neuroleptics. You may see some scary warnings on the label for this class of drugs, but usually the dose for TS patients is tremendously lower than what it takes for these reactions to occur.

As far as what doctor to see, I would recommend you go the the Chief of Psychiatry at your closest Children's Hospital. It is a neurological illness, however the psychiatry world is better trained in the medications to treat TS and OCD. You may have to wait a few months to get into to see this doctor, but it is worth it. Also, they typically take all insurance plans. The doctor you see can make an incredible difference in you child's life.

Someone mentioned blinking and throat clearing. Yes, this is TS. Throat clearing, sniffing, etc are considered a vocal tic. If these symptoms begin to affect the child's daily life you need to think about the higher level meds (neuoleptics). If you don't their self esteem could start to go down and depression could set in. I have seen this time and time again in our group. Very sad.

Someone mentioned having problems with eating. This sounds like Sensory Integration issues. I would Google this. One area of this is tactile dysfunction where they are very sensitive to textures, smells, and sometimes even textures of clothing on their skin. My son has to have all of the tags taken out of his shirts and has to wear his sock inside out so that he can't feel the seam. In addition to the internet the book "The Out of Sync Child" is outstanding, By the way most kids with TS have some type of sensory integration issue. There are 5 different types they can have. Tactile that I mentioned here is just one of them.

I also HIGHLY recommend that you or someone from the National TS Assoc.(support grp in your area) come in and present Tourettes to your child's class. Often teasing occurs because the kids/teachers simply don't understand what it is. Once I did a presentation in my son's class it was a whole different story. The kids are now very compassionate towards him. It is the not knowing that is the problem. There is slide show of a presentation on the www.tsa-usa.org site. This is the site for the National TS Assoc. Incredible site that you all need to go on and literally spend a few hours going through. There is so much info there.

Someone mentioned about "contracts" in school for their TS kids. These are typically called 504 Plans. More detailed plan is called an IEP. These are legal documents. Any accommodations that are written in these plans must be followed or the school system gets in a great deal of trouble. Please look up 504 and IEP's on the tsa site. Another great site to learn about these is www.wrightslaw.com. Your kids could have half the amount of math and spelling to do for homework and in some cases when tics are very severe NO homework required. We have several kids in our group with this accommodation. They also do not get in trouble for forgetting homework or speaking out in class. There is a list of accommodations a mile long that they could have.

Please, please remember that YOU are your child's advocate. You can not be an effective advocate at school or in the doctors office unless you thoroughly educate yourself about TS, OCD and ADHD. OCD and ADHD typically come along with TS. This illness does not go away overnight as you know. It is something we will be living with in our family for quite some time. It typically gets worse in the teen years and begins to improve around 17 or 18. It is also a good idea to give your close friends and family members some info about TS so that they can understand what is going on. There are actually handouts on the tsa site that you can print that are specifically written for teachers. ALL teachers and office staff that come into contact with your child should be educated about TS. This can be a requirement that you put into your child's 504 or IEP. You can give the school a copy of "I have Tourettes, but Tourettes Doesn't Have Me" and they can be required to watch it by a certain timeframe.

I must mention that the WORST thing anyone can say to a Tourettes child who is ticcing is, "Will you stop that!" These kids can not help their movements or sounds.The best way to describe it is to compare it to an itch. If you have an itch and someone tells you, "You can't itch that! Stop." You will still have the itching sensation. You will stand there distracted by the sensation. You can hold it in for awhile, but eventually you HAVE to itch it until it is "gone" or "feels just right". When this is finally done it is also an itch that is much worse than what it was at the beginning because you held it in. You will itch it very fast and hard.

This is what a tic feels like. They can hold it in, but eventually it has to be done. While they are holding it in they are very distracted by it. This is often why the kids seem to not be paying attention in school (on top of their adhd). Once they can no longer hold it in it is released, but it is much more severe and often considered an "explosion" of tics.

Well, I have gone on and on here haven't I?! I wish you all the best and hope you know that you are not alone in this. I hope that you all will continue to chat with one another. Again, it is amazing how much you learn from each others experiences.

Please remember to love and hug your TS child every single day! They need that reassurance that their home is a "SAFE ZONE" for them. They need to have that safe place that they can be themselves without anyone saying anything about their tics. It may annoy you a bit, but can you every imagine being them??? Having no control over what your body is doing all day and sometimes all night long. I just can't imagine....my heart goes out to every single one of our kiddos.

Take care and hang in there!
Karen

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

27 Comments

View replies by

Claire - posted on 08/16/2013

19

0

2

Hi, i have a10 year old boy, who cleared hos throat for about 9 months. I didnt make a big deal out of it, hoping he would stop. He had repetertive hand movement age 1 till 4 years old. The doctor was convinced he may be autistic. He passed every level, so hear i am. The throat clearing has stopped and he sniffs, then neck stretching back and foward, he also has startes to shoulder dance we call it. Now its halfterm we have noticed him getting far more, husband can now understand me. As a mum you know if there is something, i just hope he can calm them down. I feel its time to get him assessed again. Has anyone had the blood test done. I would like to say what a confident boy i have. And i would love to make some solid friends.who understand where im coming from as a mum. Thankyou. From claire

Nelly - posted on 09/09/2012

8

0

1

Hi! I am new to this group and need some advice/opinions.



My 6 yo has been sniffling and clearing her throat for approximately 1 month now. The sniffling started in August, when she was taking swimming classes. I thought it was related to the swimming. A few days after the sniffling started, she started clearing her throat. I asked her if her throat was bothering, tickling or hurting her and if her nose was bothering her as well. She said no to both. I asked if she could explain what she was feeling that was making her sniffle and clear her throat and she said "nothing".



About three weeks ago, she also started stretching - both arms and legs, feet and hands pointy, stretched out as far as possible. Sometimes, stretches out like in the form of a star, other times, straight out in front, or tip toes and fingers pointing down when standing, etc. This happens when she's sitting, walking, and so on. She can't explain why she feels she needs to do this, she just has to.



There are days when she'll go long periods (hours at a time) without doing one of these behaviors, sometimes she'll won't do any of them. But they always return. Other times, she could be watching a video or movie, eating , playing, etc and the sniffling and clearing throat are non-stop. Then she could be reading or playing with legos, or any other activity and she'll be complete fine.



I try to ignore it, it's very hard to do, but I try. I ask her if she can control it - tell her brain to tell her nose and throat and arms and legs..... her dad has a harder time ignoring it. I don't want it to get worse, but wonder if this is just a "bad habit" - it concerns me that there are 3 at the same time.



Anyway, we have not yet taken her to see a Dr...(waiting to clear up issues with our insurance), but wondered if anyone out there could give me an opinion as to what they think this might be. I would greatly appreciate any feedback.



Thank you.



PS - I should add that she I have not noticed any of these behaviors while she sleeps and she is able to sleep through the night without problems. The throat clearing and sniffling, often go together, sometimes in a pattern, other times randomly. Bath time often alleviates the behavior. There have been a few times where I convinced myself she sounded stuffy and so I rubbed some vicks on her chest and nose to alleviate it and the sniffling would cease for a short while, but the throat clearing (if present) would continue - after the vapors wore off the sniffling would continue.

Jamie - posted on 09/28/2011

81

2

25

Pattyann there are some books available written by young girls with TS about their struggles. These would be a great place to start. They are listed on TSA website. There is also a newsletter available.

Jamie - posted on 09/28/2011

81

2

25

Pattyann there are some books available written by young girls with TS about their struggles. These would be a great place to start. They are listed on TSA website. There is also a newsletter available.

Pattyann - posted on 09/25/2011

12

0

0

Hi, I have a 14 year old daughter with tourette's. I could use all the help i can get. We certainly aren't getting any help from the school and she is struggling. I just want her to have fun in school and be as normal as possible. She has only been diagnosed for a little over a year now. It is hard enough to be a teen without this type of difficulty. It would be better for her if we could find other teens with similar problems.

Jamie - posted on 08/01/2011

81

2

25

The TS association has a newsletter for the kids that they can receive that features other kids with TS. There are online support groups and chats. Some cities have support groups that meet as well. Do some research for your area. Thanks for joining us and good luck!

Pattyann - posted on 08/01/2011

12

0

0

Glad I found this although it doesn't look very active right now. I have a 14 year old daughter that was diagnosed with a sever tic disorder last summer. This summer the diagnoses was changed to tourettes. It is so hard for her. Her tics can be very large and not easy to hide. She is better at it now than she used to be. When the doc first saw her he said that her tics were the worst he has ever seen. We tried the meds, but she did not like them and they made her feel very depressed. So, now we just try to keep her as calm as possible and ignore the tics when they happen. She is an amazingly talented girl. She sings, she is very musical, she performs. She just struggles with the perceptions of the other teenagers. We have thought about home schooling, but really don't want to do that if we can prevent it. The doc says we can't teach her to hide because she is having a hard time. Does anyone know of a chat room or group of teens that she could talk to about her problems? I just think it would help her to know that others are going through the same things.

H.K. - posted on 07/29/2011

6

1

1

Looking for support and advice for 9 yr old son diagnosed with TS (specifically corprolalia)--how to manage this in public.

Irene - posted on 06/15/2011

4

8

0

In response Amanda, yes yes yes! It is amazing to me (and I chose my battles wisely not caring what anyone thinks at this point!) that kids can survive on the things they do. My son is eight and cannot suddenly stand the sight of cole slaw, pudding, yogurt (which he used to love!) etc. Weird. What else?!

Jessy - posted on 08/15/2010

27

1

5

I would like to say that anyone on here is welcome to reach me via my Facebook, if they would like to talk or have any questions at all. I am a single mother of 2, and a Family Advocate

Hollie - posted on 07/01/2010

6

29

0

i needed to hear that about the dysgraphia alot i have the same issue its like if they cant phycally see an issue than it must not be one

Jamie - posted on 06/30/2010

81

2

25

Make sure you utilized the computer. Many Touretttes kids do their best work on the computer.I know my son does. He started taking spelling tests on the computer in third grade and turned Cs into As immediately.

Hollie - posted on 06/30/2010

6

29

0

i have a 9year old son with tourettes syndrome and we are facing challenges and decided to home school i am defiitly learning how to do this and so far i stink. well i am looking for advice and i may have gone thru something that i could be of some help to someone else

[deleted account]

Linda, I'm so sorry your neck tics can get that bad. I can't imagine. I have heard that Botox can be used for neck and shoulder tics. You need to go to a Movement Disorder Specialist for it, but I've heard they work. It must be exhausting and painful by the end of the day.

You mentioned sensory integration issues. Tactile to be specific. My son has this too. He can only where one brand of shirts, only shorts (even in the winter!), socks inside out so he can't feel the seam, no tags in shirts, the list goes on and on.

You are right about educating the kids as to why they tic, but also educate their class as soon as the tics become apparent to others. I actually went in and requested that I present what Tourettes was to the entire 5th grade as well as the 6th grade teachers that my son would have the next year. We held the assembly in the library and it went over AMAZINGLY well. The kids listen the entire 45 minutes and asked excellent questions. Our TS kids are teased by others who don't understand what TS is.

Once the others know or "get it" it is less likely that they will make fun of them. No one has teased him since my presentation and they are all now very accepting of it. They realize it is just part of who my son is.

Go to www.tsa-usa.org for the new classroom presentation that you can give to your child's class. Their are slides and everything. There is also a DVD that shows and example of one. If you do not feel comfortable presenting, ask your school nurse if she would do it. If not, to your local TS Support Grp. I'm sure there is a mom who has done this before. The support group is also really important for your child. It helps them realize they are NOT the only ones.

Best of luck!

Linda - posted on 05/05/2010

2

0

0

Hello, while doing more research on tourettes I came across this message board and signed up : ) I am a mother of 4 and I have tourettes. The onset was at age 15 and I have had this for going on 19 years. two of my boys also have tourettes, the older of the two no longer show symptoms, the youngest has three tics currently. I am constantly researching tourettes as I have been told that mine will most likely never go away. Many children who have tourettes stand a good chance of the symptoms fading away by their 20's, or so I am told and hold out hope for my boys. Boys are more likely to have the gene passed down to them than girls. I have lived with the pain, embarrassment and frustration for a long time and hate to see my children or anyone else suffer this way. Alot of people assume that in order to have tourettes you must have both the vocal and motor tics. I have 6 (7 if you want to count the fact that my neck has two different tics that it chooses from) different tics that come and go as they so please and none of them are vocal. There are several different triggers that can agitate a tic, from stress to sweeteners, caffeine, smoke, the list can go on and on and what may set one person off won’t necessarily set another off. The best thing you can do for your children is to teach them that we are all different and try to educate them on why they tic. Kids at school can be cruel…and teachers often don’t understand. The best you can do is try to educate them on what TS is and teach your child that although he/she has TS that doesn’t define who they are, they can go on to do amazing things in life. And yes, in life there are far worse things that you or your child could be deal with, but until you have personally walked a mile in the shoes of someone who has TS with the pain, the embarrassment, and the frustration it isn’t fair to downplay TS. TS may not kill you, but in many ways it defines who you are. There are some days my neck decides it wants to twitch so much that I would rather hit my head against a wall so I feel I have the control for once. It’s like living in a body that you don’t control. TS can also be associated with OCD and LD. I also have the tactile issue, there are several textures that I cannot touch such as unglazed porcelain, chalk, flour, stainless steal etc. It is a pain that everything I buy I must touch first to make sure I will be able to touch it in order to use it. luckily this has not been passed on to my boys! I wish all of you the best of luck!

Cynthia - posted on 03/23/2009

12

12

1

Ryan is the oldest of several siblings (his father & I are divorced so he does have many in his extended fam). We have seen tendencies that follow TS but nothing else, he has one full sister. Ryan was a very good student in school & awesome athlete. He was a starter on BBall, starting QB, etc. He has OCD so he excelled in sports because he obcessed about it. When he went off to college right off the bat he couldn't handle it. He had a football scholarship and I had to move him home, he got physically ill from his tics. He went from a community that knew him well and accepted him to somewhere that didn't know him and his tics. It was very difficult for him. He ended up drinking a lot, trying to cope, a lot more tears..."why me" thing. It was very hard for us to deal with. I used the "hard ass" approach. "Do whatever makes you happy. I will accept your decision, but if you're in my home you attend classes or have a job" He chose partying all night and sleeping all day. So he was out on his own. It was hard to do but it worked thank goodness. He went to work for his dad for 2 years, paid his own bills, and decided he wanted more of life. I love him dearly but I couldn't just feel sorry for him and make excuses for him. Looking back now I'm glad I did it but it was very scarey. He calls almost daily. He is no longer on meds. He says they make him tired and he can't concentrate. We still see the tics more often when he's stressed like at finals for school. He's a very good student, hard worker, and very loving towards his siblings and family. We went from a community of Ryan being the only one diagnosed several years ago...recently when I talked to our local rep with the school she now has nearly 20 diagnosed in our district with Tourettes. We live in a small rural area. Makes you wonder. All I can offer for advice is keep your head up, take one day at a time, make the best of it. We laugh now. My daughter if you sniff she has to sniff. Ryan used to slap the table if I did. You have to laugh or you will spend all your time asking "why me". My mother always says God chose you because no one else could cope. My best friend tells me the same thing and she's watching her 14yr old son die from MD so I find myself very fortunate...there's a lot worse things as parents we could deal with.

Jamie - posted on 03/23/2009

81

2

25

Its good to hear from someone whos son is now in college and seems to have done quite well with ts. My husband and i were just talking about how it will effect him in college or if it will fade by then. Does anyone have multiple children with ts, we have two more young boys 3 and 1 and are hoping they will not be affected.

Cynthia - posted on 03/22/2009

12

12

1

I have a 22 yr old son with TS diagnosed in 7th grade. We've had many challenges over the years and shed many tears. My son is a very loving successful individual. He is in his first year of college and is going to go onto to be a teacher. We've dealt with teachers, peers, community, etc. Some people can be very cruel but we've go thru it all!

Kristin - posted on 02/26/2009

10

9

1

I grew up with TS, and had a cousin and uncle with it too, so it was no surprise when my now 9 1/2 year old son had TS at 3 years old. It has been trying with teachers, but we have been blessed with some understanding ones. I always send them an email before the year starts telling them his current and past tics, to avoid having him in trouble for noises he can't help. I also direct them to the tsa-usa website. They have great info for anyone, but also have a section specifically for educators. We also tell all of the art, music, and PE teachers, and ask that they all inform substitutes so that he doesn't get sent to the principle's office for lack of knowledge. Be proactive, and don't assume that the regular teacher tells the specials teachers, or that the information is passed on to the next teacher for the following year. It rarely is. I knew how hard it is being a kid with TS, so we made sure he has a full understanding of what he has. He has openly shared in his classes, and all of our friends and relatives have been educated as well. This helps avoid all the consant questions like if he has a cold, or always telling him he must need his hair trimmed since he shakes his head. He is not embarrassed because he understands it so well. He also knows that not many people know about it, so it's better to tell them about it instead of being frustrated by their ignorance. I highly recommend the tsa-usa website to anyone and everyone! I have found that educating other people has helped my stress level in dealing with the tics, because the more I talk about it, the more I internalize the information and really understand my son and have empathy. And that's coming from someone who had it! Share share share. It's not embarrassing...it's just like a sneeze that you can't hold back!

Jamie - posted on 02/17/2009

81

2

25

My son shares alot of those issues. First the food. He is also very picky. He will not eat things if he sees someone touch it or thinks someone next to him might have spit when they talked. It is getting better as he gets older. I can usually talk him out of those thoughts. I would pick your battles on the food issue. Give him a multivitamin and don't worry as long as he is growing. He also has trouble with sleep falling asleep mostly. Some times tics get worse then because they kind of delay them during the day while they are busy. Talk to him about a cool down time where he focuses on releasing his tics before he lays down. When he was on clonidine that help him sleep but it was hard for him to wake up so we stopped it. Alot of the meds if taken at night will help him sleep, talk to his doctor. We have not had much luck wih meds. The school problem is one that I feel has the biggest emotional effect at this age. If a teacher embarasses them about their tics they can remember it forever as can their class. I would recommend getting at least a service agreement which will be given to the teachers every year. If you need help contact your states TSA chapter. I live in PA and they will even hold an inservice to educate the teachers privately, at the districts expense not yours. Don't forget your child is entiltled to special considerations. Part of Ryans service agreement is a tic pass, which means if he needs to release tics he can leave class. Email or call any teacher that gives you the smallest reason, just to remind them. If you show them you are watching carefully they will do a better job.

Amanda - posted on 02/16/2009

10

25

2

hi my 13 year old son has tourettes we first noticed when he was 2 with the blinking, now we have full body jerking which really drives him mad, most of his friends no as it is very noticeable now, if any one comments he shrugs it off or laughs with them. I however have a number of issues with his school and worker, his school being that teachers don't communicate with each other and one teacher gave my son detention for disturbing the class with his whistling as he hadn't been informed about my son, My son also has problem sleeping and can manage with 2-4 hours sleep a night, he is also very very fussy with he food he will not eat food he doesn't like the look of, wont try anything new an can live for days on cereal, bread, fruit & pizza. is anyone else's child like that?

Jamie - posted on 02/11/2009

81

2

25

My son always had some tic that involved his throat or his nose. It changes all the time. We ruled out everything before they would call it tourettes. He was allergy tested, skin testing was not fun. Took allergy meds. Then had had his tonsils and adnoids out. Nothing worked. Even now I want to tell him to stop but I know even if he holds it in it will be worse later. Most of his friends don't notice, they are boys after all. But he has had different teachers comment on it. Mostly support classes like music and art. Sometimes these teacher are left out of the loop when his service agreement is handed out at the beginning of the year. (That is a list of adjustments the school has to make for him. I had a member of the Pa tourettes assoc. come to his school in third grade and educatd his principal who I felt was very ignorant of the truth about his codition. It was wonderful. That service agreement follows him throughout schools and we adjust it the any challenges a grade has.)

Kristi - posted on 02/10/2009

3

2

0

Hello, I have a five and a half year old son that started making sniffing noises about 8 months ago. Then at the end of December 2008 he started to blink REALLY hard. I took him to the doctor and they tested him for strep. Negative for strep. Then the doctor told me not to worry unless my son had these so called "transient tics" for over a year. Well, this week my son started to sniff in really hard then sniff out and clear his throat twice.... constantly! I would ask him to please stop but then it seems to get worse. Does this sound familiar? Should I get a second opinion from another doctor? Thank you for your help.

Jamie - posted on 02/10/2009

81

2

25

I have trouble with teachers understanding the other issues kids with tourettes have other than the tics, like the dysgraphia.

Kelli - posted on 02/09/2009

2

3

1

Hello, I have a ten year old son with Tourette's Syndrome. He was diagnosed while he was in the 1st grade. We have overcome many challanges and also welcome advice.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms