I'm new here...

Jenna - posted on 11/14/2008 ( 26 moms have responded )

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Just saying hello, I'm fairly new to the whole Facebook thing! My son was diagnosed with Tourette's about a month ago. He's 6 years old, and has had a variety of tics that have come and gone with increasing frequency over the past couple of years. Right now we're trying to find a medicine that will lessen the tics. Clonidine isn't working, if anything, he seems to be worse. Could just be that the tic was getting worse as we put him on the med. So he starts on Elavil next week after he's weaned off the other. Anyone with experience with Elavil?

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I know that a stressful event can bring things like TS to the surface. For my son stress was what triggered it. It also gets worse in stressful situations.

Chantelle - posted on 02/02/2009

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I'm new here tonight and am learning a lot from you all. Thanks! I have a 5yr old son who I'm strongly suspecting may have TS. He has tics, that's for sure and has for quite some time. Since he just added a verbal squeek to the mix, we're starting to "see" what may have been there all the time.(Grabbing himself, neck twitch, clearing throat, odd finger movement when doing puzzles and the like,) I am wondering what you all would suggest we do next. Are there good links out there that anyone would suggest. I wouldn't mind doing a bit more research before heading to the doc...presuming I should do that soon. ?? Our son was adopted so getting much more biological info may be tricky. Therefore I'm looking for other things that will indicate if he does truly have TS. I did read someplace that extreme stress in the first trimester can contribute. This would definately be the case for my son. Doe anyone know anything more about that? I'm thinking for him this could be significant info to know more about. Thank you so much!

Kristine - posted on 01/10/2009

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My child ( I wrote above earlier) has TS caused by PANDAS a rare pediatric neuropsych disorder associated with Strep. I just found out today I have strep which means my 8 year old must have it again. It does not manifest itself like normal strep with a fever or sore throat, just goes to the brain causing Tourettes symptoms. The ticking and noises were very strong yesterday and today. This is a very bad strep year for children as I was told by my doctors office and my son's doctor. Unfortunatly, when my son goes through this, we backtract academically. I am going to consider homeschooling him myself when I go to the child study meeting on Monday. This teacher he has is very nice, but just doesn't get that my son when he has active tourettes, falls apart academically and needs accomodations. He actually asked my son if he wanted to know what he got on his math test in front of the class, he said sure, and the teacher told him he got a "D". Devastating to him as he was a straight A student. Our only hope is that the neurology group is getting his tested ASAP next week rather than our scheduled day of May 8th. They are afraid to treat him with meds right now which does concern me that there is something else going on. Also, i noticed he seems to space for a few seconds and while his head and body are still, his eyes drift as far to the right as they can go as if he is looking at something right next to him.

Kristin - posted on 01/10/2009

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Hi everyone!  I just joined the group tonight and have really enjoyed(if you can call it that:-) )reading the comments.  My son Joseph is 9 and his tics began around age 4 with the birth of his brother.  He was diagnosed with TS at the end of kindergarten.  We have not tried medication as of yet because his tics do wax and wane pretty regularly.  The worst one so far occurred in first grade and was a grunt/throat clearing sound.  That one was very stressful for all of us.  However, that one only lasted about 4 months.  He fluctuates among sniffing, neck jerking, and licking his lips untill he looks like he has a red mustache from them being so chapped.  So far we have had excellent luck with school.  I would like to comment on Patricia's message about her daughter being made to go to a special class.  I would suggest checking into the rules for your school system.  I think it is heart breaking that she is not being allowed to be with "normal" children(although ours are very normal!!)  Adjustments can be made so she can be in a regular mainstream setting.  Teachers and administration have to want to be accomadating and sometimes THEY need education about TS.



Anyway, that is my soapbox and I'll get off of it now!



I am curious if anyone has more than one child with TS.  My 5 year old has had several tics for almost a year.  The pediatrician does think it is TS but we have not gone to the neurologist as of yet(doesn't seem necessary if we aren't going to use meds).  We do know several children with TS but no siblings.



Thank you so much for starting this group.  It is wonderful to read of others with similar experiences!

[deleted account]

Oh... that just reminded me that in gr 4 I think Ryan started a new school and we did a movie for the class on TS the teacher found at the library. It worked great! Kids are so accepting when they know what they are dealing with!

Genni - posted on 01/03/2009

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Dana yes I did see that movie. I thought it was great and I also remembered that as a child his Principal explained his condition to the school. After that school seemed more bearable for him. That being said, I will speak to the teacher and see if it might not be a good idea to let the class know what is going on rather than them wondering why he is sticking his tongue out "at them", or purring. Thank you for pointing that out. Sometimes I think I get more nervous than he does. As far as the "putting a wall up" thing, that could very well be. He is just so much different than my other two children that sometimes I need someone else to point out the obvious. Thank you for responding!

Dana - posted on 01/03/2009

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Genni, I agree with Cindy that people are much more understanding when educated. I also tell my son that when he meets someone new and they start to look at him strangely he should just explain to them about his condition and that he can't help it. Luckily Matthew has an upbeat positive attitude and has several friends, so it hasn't really been an issue yet. Maybe your son finding fault in the other kids is a defense mechanism for him and his insecurities. I hope I'm not out of line but maybe he puts up a wall to protect himself from having his feeling hurt. Maybe it would be a good idea for him to just explain his tics to the class. Have you talked to his new teacher about your concerns? There was a movie on tv about a month or so ago about a teacher with tourettes and how he persisted when no one would hire him. I forget the name of it but it was very good. Did you happen to see it?

Genni - posted on 01/01/2009

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My son is 9 years old and has TS. When he was 7, his tics were really bad. He had about 10 motor tics and 3 verbal tics. My Dr told me that they may get more mild and then come back. Well they did seem to get better for about a year, but now they seem to be getting worse. He will be starting a new school on Monday and I am really worried. Right now he is purring, turning his head back and forth,sticking his tongue out, sucking his shirt,and the list goes on and on. Any suggestions on how to help him and his classmates adjust to the change? I am also concerned that he really doesn't have any friends. Is this normal? He seems to always find faults in them. Lunch can be a problem too because he seems to get grossed out easily and throw up his food if he sees another kid talking with food in their mouths. I am really nervous for him in this transition and I have never had anyone to talk to about him. I am so glad I found this group.

Julie - posted on 12/09/2008

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Patricia, I'm assuming your daughter is on an IEP (individual learning plan) or whatever they call it in your state? Did you agree with your daughter being separated from other peers without disabilities?

[deleted account]

Hi everyone! My name is Cindy and my son Ryan is 14. He was diagnosed with severe Tourette's when he was 5. We have been through some really interesting years! One thing that I have found works the best for Ryan is information. I have taught Ryan everything I could find about TS and when he meats someone new, he will explain to them what is "wrong" with him. I feel that people are much more understanding when educated. He has never been teased because of it.

It seems that Ryan was always a bit different. Looking back he has shown signs of OCD since he could crawl. Never happy with a mess. 1 rice crispy on his high chair was not acceptable, things like that. I always thought it was something he picked up from me and never saw an issue with it! When his tics started, it all happened so gradual, I never noticed. My sister had to point it out.

Ryan had been on risperidone and Clonidine. Both meds made him sleepy all the time, but I could never get anyone to try anything different. He was like a zombie! Now that he is 14 we have decided to let him make some choices on his own. He just doesn't want to take them anymore... so what can I say? His tics are still present, but he has to deal with them. I simply told him if he starts falling behind in school, we will need to reevaluate the meds. (he has been on the O-3's for 2 weeks.. I haven't decided how well they work yet)

The other thing I wanted to point out to everyone, is that tics will not be wished away. They can 'save' them up to let go later, but no matter what they have to let them out. Ryan became good at saving them up until after school. We had to work with the school about homework since after school was his 'tic time', and would sometimes be very tiresome for him.

I would like to list some of his tics and more info for all of you, but my goodness! 20 Days till Christmas! I gotta go! LOL

Take care all!

Cindy

Patricia - posted on 12/04/2008

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I have a daughter with TS plus. Very frustrating. Each of her disorders are mild but when put together make things difficult for her. I found it a lot harder though to adjust to her not being in a regular classroom. They schools say becasue she has TS, OCD, and ADD she needs to be in the special classrooms. In her new class in grade four half of the children do not even talk! I guess I just wanted so much more for her.



Medication - I spent two years doing the trial and error. The side effects I found were worse then the tics and other stuff. She has been off now since June.

Kristine - posted on 12/04/2008

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My son is supposed to start clonadine on Friday. He has mild TS but because of a stressful start to 3rd grade with a horrible, uneducated, unflexible teacher, he shutdown and the tics started getting very frequent, very dramatic. He was put on Tenex which had the total opposite effects on him. He became manic for the fist hour. Became agressive during different times of the day. I took him off. I also had a hard time getting him to wake up for school, and he walked around like he was "stoned". His attention was better, but for the personality changes we saw, it was not worth it. His tics also became increasingly worse that a relative (who knew about the TS) called me concerned that this was not the right med. Being in 3rd grade is hard enough with mild tics rather than very strong ones where people might notice it more. I am interested to hear about your success with Elavil if you have any.

Kristine - posted on 11/26/2008

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My son who is now 8 started having tics when he was 5 years old at the end of Kindergarten. He is now in 3rd grade. He was diagnosed last May with chronic tic disorder but a horrible classroom situation (bad match with a teacher who let kids bully and pick on him, who made fun of his terrible handwriting, and took away his lunch and recess for 3 weeks straight (not for behavior, because he was very well behaved) but for not writing neat enough and fast enough so he would have to finish or redo his work during those periods). we were told that if he had not gone through this, we may have never known he had TS. The stress level was horrible for him that the tics started causing soreness on his shoulders, neck and top of his back, he was getting headaches and stomach aches...major red flags for us. We just saw a new neurology group who discussed putting him on a low dossage (0.5 mg) of tenex. We decided to try it because our son asked them to "make the tics go away!" The tenex has made him manic after taking it. We never really saw signs of hyperactivity like you would with an ADHD child, so when he takes it at night, rather than go to sleep he seems to just talk non-stop. he also has complained about stomach aches. He has only been on this for a few days and these are probably side effects, but I need to check on that.



We did get his class changed, thank goodness! And, we are hopeful after the academic, emotional and social shutdown that he encountered this year, he thrives once, again!

Ashley - posted on 11/25/2008

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Jake went through the touching of himself. It was a short lived tic...thankfully. I encouraged him to concentrate on when he felt like he had to do that and then snap his fingers. He was able to do that. If we were at home, it wasn't that big of a deal but at school or elsewhere he was conscious of that particular tic. He's pretty much consistent on which ones he does now.



Lisa - my Jake didn't start with the "yawn" until he was 5. It was right after he got over strep throat. One of the many articles I've read said that some doctors believe there is a connection between strep and TS. Maybe it's just a big coincidence, I don't know. I don't know about his bio father's side of the family so I have no idea if it's from them....since the doctor's I've met with say that it's hereditary. No one in my family has it that I'm aware of. I've had success with the Omega 3's as well.



I'm so glad that we have this circle. No one else in my community is going through this and it's nice to have this group to be a sounding board. :)

Jenna - posted on 11/25/2008

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Good morning everyone! Its good to see several posts - it helps to know that my son isn't the only one going through this and to have other moms to talk to about it. I just wanted to give you all an update on Noah. I went to the store the night that I posted my last message, and I bought the fish oil supp. I was careful to make sure its the kind that's been through the distillation process or whatever to rid it of impurities and toxins. I figured it would probably not taste very good, so I put a little dot of honey on the spoon, and squeeze the oil from one capsule in the evening. He says the honey makes it taste ok, but sometimes he can taste the nasty fish taste. LOL But he takes it without a problem, and I have already seen improvement - when he was on the clonidine, his tics were almost constant by dinnertime, and they're very insignificant in the evening now. I'm going to email his teacher today, to see how things have been going in school.



I'm still not sure exactly how much he should have, but from what I read, its next to impossible to overdose on it, and an adult dose is 2 caps twice a day, so I think we're safe. And it is helping, so I guess that's the best gauge. Lisa, thanks for the info on the kids supplement. I'll have to see if I can find the Lil Critters ones once we're done with this bottle - his regular vitamins are gummies, and he loves them.



Noah struggles with being touchy too - he has had issues with that since he was like 3 years old - I still remember having conversations with his teacher that he just had a really hard time controlling his body and keeping hands to himself. And he gets notes from his teacher now every couple of weeks, and I'm sure she gives him several chances because she knows he's dealing with Tourettes.



Dana, I don't have any specific information on how he might change his tic, but maybe if you can get him to try patting or tapping his leg instead, or grip his pant leg instead of actually grabbing himself, if its the gripping motion that he needs to do. I would think it would have to be something that follows the same kind of motion - that seems to be hard for them to control, so asking him to completely change the motion might be very difficult. But if he can do the same sort of motion and just "adjust" where he's going in that region, maybe it would work! Good luck with the Omega 3 supplement because I really think this is the ticket - its only been 6 days and I can see a difference already! I know its difficult when they do things that draw a lot of attention - a finger tap might not be so noticeable, but when it involves a big movement or something "taboo" that's hard to deal with!

Dana - posted on 11/20/2008

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I'm so very happy that there has been such a great response to this group. I don't know anyone at all that is going through this in our community or at school so I look forward to reading the new posts, it makes me feel better. I'm also going to try the Omega 3. Matthew's tics are starting to increase again. Now he's back to the vocal tic along with the constant hand tic. He has the flu right now so that I think makes it worse. I was wondering if any of your (anyone's) son does the same thing Matthew does. It's kind of embarrassing...he holds his penis like he has to go to the bathroom. I read on a Tourettes website that it is a common part of Tourettes. I've been trying to explain to him that he needs to not do that...to do something else if he feels the urge. I remember someone else saying that their son can divert or change a tic. How would he do that? Any suggestions? I would really appreciate any advice.

Lisa - posted on 11/19/2008

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Ashley, my son is Jake too! His first tic was at 4 and it was the yawn too. We think he may have started tics as early as 6 months, but we are not sure. He would flex his hands out in front of him a lot. We were unsure whether it was pain due to his reflux. It went away quickly, but it makes me wonder if he didn't start the tics at an early age since I now know that tics do wax and wane.



Jake had a difficult time focusing early on, but started getting better last year in Kindergarten. He also was very touchy and goes through stages of touching and impulsive types of things. The omega's and time have helped. I find my son also needs to stay busy. I've been told that you have to keep children with TS very busy because it helps with the tics. If they get bored, the tics will come out more often.



It's nice to see that others have the same issues/struggles too!

Lisa - posted on 11/19/2008

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Jenna, I give Jake 2 L'll Critters Omega-3 Gummy Fish with DHA. They have them at Costco and they don't have any artificial colors, flavors or preservatives. I don't really like that they are gummy fish since my son doesn't get candy, but he loves them! It's nice that they are natural. I didn't want to get him the fish oil supplements, because I was afraid they would be fishy and he wouldn't want to take them. The L'il Critters brand is vegetarian. I have read different reviews on the internet. Some people say the vegetarian brand worked better and the fish oil supplements caused more tics. I just used these to start because I saw them at the store and I wanted to get them into him immediately. I find they have calmed him down, tics have diminished more and he can focus better on school work.



Yes, I feel the same way that the situation could be worse. I have friends with autistic children and I feel very blessed that my son is very bright, can verbalize, and show affection. I agree though that it is hard knowing that there is something wrong with your child and wondering what the future holds for them. We all want our children to have the best lives possible.



Good luck with your omega search! Please let us know if they make a difference.

Ashley - posted on 11/19/2008

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My son Jake is almost 11. He started ticking at 5. At first the neurologist said it was nervous tics because they were motor only. At about 7 he started with the vocal tics. I give him Omega 3 as well. It helps. Two years ago, he was put on Tenex. Just 0.5 mg per day. It made a world of difference. I've seen so many tics over the last 5 years. I've read any article I can find on TS. No one in his school has it, that I know of.

It is very frustrating to watch. One thing I've learned though is the tics will wax and wane. And what causes the variations changes. It could be food, lack of sleep, worried about a test, or just the fact that he is getting older. He was able to come off of his meds this summer before school started for about 3 weeks. But then he got walking pneumonia and all the meds he was on for that sparked the TS back up so he's back on his Tenex for now. I'm like Lisa though. I make sure he gets plenty of sleep, limit the sugar and processed foods, etc.

Jake's first tic was the "yawn". He does the head shake, the eye roll, and sometimes will whistle or hum. Focus is an issue sometimes at school. He does so much better if he can get up and move around in the class or do things hands on.

It's nice to know there are other mom's going through the same struggle. Good luck finding a medicine that works. The Omega 3's will help alot. :)

Jenna - posted on 11/19/2008

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My son has also started some kind of shrug thing, but its not really a shrug - if he's sitting against me, I can feel him popping his shoulder joint or something - very freaky! It worries me because I don't want him to cause physical damage to himself, but he doesn't seem to be bothered by it. He's also been doing a strange little laugh that I think might be a verbal tic. Its definitely not like his normal laugh, and he gets himself hyped up and acting silly so he can make the noise. This is such a strange experience for me as a parent. You're right, it does change so often, and the next tic is nothing like the last one. In a way, I'm thankful that this is "all" that's wrong with him, because there are certainly a lot of worse diseases that he could be afflicted by, but it is upsetting just knowing there's something wrong with my child. And because its really starting to affect his school day, it worries me too - he's a very bright child and I want him to be able to succeed.



I don't know any other kids in his school that have it. I did know of a family in the church I used to go to whose daughter was diagnosed around 8 years old, but they don't live around here anymore. How much O-3 do you give your son? From what I was reading, its sounds like I don't need to look specifically for "childrens O3" just a good quality fish oil supplement. The articles I was reading were very interesting - Noah has a very limited palate - thankfully what he does eat is healthy, but I'm sure despite taking a vitamin every day, he's missing those fatty acids that are supplemented with the fish oil. So that makes me hopeful that a supplement might really make a difference for him too.

Lisa - posted on 11/18/2008

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My son just started the school year with the head nods so I know what you mean. He also will blink his eyes, open his mouth in a yawn and it sometimes sticks like that, which is upsetting. He also does things with his arms,where he twists them around or shrugs themor holds them straight out in front of him. The most recent tic has been a burp like sound. They change so much from time to time. He is doing much better as long as he stays healthy by taking his vitamins and omega 3's and gets his rest. Do you know anyone else with TS? I don't know another child that has this and I don't see other children with this condition at his school.

Jenna - posted on 11/18/2008

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My son is doing a head tilt/nod thing, and we've also seen eye rolling in combination with it, while his was on Clonidine. That's why we weaned him off of it, the head nodding did not improve, and the eye rolling started, and by the time he was ready for another dose in the evening, the tics were almost constant. He's supposed to start Elavil tomorrow, now that he's weaned off of the Clonidine, but maybe we could try the omega 3's first. If it was just a minor tic that only happened occassionally, I wouldn't even worry about it, but it's increased a lot since this started a couple years ago. And his teacher said she can see a big difference in him since the start of the school year.

I hate the whole trial and error thing - the dr. didn't push the meds on us either, but he did say since it seems to be increasing and is starting to affect him in school, we could try meds and see if it helps. So after some hemming and hawing, we did. I will do some research on the omega 3 - thank you for the tip!

Lisa - posted on 11/17/2008

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Hi! My son is also 6 and was diagnosed with Tourette's in September. He has had a variety of tics that have come and gone with increasing frequency over the past few years. We have not medicated him at all. I have heard so many things about bad side effects. His Dr. is not pushing meds. on us either. We have tried Omega 3's. I've heard this can really help with the tics/focus/concentration etc. We started him on these about six weeks ago and it has made a huge difference. I have seen a considerable change in the amount of tics he is having and also his behavior. What type of tics is your son having?

Danielle - posted on 11/14/2008

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Your Welcome. Good luck, I have been there its frustrating and Its always better to go to someone who does know more about then a regular doctor.

Jenna - posted on 11/14/2008

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Ok thank you, I will keep that in mind. We see a neurologist in December, so we're hoping he might offer a little more insight than our regular pediatrician might have...

Danielle - posted on 11/14/2008

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One Med that is used for my sons Tics is called Orap and it has worked rather good. I hope this helps.

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