Transient Tic Disorder

[Jerseylicious]

Hi everyone!

I was wondering if anyone has any children that have transient tic disorder? Or do you have it yourself? I have a 6 year old girl that has it, and she has had it since she was 2. I am interested in hearing the different kinds of tics that people have. Basically I'm just looking for a little reassurance. Here's my story, I'll try to keep it as short as possible:

When my daughter was 2, she was licking her lips constantly. Then it went to a weird mouth movement. In time that mouth movement was joined by a hand movement, then a leg movement, all at the same time. I thought she was having seizures, and so at age 3 (when they seemed to be really bad) I took her to the E. R. They did a scan on her, and an EEG I think, and everything was fine. I was then referred to a neurologist, who ran some tests and made her do some movements, and then he diagnosed her as having the Transient Tic Disorder. So for the past 3 years they came and went, and they were not so bad, just basically eye blinking, lip licking, mouth movement, tongue movement...stuff nobody would basically notice. But yesterday she started doing something really weird. She'll put her head WAY back, like she's looking way way up into the sky, and then put her head all the way forward, putting her chin to her chest. Sometimes she does it 3 times in a row and her face looks like she's in pain but she assures me she's not. I really REALLY hate seeing this, it makes me VERY upset, even though I know she's not in pain. I don't cry in front of her but for the past two days I am constantly upset over it. I don't like seeing that happen to her, and this is even though I know she's not hurting. I KNOW it could be worse, there are children out there with cancers and seizures and other stuff....but for some reason this is very upsetting to me. As a mother of course you all can understand how you don't want to see your children having ANY kind of disorder. It really stinks.

Does anyone else have to deal with this? Or do you know someone who does? Just interested in getting other parent's perspectives. My husband says it upsets him to see it to, but not like it upsets me. He is rational, telling me she's not in pain and it doesn't hurt her...all this stuff I already KNOW, but I still can't help being upset.

Ok I'll wait to hear from you guys! Thanks for any info!

 

[CEDmom]

A few weeks ago I posted a thread about tics in children because my DD was having them. She was blinking a lot and also doing this thing where she'd run a finger under her nose and around her mouth. My DH actually picked up on it before I did and then we really saw how bad it was when we were watching a video of her dance recital. My DH did some research online and found information about Panda Syndrome. It's caused by strep bacteria and manifests itself in tics and other OCD behavior.

We took our DD to our dr and although her strep test was negative she did have swollen tonsils and a red throat. Given that and her other symtoms our dr decided to give her a course of antibiotics. They seem to have worked because her tics are pretty much gone. We're having a follow up with our dr next month and will request a referral to an eye dr to rule out any vision problems. We will also keep an eye on her because she didn't display any symtoms of having strep.

BTW, our dr hadn't heard of Panda but he was willing to try treating with antibiotics before sending her to a neurologist. I know this might not be what is causing your DD's issues but I thought I'd just let you know our story. Also, I've been told there is preliminary research going on that Turrets Syndrome may also be caused in part by the strep bacteria. Good luck and I hope you get to the bottom of this. It's so hard watching your child have issues and not be able to fix them.

 

[holycow]

Hugs to you....I can only imagine how difficult it must be for you.

HC

 

[TigerBear]

Is your child still being followed by a neurologist? Is she on meds for the tics? I definitely would express you concerns to a neurologist.

 

[Jerseylicious]

CED...yes I just found your previous post! Thanks for the encouragement...I will talk to her neurologist about this. Although within the past 4 years she has been on antibiotics for various things, but I will mention that to him.

HC thanks for the kind words. It really rots having to see your child have something (albeit slightly) wrong with them. She is so unbelievably outgoing and everyone absolutely loves her to death, so I know she will never ever in a million years lack for love and attention. She is the apple of so many people's eyes and that makes me proud. She is a strong-personalitied little girl so even if kids in school ever pick up on these tics, she would stand up for herself. Those are not things I am worried about at all. Again, it's just me overreacting and getting upset about it. Maybe *I* need a valium! LOL

Thanks again to you both!

Christie

 

[Jerseylicious]

Tiger....

The last time she was at a neurologist was 3 years ago. He explained about the transient tic disorder, and how as long as the tics changed and came-and-went, there's really nothing that can be done about them. Only if the tics became severe and interfered with her daily life would she have to go on meds. That is a last resort for me. However I just got off the phone with my mother and she suggested we just go back so she can be evaluated again and I agree.

 

[Irish Wake]

My 8 yr old son started rolling his eyes and for lack of a better description "streching" his eye balls. We took him to 3 different doctors and they said it was a "transient tick" and it would either go away, change to a different one or never change. After 5 months, he just stopped doing it. I'msure the same will happen with your child. Good Luck!

 

[JenDaveBrendan]

She'll put her head WAY back, like she's looking way way up into the sky, and then put her head all the way forward, putting her chin to her chest.

Wow - I could have written this same statement about my DS5. He started doing this constantly about a month ago. I took him to the doctor to see if something was physically wrong... there was nothing. The Dr. did mention that it may be a motor tic, and if it continues for a few months to consult a therapist (he thinks it may be stress related - we are making a big move soon - although DS is excited about the move, doesn't seemed stressed at all).
Last week in addition to the neck thing, DS has been arching his back (back and forth) in the same manner he does to his neck. It is really weird.Took him to the Dr. again (different one this time), and she told me not to worry about it, ignore it, and it will stop. I don't know whether or not to believe that.......
I totally feel your pain. Like you, I know there are alot worse things out there, but to see your child go through something that you know they will be picked on for, is extremely difficult. People have noticed the back and neck arches, and ask if he is okay. DS tells me he feels like he "needs" to do it. I am just very perplexed over the whole thing. And as much as I hate to admit it, sometimes I get annoyed with the behavior.
There is nothing more a parent wants than their child to be "normal", and anything that deviates from that is upsetting.
Good luck, hopefully the behavior will go away...

Jen

ETA: I didn't realize how old this post was until after I responded!

 

[Jerseylicious]

So how are everyone's kids doing with their tics? (Jen and I have been comparing notes.) My daughter has a new tic, where she pulls her entire stomach in & out and moves her shoulders side to side. This is so hard to understand, since not much is really known about it. Just took her for another eval last week, & I was told to keep away from chocolate, caffeine, and artifical colors. I guess this will be going on for a few years at least. Oh well, could be worse I guess. But it still stinks.

 

[Tigger&Belle]

I never saw your thread when it was first posted, but I have a son (now 16yo) with TS. I'd like to say that with all the serious childhood diseases that it's been no big deal, but that would be a lie. Let me see if I can find a fairly recent post of mine, which will share some of my feelings without me retyping. Here it is:


My `15yo son was diagnosed with TS when he was in 3rd grade. He started vocal and motor tics when he was 6yo, in first grade.

To be diagnosed a child has to do at least one motor and one vocal tic over the course of a year (or something like that). Ben's tics have waxed and waned throughout the years, but when he got closer to puberty they got a lot worse. We don't know what the future holds as far as his tics go, but there is much more to him than his his tics.

He is a bright, imaginative, loving, creative boy. He has been learning how to design websites and is interested in graphic design. He is also absent minded and gets lost in his own world, common in someone with ADD, which a lot of TS kids have. He's also a normal teenager, so he can drive me up a wall at times.

This summer he had the wonderful experience of volunteering at a week long sleepaway camp for kids with Tourettes run by Children's Hospital. Kids came from all over the east coast. To put it mildly, it was an eye opening experience. He got to see how severe TS can be (I would say that Ben's TS is moderate) and what some of these kids have to deal with. Some of them have a lot of anger and many of them are very sensitive to any comments said to them from other kids. Like I said, many kids have ADD/ADHD and OCD is also not uncommon. One boy just finished chemo for cancer (I think a brain tumor)--how much should one kid have to handle?

One thing that I'm thankful about with my son--his personality is such that he doesn't normally get down when people say things to him. It must hurt sometimes, but he doesn't internalize it. He knows that he can't help it and he really handles it well. If it were one of my older two kids I think it would be much harder on them.

My son told us about a pro golfer who spoke at the camp that he volunteered at. The golfers parents (or maybe his dad) never accepted his TS and wanted him to stop doing the tics. Can you imagine that kind of pressure on a kid? I know that can be the initial reaction of a parent before a diagnosis, but after it's clear what's going on, that seems criminal. Would someone punish a kid for needing insulin or eyeglasses?


My son just tried out and got a small part in his high school play. I so admire the fact that in spite of his tics he can get up in front of a crowd of people and still perform. Or at least hopefully he'll be able to--the rehearsals have just begun.

What would stop a lot of people just seems to inspire him. He's a lot more than his tics, even though that is a part of him! And he can't wait to go back and volunteer at the camp next summer--it was a wonderful experience that he's still talking about.

 

[Jerseylicious]

Tigger - Well good for your son that he is doing things and finding activities that he is loving and involved in!!! May I ask what types of tics he mostly has?? I hope he can continue being happy and getting through life as well as he is doing! How are his grades? How WERE his grades in elementary school?

I ask these questions, because one thing I hate about all this is not knowing the future. At my DD's eval last week, he ran through all the tests, and she passed them. (The walking, running, reflexes, eyes, etc...) She does not have ADD, and on her last report card she got straight A's and one B. Her tics are the ONLY symptom she has right now. I don't know if it'll get worse or better. I don't know if I should expect her grades to go down. I have no clue what the future will hold?? Wait and see, I guess.

Were you this perplexed about not knowing which way this could go??? Obviously we just have to take it day by day I guess. It doesn't make it any easier. But again I am happy for you that he is doing this well!!!!

 

[Tigger&Belle]

He's had a combination of various motor and vocal tics. He'll have one for a while and then it will go away and then another one will replace it. Motor ones are more common, I would say. Head turning is a big one. He has medication, but at his age it's his responsibility to take it and he's bad at remembering.

He also had ADD, but does not take medication for it. He has in the past, but it has actually made things worse--both the tics and made him hyper. He has had an easier time organizing himself in more recent years. He's very creative and does well in classes where that is encouraged--discussion type classes, writing, etc. He has a harder time with math and science, but seems to be doing ok this year. It's still early, though. In general he's an A/B student, but he does get some Cs on occasion.

In elem school he had a harder time with organization, which affected his grades. He did ok, but didn't do as well as he could have.

I do wonder what the future holds. Mainly, I worry about him dating and finding a wife who will understand. That makes me tear up just thinking about. He's such a doll and so bright and it kills me that some people won't be able to look past that. Breaks my heart.

I worry a little when I think about a job, but not too much. I think that he will work that one out. He has a lot of interests and I really think he'll figure out what to do. He has an amazing imagination and I think that he will be successful.

 

[Sherri]

I feel for the OP and everyone else here who has posted about the tics.
My son had the had turning tic when he was in first grade. I had no idea what caused this. I was heartbroken, I was worried that maybe he was under stress. After tests to rule out real bad things, we were diagnosed with the transit tic disorder. He went through peaks and valleys with it.
He is now in 9th grade and 15. I am happy to report that he has not had a tic since 5th grade.
I was told by the Doctor from the start, if it interfered with his every day life and caused problems socially, we could use meds. He did give perscription just in case. When I read the possible side effects, I knew that I couldn't chance it. Now remember that was many years ago, so I am sure they have better things to treat it now.
I sure wish I would have known about the Dis board then, I wouldn't have felt so all alone when we were going through this. This is a wonderful place to come to for support. What a wonderful group of people.

 

[Tink33]

Tigger - Well good for your son that he is doing things and finding activities that he is loving and involved in!!! May I ask what types of tics he mostly has?? I hope he can continue being happy and getting through life as well as he is doing! How are his grades? How WERE his grades in elementary school?

Were you this perplexed about not knowing which way this could go??? Obviously we just have to take it day by day I guess. It doesn't make it any easier.

I remember having these same feelings when my son was diagnosed back in first grade. How about a success story. My DS15 is taking mostly honors courses and even one AP course this year. On his first report card this grading period, his GPA is 3.73 He is a sophomore, but plays on the Varsity Hockey Team. He has a group of close friends (of both sexes) that come to his games even though they are played 40 minutes away. I don't think I could have been more blessed.

If you ever need someone to share a laugh, a tear or a shoulder... I am only a pm away.

 

[tamiruelas]

Hi there i wanted to talk about tics and chiropractic care, im not sure if anyone else has talked to a chiropractor or not for their child but here is our story as it sits right now.

My son is nine years old, last november we started noticing him humming, that led to doubling of words, and pitch problems. We went to our doctor who told us it was probably for attention or just a habit. She would not refer us to a neurologist. Around christmas break it all seemed to go away, but then came back again but this time it was rolling of the eyes, he kept rolling his eyes to the side and up and blinking alot, this was the worse it had been and we were really getting scared, beacuse our doctor was no help my husband decided to call his chiropractor in the hopes that maybe she knew something about this and maybe knew something that could help. Her first question was if he had ever fallen when he was younger, well yeah most kids do, but once he did fall pretty hard and had a huge bump on his head, he had to go to the er but all was ok, but now that we thought about it, right after that time we noticed he was lifting his shoulders alot and putting his head back, we thought at the time that he was trying to touch the bump on the back of his head, after awhile everyone told us it was probably a habit and he'll grow out of it, well like i said he did, up until last november when he started doing all these things again, well after talking to our chiropractor she told us to bring him in to get some x-rays and see whats going on with his neck because he could have messed it up due to the fall he had when he was younger, the x-rays show that he need indeed have neck issues, she told us these issues could cause some of the things we have been noticing him doing because of the nerves that are in the neck, so we had her adjust him to see if by some chance it could be that, although we were pretty much sure that when we could finally get to a neurologist they would diagnose him with a tic disorder, after the first adjustment the next day his tics where the same if not a little worse, he was rolling his eyes constantly to the point that he was having trouble concentrating on anything, and by the end of the day his eyes where hurting, the chiropractor told us to stick with it and keep trying this, he needed the adjustments anyways for his neck because it was giving him very poor posture, so we continued, after the next couple of visits we saw a decrease in the tics, she wanted to adjust him twice a week, we have been going now twice a week for a couple of weeks and he has had a dramatic improvement, some days he doesnt have any eye rolling at all, other days it might be once twice, or up to five times day, so as of right now he has gone from eye rolling all the time, ten times in a minute to not even doing it ten times a day. Im so happy so far with the results we are seeing and i just cant believe i havent read that this may be possible anywhere. I wanted to share this story so that it might be able to help others who might not have thought to go to a chiropractor, the chiropractor herself said so many people dont know what we do. Im not saying this is a cure for anything but it's sure worth a try, i know seeing my son struggling with the tics the way i was i would have tried anything, and im so glad we tried this, i hope that i could help anyone else who might be going through some of these things and beg you to at least give it try because in our case it is working, and i plan to keep an update on here to let everyone know if it continues to work and anything else i can find out. I will attach the site of our chiropractor so you all can check her out and i would encourage you to call and talk to her and i pray that maybe there would be a way to help other children going through this a well. I would also like to know if anyone else has tried this, did it work? What are your thoughts on tics and chiropractics? I hope by writing this i will be able to help someone, please feel free to post any questions. Her name is dr. Creevy knox in illinois, please look her up, her buisness is called proper balance = )

 

[Jerseylicious]

http://www.disboards.com/member.php?u=367854Wow, I cannot believe it's been 6 years since I started this thread!!! I'm getting old!

I see above at one point I wondered what the future would hold. Well, here I am six year later, my daughter is 12, and she still has tics. Now she is classified with Chronic Tic Disorder. But, just like back then, they come and go, get better and get worse. We'll see what puberty brings!

Well, tamiruelas, I have been working for a chiropractor since 1992, so my daughter has seen my boss quite often. No change. But I'm very glad it is working for you! I think it's trial and error for SO many treatments, and at this rate, I cannot find a treatment that affects her in any way for the good. Her tics are not horrible so at least she can function in everyday life just fine. But with her hard blinking tic right now, it gives her a headache because of the muscles being used all around her eyes. So we just muddle through. Thank you for sharing your story, and I hope your son continues to show improvement!!!

 

[candydogbright]

So how are everyone's kids doing with their tics? (Jen and I have been comparing notes.) My daughter has a new tic, where she pulls her entire stomach in & out and moves her shoulders side to side. This is so hard to understand, since not much is really known about it. Just took her for another eval last week, & I was told to keep away from chocolate, caffeine, and artifical colors. I guess this will be going on for a few years at least. Oh well, could be worse I guess. But it still stinks.

Hi my name is Annie and I googled "tics in children"and got here and have been reading your posts I see they were in 2006 so I would like to know hoe your child is now? Have they gone away or gotten worse? I am where you were , I am worried sick, my daughter is 7 and has been doing mild tics for a short time and the last week more severe tics more often, we were watching a movies tonight and i laid her on me to rub her back and she just kept jolting her head and snapping her teeth together, a got teared up , i just hate this,im exhausted and off to bed but please give me a update so i can have hope or not!

 

[antkim]

Ironically I was researching "ticks" and came across this thread...however I have been a dis member for years!

So we just started experiencing the same thing. DS (almost 8) woke up last Sunday morning with all sorts of ticks!! Blinking of eyes, grimacing, opening mouth, shrugging shoulders, tilting head etc. So we started researching and although we are not positive ..it may be PANDAS. We took him to the dr and they put him on antibiotic (his throat was red although short strep test was negative)and 2 days later the ticks had calmed tremendously. Today, his first day of 2nd grade, he went to school almost "tick" free.

Let me back up a bit. DS got strep ALL the time and finally had to have his tonsils and adnoids out in June. Looking back on it he really did have some "ticks" that came with the strep. The eye blinking and chronic clearing of the throat however we chalked that up to swollen tonsils. I never mentioned it to the DR because I just thought he was irritated when he got strep.

He does show other signs of PANDAS like hyper when he has the virus, very senstive, afraid of going to bed, a little bed wetting (very minor) and senstive to tags on clothing.

We have an appt. with neurologist in 2 weeks. I am hoping and praying that they find nothing wrong...DR said it could be an isolated episode. However, if it does come back that he has something I hope PANDAS is as far as it goes. Of course this can be a VERY serious condition however most research shows that children out grow it.

It has been and will be INCREDIBLY hard watching him go through this. Of course he has no idea he is doing it but it just breaks my heart. He is just the cutest most loving little boy....honestly people comment and talk about him all the time.

I just want him to be OK and can't wait for his appt.

 

[TaraPA]

Hey Jerseylicious! I think we've talked on the other tic thread...I'm another Tic Mom! It's back-to-school time, and that ALWAYS brings out the tics in DS14. He was diagnoesd with tourettes by a neurologist, because his tics are motor AND verbal. His tic right now for about 2 weeks has been a "sniffling" sound - like his nose is stuffy & he's sniffing - but he's blowing OUT of his nose, not in. It's TERRIBLY annoying, as he can do it up to once every 30 seconds...but we know after dealing with tics for 8 years now, just to ignore it.

So to all you fellow Tic Parents out there - hang in there - back to school is a very stressful time for tic-ers!

 

[TaraPA]

Hey Jerseylicious - do you have a link to that other long thread - there was some really good info there as well, I thought it might help the newer Tic Parents on here!