Jump to content

Menu

Daughter Just Diagnosed with Tourette Syndrome


tagglelim
 Share

Recommended Posts

Our sweety 7-year-old daughter was just diagnosed with Tourettes ('s ?).  We are still in a bit of shock.

 

I'm wondering if anyone here has experience with this syndrome?  What we could/should expect?  At this point she is considered mild, though she does have 2 motor tics and up to 3 different vocal tics happening right now.  Their frequency isn't too invasive at this point.  And overall kind of cute....but maybe that is because I think my daughter is cute. 

 

I'm not sure what I'm asking for yet, just any advice from experience, I suppose.  Should I expect this to get worse?  The doctor said that 60% of cases remain relatively mild - has this been your experience?  How much does environment play a role?  We just moved to a tiny apartment and all of our neighbors smoke.  Our kids are enjoying playing outside with the neighbors, but there are some stressors like the smoke, dogs, having to not stomp on the floor and disturb the neighbor.  Or I'm wondering if the move itself was a stressor that has brought out more tics than usual.

 

Does diet play a role?  We've been reading that gluten can be a culprit - is this true?

 

Anyway, any thoughts?  We are still reeling a bit and just wonder....how bad is this going to be?

 

Thanks!

 

 

Link to comment
Share on other sites

I don't really have experience with TC, but my son has had tics in the past and still does on occasion. Out pediatric neurologist told us that 80% of children have some sort of tic during childhood and that most go away on its own. I thought that number sounded high, but my son's tics have all gone away without intervention.

Link to comment
Share on other sites

You might want to post over on the special needs board, you might get more responses there.  Hugs. I hated not having a diagnosis for my son for years.  I felt like I was swinging at a tiger in the dark, with a baseball bat.  I could hear the tiger, I could smell the tiger, I could feel it run past, but it was too dark to actually connect and know exactly what I was fighting.

 

Once we had a diagnosis we were shocked but relief came shortly afterwards.  We knew what we were up against and with knowledge came power.

Link to comment
Share on other sites

I think the technical difference between a tic and Tourette's is the vocal component. My ds had a mild case during kindergarten. It went away on its own. I think being stressed and being tired can make tics worse. We did not change his diet or anything. He does get more sleep now that we are homeschooling (he was in school at the time) and I think that has made the most difference. I have heard that magnesium can help - which many people are low on in general. Taking baths with Epsom salt helps some people (because it gives magnesium). I have heard that medication often does more harm than good.

 

 

Link to comment
Share on other sites

I found a regional support group - you should see if there is one in your state.  My son's tourettes is one of his more minor issues.  The meds he is on for his emotional issues also helps some with the tics, but he still has them (the 17 yo).  Some of the kids in our group only have tourettes and maybe some anxiety, but other than that are perfectly normal.  Others have more problems.  Some kids tics fade away, sometimes they surge in puberty.  I have not found any diet connection for my son, and I dont think most kids have a diet connection.  But its always worth trying.  The important things to remember are that they are not dangerous in any ways, and they cant control them.  I mean, as they get older they will learn some control, but not for long, and when they stop controlling its like all the tics will come out at once.  Support her - as she gets closer to middle school, kids will likely get meaner about it.  Proactively talking about it can sometimes help

Link to comment
Share on other sites

Thank you, everyone, and thank you for the hugs!  Yes, I think the vocal tic sets Tourette's apart and she has had a vocal tic for over a year now.  I will look into the things everyone has suggested and post over on the special needs board as well.  

 

Thanks for the tips on the meds.  She has been prescribed a med, but we are hesitant.  She is a growing girl and don't want anything to impede that......

 

 

Link to comment
Share on other sites

Hopefully I can help set your mind at ease... I was diagnosed with Tourette's over twenty years ago, and in the time since I have graduated with two college degrees, am happily married, had three children, and am a homeschooling mom. In short, I am a regular person with a mild neurological disease, that is occasionally embarrassing but not really a big deal in the grand scheme of life.
 

Sometimes I worry that the tic in my arms will wake up my sleeping babies, but so far no one has complained. :)

 

Feel free to PM me if you have any questions, or ask them here. I'm also over on the SN board, because my daughter has cerebral palsy.

Link to comment
Share on other sites

:grouphug:  Hearing an official dx. here has always been hard for me, even when I knew it was coming. :grouphug:

 

My son doesn't have Tourette Syndrome diagnosed. However, he has had motor and verbal tics. We started N-Aceytl Cysteine for OCD, and those tics have gone away (nearly/are a rare appearance now). So I googled and, sure enough, Yale conducted a phase 2 clinical try with NAC for pediatric Tourette Syndrome. The study here (no results updated here/looks like it completed in July...so I don't know what that means!) gives doses. This is a really safe supplement, has been studied with kids, and has been used in pediatric populations for a long time. http://clinicaltrials.gov/show/nct01172288

 

We tried NAC for my son before moving on to medication options with side effects. He actually takes twice the dose used in that study. It has been a great success for his OCD. I suspect, of course, that the underyling things are different for different people. But it might be worth looking to see if it has proven effective for some and might be worth a try.

Link to comment
Share on other sites

I really don't know anything but wanted to say that a friend's son was diagnosed when he was about 10.  It was very mild, something in the way he cleared his throat. I only remember because she mentioned it and asked me not to comment to him about it because he was newly diagnosed and they were still getting used to it.  I didn't really notice it anyway.  We don't see them regularly anymore, but I believe he "grew out of" it. She's never really mentioned it since, and we do keep up casually.

 

:grouphug: :grouphug: 

 

I think it's much more common than you'd think, with the vast majority nothing like what is depicted on tv.

Link to comment
Share on other sites

I do not have a formal diagnosis, but I'm nearly positive that I have Tourette's. I'm 33 and I remember having tics all of my life. As she matures, she will become quite good at hiding them in situations where she wants them hidden. Most people do not know I have any tics. Sometimes even my husband doesn't!

 

My major problem with tics is that they can become very uncomfortable. If you wrinkle your forehead enough times, you may end up with a headache. That happens to me sometimes. My tics seem to cycle. One will last for a while, go away, and a new one will appear.

 

Stress does make them worse.

 

I've never tried any sort of diet changes for it, nor medication . I'd only consider medication if it were significantly effecting my life. I'm not a fan of being on meds.

 

But like another poster mentioned.... I'm married, three kids, homeschoolers, likes to have fun. No, it's not ideal, but it's not the end of the world.

 

The media likes to be sensational, so of course they will only run stories on the ones who curse out loud uncontrollably, etc. That's very rare.

Link to comment
Share on other sites

My oldest was 7 when diagnosed with TS. I originally took him to an eye dr at around 3 for a weird eye scrunching thing. It was when he started ps in 2nd grade and got in trouble for "whistling" (actually a soft hoot, his vocal tic at the time) we got a diagnosis. The Meds for TS have many side effects, meaning most kids with mild to moderate tics don't need them. Puberty can exacerbate symptoms, but it can also be the time it fades away- and it was for ds.It's been a year or so since he has had a vocal tic, now at 15. He would calmly tell anyone who asked "why are you doing that?" about his tics, and other than the one incident in 2nd grade, pre diagnosis, never had any trouble relating to the TS. Even when his tic was barking, lol.

 

The television TS person is only a very small fraction of what TS usually looks like.

 

Diet made no difference for DS, he had some bad sinus issues we tried different diets for but it never helped the TS or the sinuses- surgery did though! One thing to be aware of is that TS is frequently found with other neurological issues, it was in DS case.

 

Truly, it's been a non issue for him. Not scary!

Link to comment
Share on other sites

I do not have a formal diagnosis, but I'm nearly positive that I have Tourette's. I'm 33 and I remember having tics all of my life. As she matures, she will become quite good at hiding them in situations where she wants them hidden. Most people do not know I have any tics. Sometimes even my husband doesn't!

 

My major problem with tics is that they can become very uncomfortable. If you wrinkle your forehead enough times, you may end up with a headache. That happens to me sometimes. My tics seem to cycle. One will last for a while, go away, and a new one will appear.

 

Stress does make them worse.

 

I've never tried any sort of diet changes for it, nor medication . I'd only consider medication if it were significantly effecting my life. I'm not a fan of being on meds.

 

But like another poster mentioned.... I'm married, three kids, homeschoolers, likes to have fun. No, it's not ideal, but it's not the end of the world.

 

The media likes to be sensational, so of course they will only run stories on the ones who curse out loud uncontrollably, etc. That's very rare.

I definitely agree about tics causing muscle soreness, etc. And my biggest flareups as an adult have been during pregnancy, probably from stress or hormones.

 

I explain having tics with the analogy that you can hold your breath, but you can't voluntarily stop breathing. I am a very part time professional orchestral musician, and if I have a solo coming up, I will have a bunch of tics, get in the zone for the solo and they will go away, and then a bunch when it is over. My TS actually helped me find my passion and career path, because when I played music my tics would calm down. I read a story once about an actor with TS who had a similar experience.

 

But I understand just how hard it is to hear a diagnosis, even if it is a relief. As a parent, I struggle with my daughter's CP diagnosis more than she does, for sure.

Link to comment
Share on other sites

I have quite a bit of experience with TS. Pm me if you want.

 

I think that diet and nutritional deficiencies are always the place to start. There is a lot of info out there. I have 1 sibling that is greatly improved when he doesn't have preservatives and dyes.

 

Recognize that certain situations may increase/decrease tics. Teach your child coping mechanisms for stress and anxiety.

 

Locate a support group. I had a great one growing up and still have fond memories of the people I met.

Link to comment
Share on other sites

I have some experience with this. It's not the end of the world. In many/most cases, it is really just an inconvenient/uncomfortable and transient quirk. If it isn't a problem to your kid, it is not a problem. Keep that in mind as you find coping mechanisms or consider meds. I would NOT consider meds unless the tics are actually causing a problem for your child that is significant and that you cannot alleviate in some safer way. You can PM me if you want some reassurance, etc. 

Link to comment
Share on other sites

I'm having to type this on an iPod, so please excuse any typos.

 

Can I just say thank you? Your comments and shared personal experiences have been so, so, so encouraging. My husband and I sat dumb and mute in the dr. office, in a state of shock, and didn't ask enough questions. We turn our research to the web and, lo and behold, some TERRIFYING videos come up. 20/20 documentary worthy stuff. Scary. But hearing from you that life can be full and productive is just so encouraging.

 

We think we are going to stay away from the meds for now. Hubby was a neuroscientist in a different life and is wary of what they can do to a developing brain. And I like what someone said up above.....if they aren't a problem to my daughter, they shouldn't be a problem to me....that's a loose paraphrase anyway...right now the tics don't bug her.

 

But, sigh, she HAS been teased in ballet class. A verbal "ha!" in the middle of a quiet ballet moment has brought her unwanted attention. How should we handle situations like that?

 

So what things impact frequency? I see stress and sleep are biggies. What else? It seems like there are mixed messages on food....And I should look into the supplements...

 

Has anyone used behavioral therapy?

 

And the mention of genetics made me smile. DH had a tic that sometimes makes its appearance. the neurologist actually caught him doing it and DH wasn't even aware it had happened. :)

 

Anyway, I'm rambling, I know. But thank you...these positive comments have really helped and I might take up the offers to PM.

Link to comment
Share on other sites

I am also typing slowly on a tablet...

 

TS is very much a genetically inherited condition. Off the top of my head, I think one parent with TS has a 1 in 4 chance of having a child with it and two parents have a 3 in 4 chance.

 

And more later, three hungry children just woke up!

Link to comment
Share on other sites

Hugs!

Def try changing her diet to see if that helps. A good friend's son has had great success with gf diet. His verbal tics are so infrequent they are not really noticeable to anyone other than immediate family now. She also found that she had to change laundry cleaners and a few other food items. Turns out that he is slightly allergic to those things and that when he has an allergic reaction his tics increase.

 

Obviously I'm not a Tourette's expert but I do have a lot of experience changing my kid's diet for behavior and cognitive issues. I don't know if you've ever had to but there is tons of info out there and it can be really overwhelming. Some people will recommend you start on a strict diet where you have eliminated most known allergens. Then you slowly add one food at a time to see if there are any reactions. I tried that and it was soooo hard. My son was miserable and would cheat whenever he could. We decided to totally switch tactics and just eliminate one food item at a time to see if that helped. First we eliminated gluten for two months, then dairy, etc. That was so much easier. Plus since there are gf and cf substitutes, he didn't feel cheated and was much more willing to stay on the diet.

 

 

I'm sorry she is getting teased in class. Do you know the moms well? You could tell them and ask them to explain to their kids that your daughter isn't making the noise to be silly. The noise is more like a hiccup that she can't control. They may be teasing because they think she is trying to get attention. I understand that sharing her diagnosis could be hard for you so my advice could be bad.

Link to comment
Share on other sites

How to handle teasing--that depends on the kid. My ideal way would be to encourage confidence and acceptance in her. If she can learn to make TS a part of her, others won't make fun of her. Once I was sitting in a college class lecture and a boy made some kind of verbal tic. The whole class looked at him and he said "oops, there's that Tourette's acting out", in a real light joking way. I don't think the tics were even noticed after that. So I think that attitude is something encourage in the long run.

In the meantime, speak with the parents and teacher if needed. But I'd really stay away from making it something negative or apologetic. Just say "hey DD has TS. It'd no big deal, but here's what it looks like/presents as just so you're aware." Don't apologize that it might interrupt class or anything.

Link to comment
Share on other sites

I'm sorry she is getting teased in class. Do you know the moms well? You could tell them and ask them to explain to their kids that your daughter isn't making the noise to be silly. The noise is more like a hiccup that she can't control. They may be teasing because they think she is trying to get attention. I understand that sharing her diagnosis could be hard for you so my advice could be bad.

 

:iagree:   I wouldn't explain any diagnosis, I would just say that the noise is like a hiccup that she can't control and leave it at that. 

 

In 12 years of hsing, it's been our experience that the homeschooling community has a lot more acceptance for quirkiness.  I hope you find that to be just one more benefit of having your child at home.  It can be very scary to hear something out of the "norm," but I would try to keep perspective.  Thirty years ago, this likely would have been undiagnosed, and it just would have been an odd thing your dd did.  She would adapt as best she could, as would others around here. You have a bit more knowledge now, with the possible ability to smooth the way.

 

:grouphug:

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...