suzsinging

We just returned from vacation and I have been reading these posts with amazing interest! My son's tics started around age 7 or 8 with throat clearing and sniffing right around the time he was losing teeth and new teeth were coming in with an obvious overbite. We were advised to do orthodontics around age 13 because of jaw misalignment and that is when his tics went crazy. We went with a dr. who suggested a "herbst" appliance to pull his lower jaw forward to avoid pulling teeth. At the time we blamed the braces for his tics but thought they would go away when the braces came off. That's when the other motor tics started. Last year, at 15, our dentist said he needed a bite splint because he was grinding his teeth so badly and I explained about his tourettes. Our dentist even said that any misalignment of the jaw can cause tics. The bite splint has stopped the teeth grinding so i am very curious about Dr. Sims' appliance but worry too that it could cause more tics. All i know is that when i mentioned it to my husband and son they were ready to head to Maryland. Eager to hear from those who have made appts. I may call for more info myself. thanks to all who post here!! dietary changes have made a difference in my son (along with supplements) But most of all, the support and understading is invaluable! God Bless!

I couldn't help but want to comment on everyone's reaction to the 20/20 show- I think I had seen parts of it before. I am alwys hesitant to watch anything on ts because I know they are going to show the worst cases and not much hope for treatment. I never have my son watch them as it would create terrible anxiety for him, I'm sure. I too am thankful that we have not had to deal with terrible cursing and feel like my son yells "Amen" because it is an acceptable word. I, too, struggle though with knowing how much to help/allow. I think I've probably not been tough enough about homework/ studying in high school because I know he needs to destress and tic after a long school day of holding it in and sometimes I feel like my husband is too hard on him with his tics. The only times I get hysterical are when he is injuring himself or I feel like he might break something. He went through several early teen years picking on his younger sisters until I nearly lost it. So, I do think there are times when we have to demand certain behaviors no matter how difficult. In our case, age has definitely helped as far as being able to discuss the tics and what's going on emotionally. I wish we could see more shows about ts that show cases not so severe and options for treatment. We are already seeing some results from a cleaner diet and supplements after a month. I typed a paper for my son the other night because he is really bothered by computer screens- however, it was only this year (at 16) that he was able to tell me that. I think he made a C or D in a computer class and I assumed it was laziness but I'm now understanding that he just does what he has to do to avoid ticcing sometimes and in that case he was probably avoiding the screen as much as possible. It's really amazing to me when I think of all the coping skills he's probably developed over the years. I pray every day that he is being prepared for a successful future. It's just hard to watch your child struggle in any way!

No , I haven't noticed a difference since then - he started on taurine about 2 weeks ago and the L-carnitine about 5 days ago. I think the vocal has been bad for about a month or so (before we even started supps) Maybe I need to keep a journal to keep up with any changes. So far I've just noticed a significant decrease in anxiety (which bothered me the most) and much fewer large body tics.

The vocal has been worse for several weeks especially since he has started yelling it 3 times each time- it's the worst late at night when he's tired. I think he goes through some kind of "routine" right before bed as we hear lots of noises coming from his room (door closing, light touching, yelling, etc) I figure he releases a lot of built up tics then. His tics probably started around 7 or 8 with throat clearing/ sniffing and progressed over the years with full body tics, mumblings/noises and his one big vocal- yelling "Amen"

thanks cherie! this really helps since i've been unsure of dosage amounts. I had read about the large amount of inositol for ocd but just went with the recommendation on the bottle and have him taking 100mg/day. Think I'll bump that up some and give the L-carnitine more time to work. Of course I always want to see quick results and really did with the anxiety issue but I know we need to be more patient and keep loving him through it. Your advice really helps about the 504- we will definitely do that as I think he's finally able to recognize and tell us what helps with the tics. When I registered him for the SAT I discovered that he could have special accomodations for testing (fortunately it was written instead of on the computer). But I do want him to know it's ok to ask for help if he needs it. thanks again for the encouragement! I really feel like we're on the right track- just have to remind my husband there is no medication specifically for ts and would rather try natural treatments as long as we can.

I haven't posted on here in a few weeks because Ive been busy cleaning up our diet (no artificial colors, preservatives, etc) and gradually adding supplements one at a time. Overall I feel like my son is calmer, having fewer body tics and definitely less anxiety (the inositol, I assume). However his vocal tic is worse along with the compulsion to "touch" things- ie..light bulbs, door handles and he seems to be doing everything in 3s- even the vocal. OCD? Or is this just part of ts? I feel like we're on the right track but these are the tics that drive my husband crazy and he wants us to "do something". The closest "natural" dr. is probably 2 hrs away. Not sure what to do next or if the supplements need more time- just started L-carnitine last week for vocals but wonder if ocd is the main thing to treat. He left the house this morning very concerned about a history exam that he had to take on the computer- worried he will turn the computer off or something and the vocal will be harder to control looking at a computer screen. My husband mentioned a 504 for him next year (my husband is an elementary principal) I think we've tried not to make my son feel like ts is that big of a problem but wonder if we haven't helped him enough in school- any thoughts? The one time I did talk to a guidance counselor about a schedule change, the school was wonderful about it. At 16 it's hard to know the best psychological route to take. Right now he's taking magnesium, a multivitamin, inositol, L-carnitine, taurine, and B-complex.

Thanks to both of you! I feel like we're on the right track but it's going to take some time to really "clean up" our eating habits. At 16 I can't monitor or fix everything my son eats but if he can start to see a difference I know he'll be willing to try a little harder (he's already seen the caffeine connection). He eats lunch at school because he doesn't want sandwiches from home and unfortunately, in SC, school lunches resemble a fast food menu Hopefully the summer will give us a chance to try some things without the stress of school. I have a feeling you are right about the diet- we are probably still seeing the results of the last few months of poor eating and it will take time to detox. thanks again for your help- this forum has been so encouraging!

thanks! I have him taking a B complex vitamin- is that a mistake? should i be buying individual B vitamins? I feel like the inositol is really making a difference in his overall mood/ anxiety level but the tics are still pretty strong- especially his vocal one (he's actually yelling it at home). I had him on a multivitamin until a few days ago when I realized the pills were blue and that was a big no-no. So I will have to buy some more- I'm just now realizing how many things have added colorings and wonder if that's been one of his problems. I think the magnesium is probably helping with overall relaxation but I'm confused about the vocal tic. Any thoughts?

My son had a herbst(sp?) appliance put in his mouth to correct an overbite and then 1 1/2 years of braces. His head, neck, mouth tics went crazy!! Then after he had them removed he started grinding his teeth so badly the dentist had to make him a bite splint to wear at night. I explained the situation to the dentist (that he was actually grinding during the day, not in his sleep) and he explained that even the slightest misalignment could be causing the tics. The bite splint has definitely helped and I rarely see him grinding anymore. The post from someone about metal utensils was a real eye opener because my son was biting his fork at every meal. When I asked him about it he said he would rather use plastic utensils and plastic cups. Who knew??

It's great to hear from someone with a son about the same age. First of all, yes, I defifnitely think my son is a late bloomer!! He is 16 and in the 11th grade. He has a late August birthday and in hindsight we realize he would have benefited from a later school start but he has never been a behavior problem and was doing so well in kindergarten academically that we didn't consider it. It really showed up in middle school that he was young and of course that's when the tics really got going. Having a 14 year old daughter, I sometimes feel like my son is just now really maturing so maybe the biological things going on have had a big impact on his tics as well. We have never done any allergy testing and though I try to serve well-balanced meals, my kids have certainly had their share of junk food. At 16, my son eats out a lot with friends. During baseball season, the team ate at McDonalds after every away game!!! I know that that coupled with lack of sleep, stress, etc. does not help his tics! I'm just not sure where to start with his diet!! Z has been driving for over a year now and is actually a very cautious driver, I think, because of his tics/ocd thinking but it still makes me nervous at times! We haven't really shared his condition with many people- only a few teachers as we felt needed- I sometimes wonder if that was the best way to handle it or if maybe it would help him to let people know??? He definitely has had good years and bad- last summer was great (but then again- no stress) and then he was doing alright this year until baseball season started and he had some trouble pitching and it was downhill from there. The high school season ended last week so I'm eager to see if the tics get any better without that pressure. I keep hoping with age the tics will decrease and his management of anxiety will get better- I already think he turns a lot of tics into funny sayings, etc so that others don't know it's a tic. For example, whenever his 10 month old sister comes into the room he yells "Little Thing" which she thinks is hillarious and outsiders think is adorable- we know it's a tic! Have you got any suggestions about diet or anything that has worked for your son?

thanks for the encouragement! You're right, we did appreciate that our doctors didn't make it a big deal as, overall, we know we have a great son and tics are just a part of who he is. We have 5 younger daughters who never call attention to it and love him no matter what he does! His tics probably started around age 7 or 8 with sniffing and throat clearing which we attributed to seasonal allergies and had him on claritin and flonase for a short while. When he got braces at age 12 he started doing a lot of head, neck tics which we attributed to the appliances in his mouth. It gradually went to foot stomping, dragging, touching things and then to his one big vocal tic which consists of hitting his head and shouting "Amen"- we realize we have a lot to be thankful for and can all laugh over that one -God is gracious! He does a lot of humming, mumbling, etc, and there is kind of a pattern to the tics he does (maybe ocd in a way- like he has to get them just right before he can quit). He was only on the topamax for about 6 months- we increased from 25mg to 50 (he's 6'2, 165 lbs) and the hand/foot tingling was bothering him despite drinking a lot of water plus he lost weight which you can see he did not need to do. I was always hesitant about medication anyway after reading Sheila Rogers' book and tried discussing allergies, supplements with the neurologist but got NO support. I can honestly say that tourettes does not control our lives and am thankful that my son can control his tics when he needs to- I think it's easier at his age- I can't say that it's gotten worse- probably typical waxing and waning - however, it seems to be bothering him more now probably for social reasons (dating??) I think he's learned some of the triggers on his own (he won't go to movies, avoids caffeine, goes to bed if the ticcing gets too bad,etc.) I just keep thinking there must be something that can help even if it doesn't remove the tics altogether. Luckily my husband now really understands that it is not something he can fully control and we can all talk about it a little easier. But then again we have to be careful not to talk about it too much or that will make it worse.

I am new to this forum but have been reading on here for about a month. I have gained a lot of knowledge but also feel very overwhelmed. My 16 year old son was unofficially diagnosed with tourettes about a year ago (I say "unofficially" because we saw our pediatrician and a pediatric neurologist who both talked about everything I had researched about tourettes without ever saying the word- very strange). My son was on topamax for about 6 months with very little change other than annoying side effects. We were advised to come off of it last summer and see what happened and my son decided it didn't make much difference. He is able to control his tics very well at school and in public- most people don't know he has it- his baseball coach just thought he was a "quirky left-handed pitcher" until my husband talked to him about it. This year he has dealt a lot with anxiety/ocd type thoughts which only aggravate the tics. After reading and talking to a few of you, I started him on some supplements (magnesium, B complex, and inositol) about 2-3 weeks ago. The anxiety seems to have lessened but the tics are really bothering him (when he complains, it's bad) and I'm not sure what to do. He is really trying to do whatever I tell him (no caffeine, artificial colors, play station, better foods, whatever pills I hand him) but he has expressed real frustration lately. I know he is under a lot of pressures at his age- he took the SAT on Saturday and ticced like crazy that night after taking a 5 hour test. I know the tics are affecting his decisions about dating, college, etc. He is a great kid but I don't think he can even express how difficult this can be at times. I've gained great advice on here and it has opened up conversation with my son (for example someone mentioned their son's problem with braces- that's when my son's tics first really flared up- and I noticed him biting on his utensils- so I asked him if he'd rather have plastic forks and he said "YES". Just something little that I didn't realize could help. I didn't realize that all of his biting/chewing things was connected to the tourettes. He had to start wearing a bite splint at night because of his teeth grinding and that has improved also. Ok I realize I'm rambling now. There's so much I need to learn and am hoping some of you can help. How long should it take to see a difference if a supplement is working? I would love for him to be under a doctor's care but really don't know where to go. Any suggestions?