mommyfor4

Hi all. Feeling a bit cautious about maybe starting ds9 on L-Carnitine. He is mainly Chronic vocal tics and has done well on the Natural Calm (thank you everyone who suggested this) but he still really has times when they are really bothersome for him (putting it mildly). I tend to be cautious about supplements with him as he seems to do better with diet than supps. My question is, is this one were the pros outweigh the cons generally. And if so L-Carnitine vs Acetyl L-Carnitine? I know as an amino it has its drawbacks so I really would love some first hand info. before adding it. Any and all info would be greatly appreciated. Thanks, Megan

Hi mom2ck, we found an amazing natural cough and allergy syrup. It's base is honey extract and is child safe. The flavour is a bit strong but my ds takes it because he's seen it works. Some of his tics resemble post nasal drip symptoms or maybe that's just what they are and have been bulked into his vocal tics...anyhow this stuff really works for him, it's called Nin Jiom Cough Syrup here's there website if you want the full ingredient list but it is all naturally sourced. www.njherbal.com It says it's for productive cough but works for sniffing, sinus stuff, you name it. He finds it helps for dust and mold school allergies as well! Good luck. Megan

Hi Chris, You probably already know this but just in case. If your son has no nut allergies, almond milk is also a good substitute and my kids really like it, it's also great to bake with. If nuts are an issue or for school brown rice milk or hemp milk will do although my ds is not crazy about them especially the hemp which can be a strange texture. Thanks for the link will read up. I am struggling with adding any supplements to his diet, sometimes I think he does best just left alone. I am going to reread Chemar's link re: teas , royal jelly etc. Just feels right for us, at least today So far Natural Calm and Omega 3, Vitamin D and natural form acidophilus are my only "for sure non-offenders". Hate always second guessing, hate always messing with his system, I know it's necessary but sometimes I feel like I'm treating him like a science experiment! Sorry to vent, the start of school just upsets the whole balance I guess so thus the frustration. Have you had any luck with non-dairy kefir. Our ds has a milk intolerance but does seem to handle a good quality organic yogurt, I guess for him it's the lesser of the two evils. But if you come across a good one please update! Thanks again. Megan

Hi mythree, I too agree with the epsom salts and a good chiro or massage if she can tolerate it. My son, although most of his tics are vocal, also has pain in and around neck and back from forceful tics and is wary of having his neck adjusted so our Chiro massages and works around his worst areas until (fingers crossed) he is ready to allow him to adjust his neck. If all else fails there is a dye free liquid Motrin or Advil available although I still use infrequently as the sugars, flavour can be a problem. We also use a rice sack warmed with a drop of lavendar (want to also try Jasmine). He wears it when relaxing or going to bed if his neck is particularly sore. If you dont have one you can make a temporary one from a long sock. Hope she finds some relief, it's horrible to watch the effects of their tics, I watch my ds and think "he must constantly be in discomfort if not alot of pain!" We also massage his neck with Casor Oil, great anti-inflammatory properties and boosts the lymphatic flow. Best wishes. Megan

Hi Cj60 and Chemar, still getting used to all the useful supplements could you explain Inositol for me, what is it and what does it do? Cj60, I can't remember if you were giving your ds the Kids Calm or not, so far our ds has told us he feels it has been beneficial, he feels he is focusing easier and his tics are not as noticeable at school. Thankfully this year he is not in a portable, that was really hard on his tics. I do notice a slight increase immediately after he takes it in the a.m. but seems to calm within a half hour or so, has anyone else experienced this? I have had to pull way back on fruit also he seems to be super reactive right now to fruit sugars, any ideas? Sorry to hijack your post Cj60! Megan

Hi AHB900, my own personal opinion from watching and talking with my husband and son who both have tics is that mood definately plays a role. Both of them find that stress is a huge trigger. I have seen it first hand in both of them. In fact the tics will often be a telltale sign for me even when I'm unaware of their stress. Both have also told me that aware or unaware after holding back tics for example in school once home and relaxed they will have a "burst" of tics almost releasing the tension from holding in all day (as best they can). Excitement, noise and lights can be triggers as well especially if you find you are sensitive to noise, sounds or smells. It seems it can swing both ways excitement or the safety of being able to tic without concern. If my son is engaged in something he enjoys his tics often wane but if bored or tired they increase. Anxiety is such a physical thing I am not surprised they would cause more tics. As far as TV it could be the type of TV our son does fine with LCD but older TV's are an issue, even the new energy efficient bulbs if exposed and not filtered irritate his tics. Hard to ever really know! My ds does well with massage and deep breathing for anxiety but sometimes he just need to let himself release with tics and home or alone in a car is a pretty safe place! Good luck hope this helps some. Megan

Hi I read your other post but am not familiar with Dimethylglycine. Glad to hear this appt. went better than your prior! I wanted to add that you might remember my posting about acidophilus and an increase in my ds tics, after Chemar's advice I went back to yogurt and kefir and saw almost an immediate decrease. Plus it's cheaper!!!! We have since had other major increases but that's another issue. Good luck!

[quote name='mythree' I think from our experience, starting with artificials and preservatives can only be a positive. Our ds gets wired from colours etc. The sugars seem secondary although still a good idea to avoid corn syrup, fructose/glucose etc. We stick with raw cane sugar or stevia, maple syrup, honey as much as possible. 100% fruit juices with no added sugars are a great start, I just water them down. As far as what to avoid for us big ones were tartrazine (yellow food dye), red dyes, MSG, actually make it easy on yourself if its not natural avoid it! This for us was a great jumping off point. It gets you really reading labels and getting back to the simpler the better. Next we eliminated wheat and most gluten, he still has higher quality oatmeal but we watch how much. It you dont think wheat is an issue sprouted grains are a better choice than refined wheat. The nice thing is most gluten free products are also free of artificial colours, flavours and preservatives so you get the most bang for your buck. It is scary to start but with time it does become easier and you dont need to always second guess your choices. Our whole families food choices have changed even my younger kids who dont yet show any signs of tics. The trick is to still keep things that feel like treats on hand. There are some great Rice IceCreams or Soy if it's not a problem ( I personally avoid too much Soy as it can have it's own issues). There are gluten free icecream cones! Your grocery bill may be shocking for a while but again as time goes on you adapt. I would say milk and wheat are two major players worth eliminating for a time. Also be aware that sometimes when you remove the offending food tics may worsen for a while before they get better so give it some time, at least a few weeks if not 4-6 weeks. My ds seemed to need about a week for his body to cleanse itself from coming off wheat, it really caught me off guard at first. I do have him on Omega 3, just stopped supplement acidophilus in favour of yogurt or kefir thanks to others advice as his tics seemed to increase drastically with the powder. He takes Vitamin D, just started Natural calm magnesium (will keep you posted) and should get him back on a good multi, his had corn syrup solids (didnt realize) and was making him antsy and tics increased. I am still finding my away around what supplements are best for him, it's trial and error and we have not done any testing that requires needles, (one of his extreme anxieties). I know this feels huge but trust me even if you only find one or two triggers it is worth it and in the process you are taking back some of the power. This "thing" just takes over the whole family if you let it, we have been 3 years now, and the best move we made was to start paying close attention to what our whole family was consuming, breathing etc. At least it gives you something to do, cause not doing drove me crazy! I wish you all the best and much patience and strength for the weeks, years ahead.. Megan

Hi mythree. I definately agree about Sheila Rogers book, it is now my encyclopedia of info. and I regularly come back to it in stressful times. An elimination diet although completely overwhelming at times has been a huge step forward in our fight to decrease our ds9 chronic vocal tics. We started by removing all artificial colours, flavours, preservatives. Hope you enjoy baking because that will make your life so much easier Our son showed great progress once we removed pretty much anything chemically modified etc. We then began by removing the main culprits wheat and dairy. There are some great substitutes now it is just a matter of learning how to work with them. It is a big job but the pay out can be quite impowering! I found doing a total elimination too much immediately for our ds, so we worked our way into it. Detailed food notes help initially and trust your gut, if you think something could be a trigger as healthy as it may seem, you could still be right! Good luck and if you need help tweaking recipes etc. dont hesitate to ask! Oh and a quick side note remember it is not always food, we found going to natural cleaners and household products even soap, laundry and dishwasher detergents and shampoo seemed to eliminate his severity. Artificial and chemical anything seem to be hard on his system. Best of luck! Megan

Hi Bonnie and everyone else. What a relief to talk about this! Dealing with vocal tics can be physically and mentally exhausting for them as well as us! This last week at the cottage our ds9 had a brutal time with his vocal tics to the point of me sitting outside on the porch crying on my mom's shoulder. It is heart breaking and sometimes I feel almost tense to the point of anger. (not at him but just the whole situation). It is especially difficult driving 2 1/2 hrs home with four kids two of which are ticcing! I find deep breathing, music etc, somewhat help but there are times I too wish for ear plugs! What pulls me out is remembering that it's his poor body handling the full impact of his tics I just have to listen...sometimes a little loving comedy helps too. I sometimes try to pretend that they are making their own music... I think for me it is the constant question of what is triggering them now? So frustrating and heartbreaking. So much work and yet I still know there are a billion unknowns! But the sense of relief when you can find even one trigger (this week I'm pretty sure it was the fruit smoothies we were having every morning, now just need to try to pinpoint what fruit was the culprit or just too much fruit sugars?) gives renewed energy and a drive to keep on pushing on. Humour and a whole lot of empathy and people to talk to seem to be the best medicine. Cheers to all the parents who perservere even with their own sanity on the line !!!!! Megan

Thanks jstone! always happy for any additional info. will definitely look into this. Thanks everyone for so much support.

Thanks everyone for your experiences, I have stopped the probiotic supplement and gone back to organic yogurt and will start making kefir again. I also bought the Natural Calm, he didnt seem to mind it, think I'll just add it to his morning fruit smoothies. We are heading to the cottage for a few days so we'll see how things develop, will keep you all posted. Have a great weekend everybody! Megan

Good luck Monday! and would love to hear what you turn up as well...Thank God for people who share their experience because sometimes even the best intentioned Dr.'s just cant know it all. Megan

Thanks for the insite. The only reason I started with the supplement was we were going dairy free, is yogurt not a problem? I was using organic plain yogurt and he loves it, was sad to give it up, so going back would be a big bonus for him. Thanks again Megan

Major indecision here. Started back on Acidophilus 1/4 tsp 2x/day about a week and a half ago. Since then ds tics vocal tics out of control and come to think of it that is also when dd's tics really started. So if it's die off how long to wait it out. I'm nervous to discontinue in case that's the situation but if it's not I dont want to make it worse, you know? Anyone else had this experience, any input would be greatly appreciated, nothing else has really changed in diet etc. Only it has been really hot and humid here lately. Soooooooooo frustrated. They are on high grade acidophilus straight from Naturopathic Dr. Will start Kids calm soon, thanks for input on that matter. Help......Megan

Hi Lynn, thanks for your earlier welcome! I can't speak for myself but I will on behalf of my husband who had tics and mild ocd as a child. No one thought to even consider in his family that he couldn't control his noises etc. I find this unbelievable as my sons tics apparently are very similar to what my husband went through. To this day his mother will not admit that he had tics, or could have had food sensitivities or other causes for "his habits".Yet she has come around slowly as far as our son. So my husband is turning 40 next week and still has some tics, very hard to notice unless you know him but still there under stress or if he drinks beer(probably the gluten). He himself did not have a name for what he did until our son began REALLY ticcing, in fact he never even told me of his experiences until then. We had been married for 7 or so years then. He says he knew something was not right but no one listened, especially with the school system He was put in a special ed class although he is extremely intelligent and always thought he was just dumb. Once he realized that his son had developed tics he was devastated at first blaming himself, but soon jumped in full force supporting whatever I came across to try. He explains even now that his tics are extremely frustrating and tiring. His heart breaks when our son has a particularly bad phase, I guess you could say he is hyper aware of them. Now as I said in my post our daughter has begun recently, scary for both of us, but I have to say it is nice to be able to ask him of his experience so I can really understand how they feel in those moments. My son is also really self aware and will talk about his tics, happy to have a name for them. I am also quite sure that my father to a lesser extend has tics himself, mostly stress induced but obvious none the less. My nephew also went through phases of extreme ticcing, but his parents will not even consider "that word", and have no interest in discussing it. So as far as I can see there a definite genetic links, but my husband is shocked by how similar our son's are to what his used to be. His started to become more controlled in his teens and my adulthood as I said you'd really have to be paying attention and know what you were looking for to even guess. This gives us some hope that our kids maybe will also have a waning after their early teens. Fingers crossed! Take care Megan

[quote name='Chemar' date='11 Thanks for your advice. I have seen Magnesium come up time and time again but wanted to find out more about it. I will definately look over your info. It's so overwhelming sometimes. We have started regularly on Acidophilus and his tics have increased (maybe die off?) Will continue hoping it balances out again. Do you know anything about L-Carnatine? It's another thing on my list to research. Thanks again.

Hi everyone. Have been appreciating your relationships and advice from the outside for a couple years now but never really had the nerve to join in. I finally realized that I need more support, particularly from people who are living this like we are... so here I finally am. Very quick intro. Married with four amazing kids. Lots of loving supportive family but no one who lives this. Our oldest,, 9 yr old boy has had obvious tics since about 6 yrs. but was always sensitive and tactile. Prone to anxiety over the strangest things, tough as nails with others. Been constantly researching and adapting with food changes, eliminating artificials in food, cleaning products etc. and supplementing with Acidophulus, Vitamin D, Omega 3. Recently our 7 year old daughter is showing tics, trying not to assume too much or panic but can't imagine how to track two kids triggers when one constantly keeps me guessing. Trying not to feel resentful but keeps creeping in. She is so sweet and articulate I feel guilty at my frustration. So...to the point. I'm hoping you all could give me maybe your top five or so suggestions as far as additional supplements or treatments. We are doing well with eliminating wheat, dairy, soy, and preservatives, no artificials a s I said above but I feel like I'm still missing something. Just a gut feeling, what is it his (and now maybe her) body"s not getting? Would love any form of advice. It's expensive to trial and error all these things, so selfishly I am hoping you can help me sift through all the stuff out there for ones that you have seen results with. Thanks so much, I look forward to getting to know you all a little better.

[quote name='Cj60' date='10 August 2010 - 02:51 PM' timestamp='1281469917' post= I'm new to the forum but have read on it for some time. I also have a son (9) with similar issues. He has never properly been diagnosed but we are quite confident we are dealing with chronic vocal tic disorder at the very least TS possibly. He was always sensitive to certain noises and textures, very tactile but nothing we were concerned with. Around the age of 6, we realized that his "habits" were increasing and it was impossible to pretend that the noises he was making were him just being a boy. At this time I came across this site and others alike and had my aha moment, I finally knew what this was. Very scary but also explained for my husband his own childhood "habits". I began exhaustively looking for a "cure" as I'm sure we all have, and realized although this wasn't a sure fix there were things we could proactively do. This also gave us a way to explain to our son that we finally understood and although we probably wouldn't cure this, there was hope in alleviating symptoms. ( I had recently heard my son begging that God would make this all go away) At this time his tics consisted of coughing, throat clearing , sniffing and others. The coughing in particular was driving him crazy! His grades were dropping and other people were asking him constantly if he had a bad cold, or allergies etc. So to cut to the chase, we began an elimination diet and have had good results removing wheat, milk,soy artificials of any kind, preservatives etc. WE also have have a daily regiment of Acidophilus, Vitamin D, Omega 3, massaging his neck at night with castor oil. He does well generally but if he has a virus, or is exposed to chemicals, in laundry, dishwasher, candles, CHLORINE, etc. his tics increase regardless of food. I am sorry you are feeling so overwhelmed, I completely get it. Within the last two weeks or so I have been fighting with my self to admit that my 7 year old daughter is also presenting with tics. Different than my son. His are mostly resperatory, coughs, grunts, squeals. Hers started in retrospect with snapping her teeth together(closed mouth) so easy to ignore, but has recently started sniffing and and making a small raspberry kind of sound. Trying to keep positive but hard enough keeping track of one childs food sensitivities and what is causing what. You can drive yourself crazy! In my experience if it niggles at the back of your mind like the questions you've asked like the chlorine, usually you're on the right track. My son was having a breathing tic I had never heard before after driving myself nuts reading ingredients and racking my brain for what was different we realized he'd been swimming everyday at his friends. We asked him to avoid the pool for a few days and the tics disappeared, assuming the chlorine was the issue. Sometimes you find the answers sometimes you just have take a breath and realize you can only do so much. If you're like me you feel it personally, like you should be able to do more and fix this for your child but in my more sane moments I know I can only do what I can do. Be proud of yourself for persevering thus far, we all know it is not easy. It's much easier to throw in the towel, hide your head in the sand but even the smallest victory makes it worth it. Didn't answer most of your questions sorry but wanted to let you know there's someone else who "gets it". "