Becky G

My three with TS (inherited but not through direct lineage) started to show signs at around 3 or 4 years of age. That's when we first noticed it. They would have mostly throat-clearing tics back then. At around age 10, the tics got more complex. Our 16yo had about a year and a half with no tics at all when she was about 13 and 14 but then they came back. There are definite food/additive triggers and seasonal allergies can be a trigger for them too. Also lighting (fluorescent).But stress plays a part too. I imagine there are other triggers that I don't even know about. When I said inherited but not through direct lineage, I meant that it came from my great aunts and uncles but that grandparents weren't affected by TS. I never was either. My dh's family has autistic spectrum traits and one of mine has Aspergers as well as TS. I sometimes wonder if the mix of the two traits made the TS show up even more. No one else in my family tree seems affected by TS since a few generations ago and none had more than one child affected.

The person who told me about l-carnitine originally didn't say it was something to take continually so I was under the impression it was just for flare ups. I will have to revisit that topic, I guess. Regarding school accommodations, we home school so they get all the accommodations they need. So would it still be worth while to seek an official diagnosis? Would I start with a ped and ask for a referral to a neurologist? With winter illness season coming on, I think it might be time to remind myself and my kids to keep up the supplements. Thanks for your help.

My kids are rarely sick but they do run fevers (I rarely do) My girls especially have been known to spike pretty high fevers. But it has been a few years since I remember anyone being that sick. My oldest of the three with TS used to get extremely ill and, out of desperation, I took her for a few chiropractic adjustments when she was three. She was a different girl after that and seemed to fight things off better. The only autoimmune disease in the family would be my mil. But she had a dye injected for a surgical procedure that this is related to. I have fibromyalgia (mild and manageable) so I guess that might fit. I can usually tell when one of the three are getting sick or seasonal allergies are kicking in because their tics flare up then too. I mentioned this to a doctor and she looked at me like I had two heads. I would like to find a doc who gets it but I am not sure who to call first. I have not had their zinc or anything tested. I didn't know anything about zinc and it is hard to find a doctor who understands. Any other things I should look for regarding patterns of illness? Thanks so much for your help. Going to check that link now.

Yes, you are right that we don't vaccinate. He is doing dramatically better. He only took the l-carnitine for a couple of days. I think he noticed such an improvement that he did feel the need to take it anymore. He still has a ticcy sound in his throat from time to time. My attention has been elsewhere (getting ready to buy a house). Oh, and Chemar, I am pretty sure that TS is inherited in my family. There were a couple of people a few generations back who "twitched", as my birth mom said they called it back then. I have never had any signs of TS myself but Aspergers has come down through my husband's side of the family so I sometimes wonder if that doesn't magnify things somehow, make things more likely to appear. (Forgive my lack of putting this more clearly. I am PMSing and my brain is iffy today.) Anyway, thanks for the answers. They give me something to think about. Oh, one more thing. My oldest one with TS had about a year or so of no tics at all when she was about 13 or 14. She is 16 now. The neuro who diagnosed her said there was a good chance the kids would outgrow it. And one more question. The 10yo started with all the symptoms of TS last year. There were times we wondered when she was younger but now we know. So I am wondering. Is it worth our while to get her an official diagnosis like the older two have? Thanks.

I am wondering if tics are always going to be a part of my children's lives even with diet change and supplements. Will there be waxing even if they are abstaining from offending foods and such and taking their supplements regularly? I was so relieved to see my son's dramatic improvements last summer but the tics got so, so bad for a while this fall. He wasn't being as strict with diet change and supplements but I had never seen him so bad. They seemed to get better with the introduction fo L Carnitine for the first time (only seemed to need it for a few days) I guess my basic question is: do tics resurface no matter what? Thanks.

My daughter takes the AFP Peptizyde as needed and I have never noticed any odor.

Ok. Here is what we did. We stopped dairy again(Friday) as soon as I realized it was causing a problem (and that he had had so much of it). We also started up the supplements again (Magnesium, fish oil). I picked up some L-Carnitine last night. He had two doses of it today and the tics have backed way, way off. He is doing a lot better than I imagined after how bad he has been the last few days. I don't know if it is the L-Carnitine (which is said to help with eye and throat tics), the dairy getting out of his system and the supplements getting back in, or a combination. Probably a combination, but I don't think he would have had such a dramatic turnaround with out the L-C. This is the first time we have tried it but a friend swears by it. Anyway, thank you for all the thoughtful and helpful replies. I will definitely start reading labels for hidden MSG too. Thanks again! Becky

In the days preceding this, he had made himself some chocolate milk and he had also had pizza and ice cream. He may have had some cold cereal too. When we originally started back in June, everything went away, everything. It would flare a little between now and then and it would seem to be related to artificial colors (Husband bought Fruit Loops a few weeks ago--huge trigger!) or too much dairy. But this severity is new. The vocal tics are all day. His eyes are closing much of the time. He just took some ibuprofen because he has had a headache all day. Don't know if it is tic-related or allergy-related. I have had a headache too and it seems to be allergies. Someone on a different board suggested L-Carnitine and I had planned on trying that last time if what I was already doing didn't help. So I think I will head out and get some and see if it helps. Wondering if I should wait longer for the dairy to get out of his system but I hate to see him so miserable.

A little background. Back in June, I found this site, bought the book about alternative therapy for TS and started changing the kids' diets. (I have 3 with TS.) We took out artificial colors and dairy, added magnesium citrate and Coromega and noticed a huge improvement. Now for today: The 13yo has been ticcing almost constantly the last few days. He had quite a bit of dairy earlier this week and we know this is a trigger but he is so much worse than I have ever seen him. It is mostly vocal tics, not throat clearing but voiced. He closes his eyes a lot too. It actually seems to be getting worse and he hasn't had dairy in two days. We have gotten lazy with the supplements but he has started those back up again too. My husband bought a different laundry detergent than we usually buy but none of my kids have appeared to be sensitive to changes like that. We have had a LOT of rain that just finally stopped. He has complained of his allergies bothering him, mostly his eyes. I suggested he soak in in epsom salt bath as I heard this helps get the toxins out. But he is not desperate enough (he prefers showers). Any thoughts on what to do next? I thought he would be improving by now but he actually seems worse today. Thanks, Becky

Omegabrites is the fish oil most commonly recommended for people on the autistic spectrum. The 7:1 ratio is more beneficial for them. I got it for my dd with Aspergers but she prefers the Coromega because she says she doesn't like swallowing the capsules. The Coromega seems to help too, especially if she takes in more than once a day. She and two of my other children have TS as well. The fish oil really seems to help.

After our oldest had severe reactions to the DPT many years ago, we stopped vaccinating. Our other four had no vaccines. We have never regretted this decision. It all boils down to what risks you are most comfortable with and I am more comfortable with the risk of the possible illness than the possible damage from vaccines.

Thank you both. I am just getting back to reading your responses. I got some epsom salts for the kidlets and forgot all about it so thanks for the reminder.

I have been figuring things out on my own for years because we never lived near any major cities. There is a lot of help on sites like this and others. But it would be nice to have some help. I now have three with Tourettes, the oldest of them also has Aspergers and the next one also had dylexia. My first born (19) has ADHD and some other quirks (husband thinks there is a touch of AS in there too, which is funny, or maybe not, because dh has way more than a touch of AS) My 2yo shows every sign of being a carbon copy of the firstborn. Super high energy and very advanced in language. Anyway, all this to say that I am exhausted dealing with this on my own. My husband leaves it all to me and is not even a good sounding board. I have learned a lot from this site and two of my dc have improved dramatically since we cut dairy and artificial colors and added in magnesium and fish oil. Our biggest issues right now are with the 16yo. She is the only one on meds for her TS and it would be nice if she could be off of them. But with her sensory issues that go with AS, it is not something I want to do without the help of a doctor. Thanks for any and all help.

I just wanted to jump in and post a success story. I have been married to my husband, who has Aspergers, for 20 years. It was difficult for some years until one of our children was diagnosed with Aspergers and then I started to understand my husband better. I often took his silence personally. I still do sometimes but then he does something that reminds me how devoted he is. He is the steadiest man I have ever known. A great dad in his own way. Not much of a baby person but once the child could talk, he was hooked. I have always hogged the babies to myself so this worked out fine. Don't expect him to discuss his feelings. Don't expect him to enjoy small talk or visiting with your friends or family. Mine does not care for anything unexpected (He would make a great hobbit). If I want a lot of conversation, I have to make sure I have lots of friends to talk to because my husband is pretty self-contained. But he is helpful and sensible if I need to talk something over with him, as long as the TV isn't on. Hope this helps. Becky

Thank you for the link. I will post to you first before I read it. Otherwise, I may go off on a rabbit trail and forget to come back. ;-) I have read a few things about the Kids Calm. Is there any reason that it is better than just regular magnesium and zinc? Is it the ratio or just the way it is delivered? Thanks. I will look for it. Also, my son is around 100 pounds. Would the kids' version still be the best choice? And would I be a bad mom if I gave some to my 2yo night owl to get her to sleep? :-) (Don't know how to add the smilies for the side yet.) Anyway, it would be such a relief to them to be able to get to sleep more easily. They don't complain but I know it can't be fun to try and get to sleep when you are ticcing. Again, thank you. I will start slowly so I can see what is helping before I try something else. Becky

My 16yo is on a gluten free diet and that has made a dramatic difference for her. She has very little dairy too. I got some digestive enzymes from Houston Nutriceuticals that she takes when a meal might have a little gluten in it or if she wants to cheat a little. Another thing that really helps, when she takes it, is Omega-3s. I actually have 5 children. The oldest is nearly 19 and quite ADHD and quirky but also a genius. He reacted severely to pertussis vaccines as a baby and has had no vaccines since he was a year and a half or so. Because of his trouble, none of the other children have been vaccinated. The TS comes from way back in my family tree and the Aspergers comes from my husband. The ones with TS all started at around 3 or 4 with vocal tics, like coughing or throat clearing. They were very mild until each child got to be around 8 to 10. The tics change and come and go. Mostly facial tics, a few quiet vocal ones. The 12yo has cut way back on dairy for other reasons. But he is having a growth spurt and I have heard that can be a trigger. The girls' tics aren't bothering them much right now but my son is ticcing most of the time these days. It must get really annoying for him. He doesn't want to go anywhere because of it. And he is my most easy-going child. Their diets are better than most kids their age but there is a lot of room for improvement. I have heard good things about the shampoo you mentioned. I will look for it. Thank you for the advice on the supplements too. Becky

Hi. I have been reading a lot lately about alternative treatment for Tourettes. I have had some success with alternative treatments for my 16yo daughter's Aspergers and thought it was time to look into it for Tourettes. My 16yo is also diagnosed with Tourettes, as is my 12yo. The 10yo is not yet diagnosed but has all the signs. Anyway, I am looking into this now because my 12yo son is having so much trouble with his tics. He is having more vocal tics and is self-conscious about them. He was tried on medication briefly at age 7 (clonidine, I think). That lasted for about two days because he was so sleepy he couldn't function. I am interested in this for my older daughter too because she takes a low dose of Zyprexa (!). I would rather she have an alternative. I have been hearing a lot about supplements and am interested in finding out where to start. I did order the book that is recommended on this site but it won't be here for awhile. Should I just start with magnesium (and what should the ratio of calcium to magnesium be)? I have read a lot about l-carnitine and wonder if that might be a good one to try too. It might help to point out what tics are really bothering them. 12yo-vocal tics are almost constant these days 10yo-eye-rolling tic that can give her a headache at times 16yo-mostly muscles tensing up in different parts of her body Sorry if this is kind of all over the place. I have looked up so much and tried to find doctors in my area that would take our insurance today that I am a little loopy. I am asking now because I am going to Whole Foods this weekend to get some different shampoo for my 16you. (Just found out that the sodium laurel, etc, in most shampoos are bad for people on the autistic spectrum.) Thanks, Becky