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So I am thinking of changing out our multi vitamin to Bonnie's vitamins. I just bought the TS+Control. i figured since Mag/Taurine did nothing for my son why get the vitmain with the mag.Taurine in it?

 

Any thoughts? Has anyone seen improvement with these vitamins?

 

My son's tics right now are screaming (so hard to deal with), grunting, repeating me, arm flapping and gagging himself. He tics all day long with maybe a minute or two in between of reprieve.

 

I have him on a gluten free/corn free (as much as I can possibly remove) diet with glutamine/probiotic/borage/cod liver oil supplements.

 

We just started him on N Acetyl Cystiene as well 900mgs a day. Its day three of the NAC supps.

 

Any info anyone can provide will be helpful.

 

My son is 5 by the way.

 

thanks

Cara

 

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Just started my daughter (9) on TS Plus Control about 2 weeks ago. We do 10 a day and she's a real trooper getting those big capsules down! DD started with vocal tics at age six then added motor tics, Sometimes she had 5 or six she was doing in one stretch. We went to an enviro doc and she is sensitive to quite a few foods and airborn allergens. He started her on allergy drops six months ago. We are off gluten, dairy, eggs and peanuts. I run a hepa air cleaner in her room 24/7. Right now I would say she is 80-90% improved. Motor tics are gone and her little "yelps" have stopped. She still does some throat clearing and sniffing. I decided to try the Bonnies and I'm going to give it the 2 months. I think they they might be the reason she's having loose stools right now though, so instead of giving them to her all at once in the AM she's doing 5 in the morning and 5 before bed.

I feel for you, Cara. The screaming tic must be a hard one :( But he will be OK, you will figure it out. Our DD had a head flinging tic that was painful and scary for her. It was quite severe. When we changed her diet it subsided quickly and I haven't seen it for 6 months now. It's a puzzle to be solved..

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We saw a reduction in motor tics in about 48 hours. They went from horrible (tears and won't leave the house) to relatively tolerable . This was with a TOTAL elimination of both gluten and all dairy. It will be a year in August since she's had those foods and it's been a steady improvement when I look at the big picture. Finding out her sensitivity to eggs and peanuts, and totally eliminating those, also seemed to cause a little jump in improvement and I really think the allergy drops are helping too. We've been off of eggs and nuts and on the drops for 6 months now. Oh, and anxiety was a real problem, sudden fears and tears for no apparent reason. Haven't experienced that since the new diet. Now we are trying the Bonnies. It's all she takes besides her allergy drops. Hoping for even further improvement.

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Cara, are you saying that you are no longer seeing the improvements you reported with the NAC?

 

As I mentioned before, you do need to be careful of what ingredients are in the "natural supplements".....some companies add fillers and "other ingredients" that can be tic triggers! You really also need to be cautious of continuing to change and try too many things too soon. Sometimes you just have to wait a bit to see how things are progressing. But if you keep adding new things all the time, you will just confuse the child's system, as well as yourself as you will have no clear picture of what helps and what does not

 

re BonTech, we have never used them but I did base my son's original program on Bonnie's plan (before she had Bontech)

Summarizing reports we have had here over the years, many people do well on BonTech IF they in fact have TS. It is designed for TS tics so if a kid is ticcing for other reasons, it may help but also may not as it is specifically formulated for TS.

Also, some people have reported an increase in tics from the BonTech...varied reasons suggested. Those trying the fish oil supp again have varied responses, just as noted with other fish oils that some TS kids seem to be sensitive to, even when they are fine with fish.

 

It has been widely reported here that some kids show an initial increase in tics when starting BonTech, but then level off and start to show great improvement...again these are kids with TS

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Chemar - i think the N acetyl Cystiene takes 2 weeks to start showing results. We are on day 4 and things have not gotten worse. Overall things have gotten worse after I started the gluten free/corn free diet. I think its causing my son anxiety to have to eat foods he does not want to eat. I am hoping to calm things down with the NAC.

 

how will I ever know if he has "real" TS? for some reason I think you don't get the feeling he has real TS. You have mentioned this a couple of times in your replies but I am not sure how I can ever find out what is causing his TS. We are doing all the possible testing for allergies and nutritional deficiencies, candida, heavy metals, etc. We know he has an intolerance to Corn and a mild intolerance to gluten. His dairy intolerence was considered mild so our doctor did not recommend for us to remove dairy yet. I don't want to cause more anxiety for my son. Trust me, I don't.

 

But also know that his tics have gotten severe over a fairly short period of time. i would say within 2 months they went from mild to severe and it coincided with all the doctors appts and diet changes. So maybe anxiety driven?

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I am not saying your son does not have "real" TS Cara.....I always mention the possibility that the tics are caused by something other than TS as often kids with tics are misdiagnosed as having TS when in fact their tics are caused by something else. As genetic research advances, diagnosis may become more than just clinical but at present, it is a family history along with the presence of BOTH motor and vocal tics for one year that usually results in a TS dx.......however, many doctors are still sadly not yet clued up on the various other factors that can cause tics, and so they tend to give the TS label too quickly imo.......our PANDAS forum has many members whose kids were being treated for TS with no real relief, when in fact they were suffering with infection triggered tics...once they were put onto the correct antibiotics etc...things began to improve. And we have many other stories of tic relief finally coming when it was realized that it was not TS but something else triggering them.

 

Having said that

in response to your comments on anxiety............that is a MAJOR tic trigger and so yes, the increase in your son's tics may well coincide with all the attention being focussed on them causing him stress.

I would also suggest having comprehensive testing done re his food intolerence as if I recall, you had those done with hair analysis? I know hair analysis can yield some really accurate results on some things but I wonder how much so on allergies etc....it just may be worth having an allergist do the specific testing to know for sure, and so know that whatever dietary changes you are making are truly necessary.

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The diet changes are distressing for a kid...No birthday cake or icecream at the friends party, having to order that chicken sandwich without the bun...But we have discovered so many tasty substitutes it gets easier all the time and DD doesn't complain much anymore. DD still gets her treats, we just have to go to Whole Foods to buy them :) We even found a gluten and dairy free frozen pizza! I would stick with the diet if I were you, it can take time for the gut/body to heal and adjust. And, I like the Bonnies because I don't have to worry "what else is in there?" With our DD we look at the big picture, the progress over months rather than weeks. I agree with Chemar, don't throw too much at him at once, but I know it's hard when the ticcing is so bad you'd do just about anything to give him relief... I hope you see some positive changes real soon.

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Thanks all and Chemar I hope you didn't take my comments as being "testy" at all. I hope I didn't come across that way. I value all the advice you have been giving me. We did another allergy testing on Cole (it was a blood test) through our integrative doctor. It came back with corn (evere intolerance) and wheat gluten (moderate intolerance) and dairy (mild). The doctor told us to only remove corn and wheat.

 

Should I go to a western allergist and get another test done to confirm? The test that was performed was called and ALCAT. Have you heard of that before?

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Cara- Just thought I'd mention this; There's a book called "The Disconnected Child" by Doctor Robert Melillo. It contains a treatment for neurological conditions (like TS) that is non invasive balance, listening etc. exercises. You can do them at home and it can be made to be a fun game each day. My grown daughter, who has a Masters in Occupational Therapy, read the book for me and thought the premise was a good one. Some of the exercises are the same as what she uses with her patients with cognative issues. We did the program, at home, for a couple of months and this was, again, a positive experience. I think we lost interest because she was doing so well at the time but I would definatly pick it up again if the motor tics come back. Just thought I'd throw that out there as it's something you could try that is not stressful but rather can be calming and fun (we laughed a lot).

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