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chap

new to this forum......

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hi there

 

Im new here. Im a mother to a seven year old girl with very full on vocal tics. She is currently having a chronic waxing period that has lasted over 27 days. In the nearly three years since we have had the TS diagnosis we have had worse tics, but none that last so long. I dont know if they will ever go away at this point....... Its quite depressing for both of us!

I guess I was just after some support ( I live in New Zealand, and there is very little knowledge/awareness of TS here) and was also wondering if anyone had any suggestions for reducing the symptoms.

We are not on any meds, have cut out dairy and am now considering reducing gluten.

Also, Ive wondered for a long time about moon phases- do they effect tics?

thanks :(

chap

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Welcome chap,

 

I'm sorry you are worried about the vocals. My son has had very bad vocals for about 4 years now. He has had the long lasting ones that really worried me and we thought they would never go away. We put him on risperdal because we did not know what else to do it was bad. He does not take risperdal anymore, but I understand how medication may seem like the only way to go.

 

My son also tics more with the moon. Having one of those right now. I would try the diet change and see what happens. My son has gone 3 months with his vocals waxing, then they will slow down, I don't know if I would even call it waning because they still seem bad sometimes.

 

I truly wish you courage during this time, it can be hard, but it does get better even when it feels like it is not.

 

CP

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thanks for that csp....

 

Its school holidays here, so Im trying to relax her as much as possible......

I have two younger boys. I worry that they too will have tics, its hard with one child with vocals , imagine three!

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hi

I have a link in my signature documenting the things that helped my son if you are interested in looking into any of those

 

waxing moon = waxing tics/OCD for my son altho lately it has been a very mild effect which we attribute to his being 191/2 yo now, as well as his great care with diet and supplements

 

l-carnitine helped his vocal tics when they were really bad tho I know some (like CSP's child) dont handle l-carnitine well

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Hello,

 

Aceytl l carnitine took my sons throat clearing tic away

 

abbe

 

thanks abbe, I'll try it. I just spoke to a health store over here who said I could give her a 500mg capsule. do you think that would be the right dose? Shes seven, but very slight, probably only weighs about 21kgs (46.2lbs)

 

Im very grateful for everyones feedback.

chap

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Hello,

 

First I am so sorry for your discouragement. I had put together my theory as to what was ultimately going on with my son's tics and why I thought Daniel was reacting to food chemicals a while back. Here is the link http://www.latitudes.org/forums/index.php?...mp;hl=sulfation and also some follow up links to this post http://www.latitudes.org/forums/index.php?...Carolyn+N\ and also http://www.latitudes.org/forums/index.php?...hl=Carolyn%5C.N .

 

We have been dealing with tics with my son since he was 3. I have posted on here many times about all the supplements he is on. The only thing I can say is he is almost 9 and pretty much tic free now. He is heading into the peak time for tics for his age and with all of the supplements and diet change I truly believe his intestional track and liver are getting what they need now to help process out what he could not do by himself prior which was food chemicals (MSG, food dyes, high fructose corn syrup). It takes time for the body to heal once on the right supplements. So don't at all give in realize that you are on the right track.

 

B6 has been a HUGE part of what helps Daniel. He gets anywhere from 50 mg's to 100 mg's a day. He get the 50 mg's from Bonnie Grimaldi's vitamins TS-Plus. Anyway when Daniel's tics get going I always give him an additional 50 mg's.

 

Speaking of the TS-Plus vitamin for Daniel it has helped him so much. He has been on it since he was 5. I did not realize how much it was helping him until I tried switching to a different product and within a month his tics came back full force. Another time I tried cutting his dose in half, just to save some money, and he seemed fine for a while. Then again I think his body became depleted of the vitamins and minerals, from not getting enough, and the tics have came back. So I realized I could not "cheat" and try to save money. He is on the recommended dose for his wieght now and doing great. It is an expensive product but well worth it. The biggest pain is it is so many vitamins for him to take but it is such a part of his life and he realizes now the benefit of the vitamins which makes it so much easier.

 

Another thing that has been sooo helpful too is Glycine. Glycine helps the neurotransmitters run more smoothly. He gets anywhere from 2500 mg's to 5000 mg's a day. When he is has really bad tics I give him 10,000 mg's for several days in a row. I use Carlson brand glycine.

 

Another product that he takes that has been really good for him is NAC (N-Acetyl-L-Cysteine). I buy the Vitamin Shoppe brand generic form. He currently is on 600 mg's a day along with 1,000 mg's of vitamin C a day. The vitamin C is helpful when taking NAC to help prevent kidney stones from building up from what I have read. Although my doctor told me this really is not too great of a concern. But the NAC helps the body remove chemical toxins and other toxins from the body. It supplements the liver. The vitamin C is important one way or another for many reasons. But one primary reason is to lower histamine levels.

 

Back to the NAC I know of at least 2 other people on the forum who had really good success with the NAC. It certainly would be something to run by your doctor.

 

Have you tried giving her Benadryl or some other anti-histamine to see if her tics reduce? I know I and many others have seen a reduction in tics with Benadryl. Some people, however, will have an increase in tics when taking it but not for most. My thought is if you see a reduction in tics you know that her histamine levels are elevated which more then likely they are elevated one way or another.

 

The other thing that really helps is taking Epsom Salts baths. Use 2 cups of epsom salts in a bath and soak at least 20 minutes. I noticed with my son that I don't see a sudden reduction in tics after the bath it is usually a couple hours later.

 

May I ask what kinds of foods she is eating. Do you buy any processed foods at all?

 

Have a great weekend!

 

Carolyn N.

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Hi Carolyn

 

Thanks so much for your reply, wow it was really comprehensive!

Im going to have a good look at your plans as soon as poss!

The only thing she currently takes is Acetyl L Cartinine , which we started a week ago, on the advice of others on this forum. She is on a 500mg per day, which I worry is a lot for her as she is only slight (weighs about 46lbs). I note that you refer to it as NAC (N-Acetyl-L-Cysteine)- is that the same thing?

We are trying our very hardest with her diet. We cut out all dairy about 2 years ago, no MSG, no preservos or artifical colours, mainly organic food. We have also tried to elminate gluten as much as possible in the last two weeks.

Finally, in the last 3 days, the tics have subsided (although not completely) but who knows why.....a wane? the cartinine...? gluten...? luck??!! It was the longest wax we have ever had lasting over 30 days.

Its amazing that your son is doing so well, but isnt it hard to get him to take all those supplements? I am in awe of you both.

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Hi Carolyn

 

Thanks so much for your reply, wow it was really comprehensive!

Im going to have a good look at your plans as soon as poss!

The only thing she currently takes is Acetyl L Cartinine , which we started a week ago, on the advice of others on this forum. She is on a 500mg per day, which I worry is a lot for her as she is only slight (weighs about 46lbs). I note that you refer to it as NAC (N-Acetyl-L-Cysteine)- is that the same thing?

We are trying our very hardest with her diet. We cut out all dairy about 2 years ago, no MSG, no preservos or artifical colours, mainly organic food. We have also tried to elminate gluten as much as possible in the last two weeks.

Finally, in the last 3 days, the tics have subsided (although not completely) but who knows why.....a wane? the cartinine...? gluten...? luck??!! It was the longest wax we have ever had lasting over 30 days.

Its amazing that your son is doing so well, but isnt it hard to get him to take all those supplements? I am in awe of you both.

forgot to say, we are also doing epsom salts baths...

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Carolyn - Thank you so much for putting in so much effort to your posting. I have been searching the boards for ages and so many answers to my questions were in that post above. Thank you, thank you, thank you!

 

 

 

Chap - I'm sorry you are going through such a tough time and I wish I could give you more helpful advice but I'm just beginning this journey myself. I wish you more peaceful days ahead.

 

 

Zoe

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Carolyn,

 

Question about the vitamins you are giving your son. I'm trying to make sure I understand this, that in addition to giving him Bonnie's vitamins (which can be about 18-20 a day) you are giving him the additonal, glycine, c, NAC and L-carnitine? I just want to make sure I get this correct?

 

Thanks for your help.

 

Linda

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i'd say go completely gluten-free. as long as there's ANY gluten in the diet, you may not see improvement, as there's still damage being done to the lining of the intestines. besides, how would you know it's the gluten unless you give it 100%, yk? i've researched this alot, and am having my daughter go gluten-free starting tomorrow for her facial tics (which i believe is PANDAS).

 

did you notice any improvement when you went dairy-free? we're going casein(dairy)-free with the gluten-free, as it seems to heal the gut better. then we may re-introduce the dairy in about 6 weeks.

 

good luck hon. this is all so scary and confusing for us all. hugs...

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Chap,

In New Zealand?

 

Look up Dr. Rodney Ford!

He is a ped. gastro who specializes in gluten intolerance/celiac. He helped me via email a few years ago and was terrific. He's located in ChristChurch. 64 3 377 3602

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