One Year - Tics Very controlled - What now?

[Tracey111]

I am happy to report that if you met my son, you would never know he had tics. His new teacher has reported that she has not seen anything, even during reading...which was his big trigger last year.

 

I see a mild nose wrinkle when I look real hard! I give him full supplements Mon-Fri. If I miss one or two, I give him those over the weekend. Two weeks ago I missed a few doses and even went 36 hours (Sat) without any. He had a couple of temper trantrums on Sunday (which has not been the norm AT ALL lately) and I saw the nose wrinkle a few times.

 

There is some "package" food that has returned to his diet....but not too many preservatives...no MSG.....minor artificials...and I have tried to stay low salycilates (as those were a head jerk trigger for him).

 

Now, where do I go from here? I know that tics may disappear in one year. I am right around the one year mark. Will my doctor dismiss them as transient? How do I know if I need to continue all of these supplements? Has anyone been at this one year mark, thinking that they were transient.....and then they returned?

 

THANKS!

[guy123]

what are the "full supplements" you give him?

[Tracey111]

what are the "full supplements" you give him?

 

Magnesium Taurate, Calcium Citrate with Mag/D, Ester C, Flax Oil, Acetyl L Carnitine, GABA, NAC, Multi, and now I have added DMAE for memory issues. I dropped the B a couple of months ago b/c it tasted so bad for him and he can't swallow a pill....it had no adverse effect. All things that I found on this website and researched....the Acetyl, NAC, and Gaba were added last and that was the end of his eye tics!

 

So, I am thinking that I am "controlling" the tics....but how will I know if they would have gone away at the one year mark and classified as transient? I don't want to shock his system and he gets really frustrated when he has the tics.

[sarahp]

Hi

How did you know which supplements to give and where do you purchase them all from?

thanks

Sarah

[lynsey]

My two sons have gone a year or more with no tics, numerous times, and I think I am 'done"

with it, and then the tics "pop" up here and there. You never know what

environmental, seasonal, emotional, or other trigger will cause it to flare

up again. Although the reoccurrences didn't seem to be long-lasting, they

still popped up. However every case is different, and my ts doctor had told

me, as with the unpredictibility of the disorder, tics can disappear, for years

at a time, and even for good. You just never know.

 

My husband, who had very severe head/neck tics, had gone on a rigid diet

for several years and the tics went away completely. However he found

it difficult after years of adhering to a strict (and I mean strict) diet, and

he slowly lapsed into old eating habits and many of the tics returned,

and now he just lives with them.....

[Tracey111]

Hi

How did you know which supplements to give and where do you purchase them all from?

thanks

Sarah

Sarah,

 

I spent many hours on this forum listening and looking. I pulled up Bonnies Vitamins too, and looked at the ingredients. I googled each item that I found. I tried to spend as much time as possible looking at "what" the supplement helped with. I started him on Magnesium before I ever found this forum...as it was the first thing that I read about on google. From there I think I went to B vitamins (which I no longer give him). I can tell you that I made a list of all items found on this website and from Bonnie's. After researching them on google, I spent time trying to find out the amount to give children. I probably could have done this by going to a natural doctor, but didn't have the money. The food that I found to irritate him the most was salycilates...this was after eliminating artificials and preservatives. I thought I was being a good mom by giving him fruits and veggies all the time....turns out most of the ones I gave him were high salycilate and they sent him into a head bobbing motion. I found that list on google too!

 

The final thing that I added, which I swear eliminated the eye tics, was NAC and Acetyl L Carnitine....there was a post several months ago about NAC and apple cider vinegar!

 

I can tell you that on the weekend I have been testing to see if he does "worse" without his vitamins. My husband and I are starting to notice that by Monday he is having minor tics....if we slack on the supplements Friday - Sunday. I think that they are helping him A LOT! It took time and patience.

 

Good Luck. I see you are new to the forum, so keep on reading. PS - His started a few weeks after a vaccine!

 

It is the long term/short term memory and focus that I need help with!...That and he can not read well.....no tics = great, but I want his brain to function at the highest potential!!! He is hard worker, and I don't want him to get frustrated with learning!!!!

[faith]

Tracey,

how much gaba and nac do you give? If you recall, I am using that too, things were going okay and are not too bad, but I am not feeling like it is as much as I'd like, we still have the eye twitching kicking up and vocal is not as much, but I do still notice. I am also having much issue with my son's attention and focus and follow thru on schoolwork and tasks as you mentioned. I don't know what to try for this because I don't want the chance of increased tics, but I am at a point where I am starting to think I am never going to get over this hurdle with his time management and staying on task, its a constant battle. What other supps do you think help?

 

Thanks

Faith

[Tracey111]

I am glad that the tics are going better....I recall our mutual worry!! I give him about 250mg of Gaba, 200 mg of NAC, and 250mg of Acetyl L Carnitine. He is about 55 LBS and is 7.

 

OK, the Focus stuff drive me nuts. I gave that Focus Attention Plus when I first started this, but don't know if it is something that I need to add...I recall it had GABA in it. The teacher said it made a difference, but I changed a LOT of things at that point. Look up the Nature's Sunshine Focus Attention Plus and see what the ingredients are! I want to try ginko, but am nervous about it. I am going to seek the help of a professional soon.

 

I started DMAE for memory. I got nervous about what I read on it, so he only gets a tiny bit!

 

I am still trying the 1/2 supplements on the weekend and by Sunday I see minor tics. Mon, Tues, and today I gave him 1/2 supplements and tonight while I was reading to him, I saw the tics. It is like I am trying to PROVE to myself that he will have tics. I have this subconcious thought that maybe they were transient......I want to be able to tell the DOCTORS (who say nutrition have nothing to do with it) that he has tics without the supplements!

 

Let me know if you find anything that works.

 

Tracey

[faith]

Tracey,

I am surprised that the tics are being controlled by only 200 mg. of NAC and 250 mg. GABA? I give 250 mg. GABA twice a day and 1200 mg. of the NAC (two 600 each capsules). Now while I feel it SEEMS to help in that things are not as bad as they were this past Spring, we still have an eye twitch which almost seems chronic at this point, I just can't seem to rid it. The vocal is still creeping thru, I thought the GABA helped that but it does come and go so I cannot be exactly sure these supps are the key. Interesting that you say if you decrease the supps then you start to see the tics, but you mean you don't if you stay at the right dose? Is that correct? I am feeling I have to add more maybe? (my son is about 50 lbs and 9 yrs old). I also give B6 and magnesium and try to give extra B1 to see if that helps any. I would try to carnitine, but I did before and thought I saw increase, so don't know if I want to try again.

 

I am afraid anything that helps with the focus is going to increase dopamine and then increase tics, so don't know which way to go. I was looking at the ginko too, but not sure yet. Its the omega 3's that I really want to do, but again, fish oil may increase tics and flax I'm not sure of because it was a very high on our Igg testing two years ago. I have to just do something and hope for the best.

 

Faith

[Caryn]

Faith,

Have you ever tried tryptophan?

I got Suzanne Somers new book and in one chapter the interviewed doc talked about different body types and one was a seratonin type and another GABA. Don't have the book in front of me right now as I am cooking in the kitchen I will do a little digging on that later. We used to use GABA but now use tryptophan. Our son has NO symptoms right now at all, mood wise, tic-wise, even his handwriting is great.

We are doing cod liver oil too.

But I have to research more on the seratonin vs GABA types..... Anyone else with info jump in. I will come back to this tonight or tomorrow...

Caryn

[faith]

Caryn,

hi, and thanks for your input. I have not tried the tryptophan, but I would be interested to know more about what you suggest re the gaba vs. tryptophan. (that is along the lines of 5-htp, right?) I am starting to wonder if the gaba is really helping at all or if this was just coincidence, or if it could be losing steam about now? I have read in a book recently, that Gaba taken in a pill is not that effective because it cannot cross the blood brain barrier? How else could you get that, I understand that glutamate is the precursor to gaba, but I suppose it would be the same problem? Did yo give this for your son? I am under impression you attribute the gluten free to be the biggest contributing factor to controlling his tics, but if there is anything else you feel helps, I'd be interested.

 

Thanks

Faith

[Char]

Tracey,

Hi, I'm new here and I would like to say hi. I have a question for you, if you don't mind. I am considering trying to give my son Acety-L-Carnitine for his eye rolling. Just wondering if you had any side effect from giving it to your son? Did it help your sons eye ticks right away? Any advise on the supplement would be much appreciated. Thanks !!

[momaw]

Faith,

Have you ever tried tryptophan?

I got Suzanne Somers new book and in one chapter the interviewed doc talked about different body types and one was a seratonin type and another GABA. Don't have the book in front of me right now as I am cooking in the kitchen I will do a little digging on that later. We used to use GABA but now use tryptophan. Our son has NO symptoms right now at all, mood wise, tic-wise, even his handwriting is great.

We are doing cod liver oil too.

But I have to research more on the seratonin vs GABA types..... Anyone else with info jump in. I will come back to this tonight or tomorrow...

Caryn

 

 

Hello,

I was reading through this older post and had a question. You state that your son has no symptoms now. Did his symptoms disappear after you switched from GABA to tryptophan, or was it before?

Thanks!

[Caryn]

I was reading through this older post and had a question. You state that your son has no symptoms now. Did his symptoms disappear after you switched from GABA to tryptophan, or was it before?

 

We attribute our son's change in symptoms mainly to the healing of his leaky gut. The GABA was prescribed by our Dan Doc to help with sleep issues as at onset our son had some pretty bad sleep patterns and was often tired and crabby.

 

We moved to tryptophan after some time because when we started the gluten free and dairy free diet I did a lot of research and read that often times these kids have hyperactivity/ attention problems because their dairy-free diet is low in dietary tryptophan. We added it and found that it was very beneficial. We have since kind of phased it out when we reintroduced dairy again in moderation. Our son is hitting his 2 year mark on the diet this month and he is doing fantastic. The healing process was a long slow road. Hope this helps.

[abbe]

Caryn,

 

My doc. wants me to start cod liver oil with Nicholas. Have you found that to cause your child to tic?

 

 

abbe