New to this

[kbt]

I'd like to start by saying this forum is a godsend. My 9yo son started having eye rolling tics around age 7, about the time he started wearing glasses (he's slightly farsighted). Naturally I attributed the tics to the new glasses and after talking with several doctors and taking him to a few optometrists (none of which had a clue about TS or tics in retrospect) we opted that he only wear the glasses when reading. But once the tics started, they haven't stopped.

 

For 2 years, the eye rolling and what I can only describe as eye "widening" were the constants, with occasional vocal tics like grunting, coughing, nasal exhaling and humming. My own research pointed to TS or trasient tics, but I could never find a doctor to confirm. We were told his coughing was from allergies and he'd be prescribed Zyrtec or the coughing was from asthma and he was given an inhaler, when all the while I just knew they were stabbing in the dark. I had 2 optometrists assure me he just needed a new prescription to "cure" the eye rolling. So frustrating as most of you know.

 

Well, the eye rolling has all but stopped, but the coughing is the main tic now. He had a chest cold about 2 months ago and...voila!...cough tic. He can suppress it at times, like in class, but at home he relaxes I guess and tics all the time. A local osteopath who practices homeopathy finally diagnosed him with mild TS, for which I was relieved to have someone confirm my belief. He gave him one treatment, which did not produce any dramatic results. Hard to tell if it helped or maybe he was just waning, but it never went away. On his recomendation, we went to a neurologist to get a second opinion and she agreed with his diagnosis. No prescriptions though, as she didn't consider the case severe and suggested he may "outgrow" it.

 

He doesn't have the associated OCD/ADD that many speak of and he gets good grades. He usually has one tic a time, but occasionally two. We've been trying supplements (Bonnie's TS Control) for about a week and I haven't noticed any difference in the tics, but his behavior has been unruley lately. I've read that taurine (from the magnesium taurate) can cause edginess, so we're going to cut back. Perhaps getting a nutritional urine test is in order, I'm not sure. Or maybe trying an Mg and B vitamin regime witout the taurine.

 

Any help would be much appreciated. Oh, I'm going to try "no TV" for a while, too, but damn it's hard to keep kids away from screens!

 

Thanks for listening,

 

KBT

[Chemar]

Hi kbt and welcome

I am so glad that the Forum here has been helpful to you and do also check out the main website at http://www.latitudes.org for excellent info on Sheila's book and also articles on Triggers for Tics etc etc

 

Bonnie's vitamins are excellent and have helped so many people! however do be aware that some people do seem to have a reaction to them and tic more when taking them, either just initially and then they seem to improve...or in some cases, just not able to take them at all. It is usually a good idea to see how things go for about 2-3 weeks before giving up on Bontech supps as, when they work, they work really well and are by far the purest and best formulated supps for TS available. However, if things arent getting better after a few weeks, it may be that you would be better of using individual supplements best suited to your child's specific needs

 

As you have also already realised, some people get tremendous benefit from taurine where some just cant take it

 

In my opinion, it all has to do with individual metabolism and physiology, which is why having testing done to determine just what is needed really is a good idea.

 

I have been hearing a lot of good things about the attitude that osteopaths (D.O) have toward the alternative treatments for tics and TS, which is encouraging

 

BTW, I couldnt help a wry smile while reading you story re the eyes and the allergies........when my son was younger and had eye rolling and sniff/cough we also went through the "all to do with his eyes/allergies" stuff and also were told at one point he had asthma

Where he did and still does need glasses, he has consistently tested negative for allergies except to dustmite, and most certainly doesnt have asthma!

 

Anyway, do keep reading and learning and asking questions....eventually you will find what works best for your child. We are all her for you

[kbt]

Thanks for the reply, Chemar. The D.O. was very helpful, indeed. He talked matter-of-factly about TS and encouraged my son to talk about it (he calls it his "habit"). Yet, I'm not quite convinced that homeopathy is the way to go here. I would be very interested in anyone else's experience in this area.

 

Some other notes on my son's tics: Lots of physical activity seems to really trigger his coughing tic lately. And when he's angry or upset (he has 2 sisters and I can be a cranky dad ) he stops ticcing entirely. Got to be some emotional brain chemistry stuff going on there.

 

As far as the supplements, is it OK to give the initial dose (1/4 max daily dose) for an extended period or should i keep increasing to the max dose for his weight? Should I expect a breakthrough at some point?

 

Thanks again

[jjj]

Thanks for the reply, Chemar. The D.O. was very helpful, indeed. He talked matter-of-factly about TS and encouraged my son to talk about it (he calls it his "habit"). Yet, I'm not quite convinced that homeopathy is the way to go here. I would be very interested in anyone else's experience in this area.

 

Some other notes on my son's tics: Lots of physical activity seems to really trigger his coughing tic lately. And when he's angry or upset (he has 2 sisters and I can be a cranky dad ) he stops ticcing entirely. Got to be some emotional brain chemistry stuff going on there.

 

As far as the supplements, is it OK to give the initial dose (1/4 max daily dose) for an extended period or should i keep increasing to the max dose for his weight? Should I expect a breakthrough at some point?

 

Thanks again

 

Hi kbt. My son had mild single eye blinking when he was 5 for a month and it disappeared. It came back at 6 for a few months, then disappeared. At 7 he suddenly developed a terrible cough (1 wk after being sick). It lasted for almost 6 months. We went to an ear/nose/throat doctor and pulmonogist, and they both found nothing wrong. 4-5 months into the cough, the blinking returned. The pulmonologist diagnosed the cough and blinking as "tics", and to just leave it alone. When the cough stopped, the eye blinking stopped. 8 months later he started having the eye rolling tic, and this was quite severe. It would wax and wane, but then his head started to shake too and his speech would get slurred. We went to a neurologist at that point and we were presribed Clonidine. I was very reluctant to give it to my son at first, but we did AND it has all but stopped the tics. We give him as little as possible, and decrease it when he's tic free for a "while". If the tics return we increase it a little and they always go away within a week or so. It's almost 2 yrs since we started Clonidine and it's been a godsend. He has virtually no tics whatsoever. Also, you do not build up a resistance to it so you don't have to increase the dose (besides possibly a normal increase due to your child growing).

 

We do have behavioral issues with him that also wax and wane like a tic. He has months where he can be "on edge" and get upset easily, and then he'll be fine for months. It's not at all severe enough to warrant any treatment.

 

Honestly,..I'm not crazy about giving my son any medication, but he needed it (to quote the pediatrician, "you wouldn't think twice about giving a diabetic insulin"). We tried various diets and it had no effect...We tried MANY things, and they didn't work. I have no faith in diets as a treatment for this condition.

 

Just my 2 cents...I've been reading this forum for years, and I felt compelled to write a reply to you. Best of luck.

[Chemar]

welcome to the board jjj

I am glad that your son is responding well to the clonidine.

 

As I always try to stress, different people have different metabolism and physiology and so what works for some may not work for others.

 

There are members here who have had bad effects with clonidine and so they would likely say that they "have no faith" in it, just as others, like Jeff and his family, have had remarkable results from the diets that you say you "have no faith in"

In our case, my son had little benefit and many severe and very serious side effects to ALL the medications that he tried, whereas the use of supplements brought rapid, dramatic and long lasting (5+years now) improvement.

 

I also feel that it was the combination of supplements, correct diet, yeast and heavy metal toxicity elimination, acupuncture etc ALL working together that had the full benefit for my son. Sometimes people expect a miraculous result from taking a supplement, and when they dont see it, they dont look further into whether there may be underlying problems (like yeast, strep, pyroluria) etc that are preventing the supps from having full effect.

 

So I think it is important for us always to be open minded and to respect that there are many treatments available and many people who respond in varying ways to them.

 

I try to do that with regard to those who choose medication as their treatment, and I certainly wouldnt dream of suggesting to you that the benefits that you have seen with clonidine in your son must be wrong simply because meds didnt work for my son! and I would hope that you too would understand that others have chosen dietary changes or supplements or whatever because FOR THEM IT HAS WORKED, even though it did not for you!

We all have to follow the treatment that works best for us, and respect others who choose something different because it works better for them.

 

Again, congratulations on finding a treatment that is helping your son

[kbt]

Agreed, whatever works best with minimal side effects is the way to go. I'm just wondering if it's OK to stick with the small dose of supplements. My son actually showed no decrease and possibly an increase in ticcing when was taking half the daily max dose. I know correlation doesn't mean causation, but at the least it didn't reduce the tics. He seems to be ticcing much less with 1/4 the max dose. I'm wondering if anyone else has experienced this.

[Chemar]

kbt, yes, stick with the dose that is working best. you can always go up if needed.

 

we have found that my son has always responded to minimum dose of supps and so we have generally kept things there.

 

This again reinforces that different people have different metabolism/physiology

 

if it works...then that is what matters!

[kim]

For all the neuros and Dr.s with their condescending smiles, it would be interesting to initiate a conversation about this, get their patient "you're an idiot" smiles, and then hand them this.

 

http://www.sciencedaily.com/releases/2005/...50111174539.htm

 

I will be posting this under the Articles thread too.

 

JJJ,

 

I would tell my Dr. that I WOULD THINK TWICE about giving my son insulin, if it could have horrible adverse effects, and there was something to treat the source of the diatetes, not just the symptom. When an alternative therapy decreases a tic, we're told it's a coincidence or all in our/their head. When it's a drug, it's a different story. Clonidine appeared to be working for my son's too, then it didn't. The Neuro wanted to increase the dose, which I knew would make them to sleepy to function. Also, it did nothing to help their overall state of health.

 

I sure don't mean to sound like I'm trying to give you a hard time, and I too am glad that clonidine has helped your son.

Kim

[azhorsegal]

For all the neuros and Dr.s with their condescending smiles, it would be interesting to initiate a conversation about this, get their patient "you're an idiot" smiles, and then hand them this.

 

http://www.sciencedaily.com/releases/2005/...50111174539.htm

 

 

Wow, what a very interesting article. Not sure if this is a related topic, BUT, when I set an appointment for my daughter with a NMD for her tic disorder I also mentioned she had eczema. He made the comment that could be a sign of a problem in her digestive system. Her regular pediatrician who has given me ointments after ointments to calm her eczema never even suggested such a thing. Like the tics, I was told there is no cure and not much you can do. This article has made me think harder about what the NMD said. I'm looking forward to seeing this NMD, because he seems to be more open minded as to what could be causing all these problems in my daughter. Maybe I should email this article to my pediatrician. It's amazing how much I'm seeing MDs just being so closed minded. I mean, can't they at least take a "What if" attitude, instead of "no, it won't work." Thanks for sharing this article!

[kim]

azhorsegal,

 

Funny how this worked. I was replying to your post on a different thread, and went looking for the article here that you just commented on! Here was how far I had gotten with my response when I bumped into you here

 

azhorsegal,

 

When ever I read a post on eczema, the response from parents is almost always MILK as the primary suspect. From this article http://www.naturalfamilyonline.com/2-ch/47...a-treatment.htm

 

There are, however, eight common foods that make up nearly 90 percent of possible allergic foods. These are milk, egg, soy, peanuts, tree nuts, fish, shellfish and wheat.

 

This goes on to talk about using topical steroids, not sure that's the best idea for our kids? I have used many of these myself for a patch of psorisis on my elbow, and zinc oxide works just as well. You may want to see what you can find on it's use on a child and if it's effective for eczema.

 

Your second question is the one that keeps me up ALL NIGHT many nights.

**********************

 

Glad you already found it!!

 

Kim