Causes of TS

[Heather]

Hi all,

 

I read somewhere that Jennifer's goal (I think it was her) was to have her son supplement free one day which is shared by all of us I am sure. I believe my son's disorder was caused by several factors as follows:

 

1) Poor diet (very little fruits and veggies, overuse of package foods and additives, high sugar)

2) Stress (move to new town)

3) Fully vaccinated

4) Antibiotic use for ear infections as a toddler

 

I feel that it has taken years to develop this disorder and that once we have fully detoxed, as long as we change this unhealthy lifestyle we should be able to live supplement free. My questions to anyone reading this is, "Is there anyone who has a child with this disorder that seemed to develop for no apparent reason?" In other words, I am curious if anyone had the tics just start with none of the above factors being present. It makes me feel better when I do hear from others that there is definitely a causal factor in most cases, in which case we are all on the right track in treating it to be supplement free. What do you believe were some of the things regarding lifestyle that you feel led to this disorder?

 

Also, do you know of others who are now completely free of supplements who treated it this way? I know that tics can be present and sometimes go away without using supplements but I think as parents watching our children's reactions to these supplements we know this treatment works.

 

Just curious.

 

Heather

[Marretts]

Hi Heather,

 

I too share your thoughts, My sons symptoms started in September after 3 bouts of illnesses, high fevers, vomiting and ear infections in a matter of 6 weeks then all this started. As a child he had many ear infections which was treated with antibotics which in turn have their own side affects of which my son reacted with diarrhia and vomiting on pennicillan. My son also had a very large absys on his gum around September and I think all this impacted on his nervous system. I hope all this supplementing will eventually help. He also had very high metals in his system but I don't know where from. I hope to get to where your son is now. We still have shrugging a lot and rolling of the eyes but a bit better. I notice in the a.m at school he is a bit worse maybe nervous. The sniffing stopped after I took him off dairy. We are off to the Bio-chemist today.

[Jennifer]

Heather,

 

I agree with you 100%. Our son didn't have diet or stress issues, but he is fully vaccinated and was on constant antibiotics as well. I strongly feel that vaccinations are the leading culprit for neurological problems.

 

We look at factors such as heavy metal toxicity, low immune functions, allergies etc., but something had to have disabled the body's basic ability to function properly. And vaccines are largely to blame.

 

On www.news.yahoo.com there is an article on Nov.11, 2003 about the study that found no significant link between vaccinations and autism, but they admit that one group of children who received thimerosal containg vaccines had a higher incidence of tics. How interesting.

 

 

We go see a new doc Friday. I'll let you know how it went when we get back, which probably won't be until Monday. We got his blood chemistry panel back from Body bio and there are quite a few things that are wrong. Will fill you in later.

 

 

Jennifer

[Chemar]

well.......our story is different.

 

On December 23rd 1999 my son(then just 10yo) and his oldere brother were out playing with neighbors and came in for dinner with my youngest acting "strangely".......I was deeply concerned but the older boy assured me nothing bad had happened.

 

The next morning my son was in a deep depression that caused him to miss school for weeks. This was followed by severe tics and OCD behavior that I dont even want to mention as I dont want to initiate triggers for any readers here.

 

The change in my son was literally overnight.

 

As we sought answers and were finally given his diagnosis, and began to study TS, my husband(in his 50s) realised that his "habits" from childhood....for which he had been punished and ridiculed, and so had learned to "hide"....were TS/OCD too, and that his late father was probably not just "eccentric" as we had all thought, but was infact also a TS/OCD individual. For my husband, there was an enormous sense of relief in finally understanding himself after all these years!

 

In our case, this is a genetically inherited disorder and, although we have been able to identify triggers that cause things to intensify plus been able to bring the condition from very sever to mild by supplements and good diet and environment....still, my son has classic TS and tics daily. Thankfully the OCD is dramatically diminished, and the tics are no longer ones that cause injury or life disruption.

 

I should add that my son was on meds for a year, and i firmly believe that they not only made his condition worse, but also triggered some very serious side effects.

 

As he gets older (now 14) I certainly do hope he will follow the "norm" and have the TS symptoms continue to diminish.

 

However, we have learned to accept and adjust and that in itself has brought us all a lot of peace.

[Heather]

Thanks for your comments.

 

Chemar,

 

Just out of curiousity, it is maybe on here somewhere, but have you ever had tests for heavy metals done? Hope you don't mind my inquisitiveness. I'm just trying to learn more about all of this.

 

I also believe that my son's disorder has a genetic origin, along with the environmental causes. Although no one (that I know of) in the family had tics, my nephew had some mild signs around the age of 10-11 and I, myself had some anxiety/panic attack issues as a child. There is also some mild depression in the family although not significant and could be ignored but I think it is all related (spectrum disorder).

 

Anyway, from what I read, people are genetically predisposed to certain ailments and when your body becomes out of balance, you develop whatever you might be genetically predisposed to. That is why many people might live the same unhealthy lifestyle and not suffer the same ailments.

 

Jennifer,

 

How was the body bio work done? With your old doctor? Thanks

 

Heather

[Heather]

Chemar,

 

I am glad that you and your family have come to this peaceful acceptance. It does make me feel less stressed about the minor tics my son experiences now. Thanks.

[Jennifer]

I think there is some confusion regarding tic disorders. "Tourette Syndrome" is infact a genetic disorder. Tic disorders are not. The trick would be establishing whether or not it is a genetic cause. I'm not sure, but there may be some tests. Just like with autism. Some cases are genetic- they test for the fragile x chromosome while the other cases seem to be vaccine injury or environmental exposure to toxins.

 

We've never pursued having our son tested for a genetic link because no one in our family has ever had anything like this. It is also interesting how most children suffering from this disorder are boys. I read an interesting study once involving rats. The male and female rats were injected with the same amount of toxins, (I think it may have been mercury) but, the male rats were the ones who were most affected. One possible reason they came to the conclusion to was estrogen. It seems that estrogen has some protective properties to it. And boys obviously don't have the same levels which would leave them more susceptible to injury. I don't know how true this is, but I thought it was interesting.

 

As far as the body bio test goes, our doc. started up an account with them and ordered a test kit. Their blood chemistry pael asks for several more tests than the standard ones seem too. We should get the fatty acid one back around the beginning of March. They could tell, however, just from the blood chemistry that he needs unlimited amounts of omega 6 and 3- so he must be really low.

 

 

Jennifer

[Chemar]

Heather

yes, we had heavy metal testing and he showed slightly elevated mercury which came down after his detox treatment and chlorella supplement.

 

 

With regard to the genetic link......there is currently no test that i am aware of for the genetic link for TS.......it is determined more by family history and observation.

 

There are a number of theories around about why the gene switches on in some and not others (my older son shows absolutely no signs of tics, OCD or the learning disabilities that his brother has).........maybe the triggers are environmental, maybe hormonal, maybe the vaccines etc etc etc........

so many "maybes ".....and then again, as with many genetic disorders, the gene may just be programmed to switch on at a certain age.

 

In my son's case, we now realise that he had eye tics and some vocal ones from a very young age....we just didnt know what they were and they were such that they didnt cause him or us any problems.

it was only after his 10th birthday that everything became very intense.

[Guest Guest_efgh]

Regarding the possible causes of tics in my son's case, I had mentioned in my post in the other thread "going to sleep problems"

Jennifer, you mentioned TS is genetic but tic disorders are not.. But aren't they the same actually when it persists for around a year with both motor and vocal tics..

In our family, like yours no one even has heard of tics and its just not there in the family as far as we know..

Chemar, when you say that your son still has classic TS - are they noticeable? Is he able to suppress or control it in the public? what are the tics that he has now?

Any idea why its the general "norm" that the tics do get better with age in most of the kids.. My only ray of hope is that prognosis aspect with regard to the tics. Why is it said that in general after 10 kids tend to get better - any idea or thoughts??

[Guest Jean]

Heather,

 

I am adding mine here...

 

Efgh,

 

Also re: your posting in another thread. I can’t agree with you so much (in terms of the similarity of 2 kids).

 

1) child over due 11 days with c-section (BTW, I read a article mentioned relevant high percentage of TS/tics association with c-section born children)

2) The whole 1st trimmest vomiting during the pregnancy

3) Infant formula from day one, and very little breast fed for a month

4) lots of inhaled (non-steroids) due to his asthma and other meds. as a toddler.

5) 2 years of allergy shots

6). No family history - btw, he is not dx. as "TS" by his doctor now.

AND LAST BUT NOT THE LEAST

6) BAD LUCK (of course) – his symptom happened a month after my miscarriage. He is so looking forward to having a sibiling.

 

It’s just hard to accept it but I’m learning these days, and tend to accept it (especially after I joined this forum).

 

Heather/Marretts/Efgh,

 

Just out of my curiosity. I noticed 4 of our son’s symptoms occurred almost the same time (i.e., Sept 03). So the history is short. I was wondering if your doctor actually dx your son “TS”.

 

BTW, I haven’t had test results out but will keep you posted once they are ready. It's been a tough week for us. My son has been had high fever for 4 days already with stuffing nose and bad cough. He feels so board to stay in bed doing nothing. I let him watching TV 30 min/per day (since I stopped TV about 2+ months). He was ok the first couple days, but his eye was rolling bad yesterday (3rd day) during watching. I have to back off. It’s just very stressful.

[Guest Guest_efgh]

Jean

 

hope your son gets better soon. HOw frequent is his eye rolling now..

 

Jean, I see A LOT of similarities between the causes of TS in our kids. both asthma medicines, infant formula from day one .. the similarities are really amazing.

Jean, TS diagnosis according to me is just a label and is semantic. Since tics tend to come and go, we need to worry when the tics bother our children irrespective of the official TS diagnosis. A kid may have some 100 motor tics and no vocal tics and hence does not qualify for the TS diagnosis. Or a kid may have only vocal tics for years together and still not qualify for TS diagnosis. I think we just need to attack and address the problem then and there. I remember reading it somewhere which is interesting - a mother asks the doctor "will my son's tics get any better or worse with age?" for which the doctor says " I don't know about it but I can assure you that the tics will get older and you will get used to it!".

So, lets hope and pray that our kids are able to cope and manage without any major problem due to the tics.

[Guest Jean]

Efgh,

 

Thank you for your message! His tics are mild. They usually become noticeable if he gets tired or excited. I’m happy with his current tic situation (vs. last November’s), and hope they can be further improved. You’re right about dx. of “TS”. My husband always says it’s just a label (TS vs. tics). I think I’m lucky to find this forum. Thanks for the sharing!

[Heather]

The way it was explained to me by my medical doctor was that to be diagnosed as Tourettes (as you said EFGH) both vocal and motor tics have to be present for one year. Otherwise, they are labelled as transient tics. I hate the label thing as well and don't like to use the term tourettes syndrome. My son's tics started last summer so he doesn't have an official diagnosis but when they found the strep antibodies, then he was sort of labelled with PANDAS I guess. I don't really agree with that label either as my Naturopath said many cases have high strep antibodies. It is all part of the leaky gut affect causing autoimmune disorders where your body's immune system goes out of control and starts attacking its own tissues.

 

Anyway, the C-section comment was interesting. My son was born C-section, however, he was breast fed for a few months.

 

Thanks for the comments on this.

 

Heather

[Chemar]

For our family, that "label" was actually a relief.......it was good to have a clear answer, both for my husband after all these years, and for my son, who suffered terribly with confusion in why he was ticcing and unable to stop it. Once he got an answer in the form of the clear TS dx, and started to learn what that was, it actually helped to diminish his symptoms as he stopped stressing about them! (as did we)

 

My son doesnt hesitate to let people know that he does in fact have TS....it has brought him great understanding from others, whether teachers, peers or anyone else....they now know why he tics and he doesnt get ridiculed, bullied, misunderstood, punished or anything else associated with his tics....if anything, he has found a blessing thru it, and expressed that in the speech for which he recently won the award.

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005846.html

 

I can fully understand why those who have transient tics or whatever, stay away from the "label" TS.....but I find it odd that, if there IS a dx of TS...why anyone would want to hide it?

Isnt it better to have the label "Tourette Syndrome" than to have some of the other labels that the kids put on someone who acts "differently" and to have teachers continuously reprimanding a kid for what they cant help?

 

I just dont see why there should be almost this "shame" in calling it what it is....just the way we call any other health situation by the name it is dx with....whether a "cold" or "asthma" or "allergies" or "diabetis" or whatever........

 

Also, letting others know about it brings both understanding for the person who has it, as well as helps to educate others about something that is very poorly understood and so brings TS into a more positve light.

 

Better IMHO to just acknowledge the fact, do all you can to help minimise the aspects of the disorder that are disruptive or disturbing, and move on!

As one poster on BrainTalk wisely put it "It's OK to Tic".....

[Heather]

Just want to clarify my point earlier. I do believe it is important to bring it out in the open and tell others around you what is going on. As soon as this started with my son I was into the teacher explaining the situation and encouraging her to educate the others in the classroom of what Will was experiencing.

 

I explained to him right from the first that he had a disorder and that we were working to help him but that it was ok to tic and he should never feel ashamed of it.

 

My problem with labels with this disorder is that there is so much unknown about identifying what aspect of the disorder they have. I don't have a problem labelling that fact that they have a disorder and I will be the first to educate everyone around us what is going on. However, even on here with people who have studied it extensivetly, when we were talking about the causes there was confusion over what was actually tourettes, how it could be tested, etc. etc.

 

Even when someone is diagnosed with Tourettes, there is different outcomes as they grow older. Sometimes it goes away in adolescence, sometimes it doesn't.

 

My son was found with high strep antibodies and diagnosed with PANDAS and then my naturopath found no sign of this so does he have PANDAS or doesn't he. Unknown again. It was a psychaiatrist who said to me he had a problem with labels when there really was so much unknown.

 

Then I was on the phone with someone about a supplement and he asked, does he have tourettes or does he have mercury induced tics? Well at this point we don't really know. I'm not sure if we will ever really know.

 

My problem is not that I want to hide it and pretend it doesn't exist. I just don't want to put a label on something at this point with so many unkowns.

 

Unlike your husband as a child Chemar, my son does have a clear answer that it is ok to tic and you should not try to hide it. It is something he can't control and he should never be ashamed. Even though we want it to stop and and working to make it stop, we NEVER make a big deal of it and never make him feel like he should stress about it. He is encouraged to tell others that he has a disorder and we are working to treat it but we don't actually have a label for it.