Tourette or "Other" Tics?

[Chemar]

PLEASE VOTE ON THE OTHER THREAD AND COMMENT HERE. THIS POLL IS NOT WORKING

 

Hi

 

I am very interested in determining how many of the users of this forum have received a Tourette Syndrome diagnosis for their (or their child-ren's) tics.

 

I welcome comments as well as to whether you feel you have been accurately diagnosed with TS or if you believe that the TS diagnosis is not accurate and that the tics are rooted in some other issue.

Also, if you have not been dx with TS, do you believe you should be

 

thanks for participating

[Andy]

Hi Chemar. I was the first one to post my vote and it should read that my son was given the TS label at age 4 after showing signs from age 2 which occurred after a vaccination shot. My son also then showed other signs of other conditions but we don't know if our own responses to that prevented anything worse from occuring or what?

[Chemar]

thanks Andy......could you vote again on the other thread cos the poll questions on this one didnt work. I am hoping folks will continue to comment here and vote on the other one.........thanks

[Andy]

did do.

[kim]

Hi Cheri,

 

I entered a yes on the other site. However, I don't believe, at this time, that Tourette Syndrome is necessarily an accurate diagnosis for either of my boys. I think if I were to try to enroll them in a clinical trial, they would more likely fall into the chronic tic category.

 

The name someone chooses to put on this disorder is really not a big issue to me, but the lack of thinking "outside of the box" within the medical community is.

 

I have come to feel that the neurologist who gave us this dx, does not really know anything about it, and if someone stood to make a great deal of money from it, i.e. large drug companies; it would probably be found that the remedies that so many are pursuing here, have at least as good, if not far superior results, as the drugs that help control symptoms.

 

Kim

[KJS]

My daughter did receive a TS diagnosis back in October and I'm not yet able to ascertain whether or not it is accurate. I am hoping that reading the postings here and doing other research will help us help my daughter regardless of her diagnosis.

 

Karen

[ad_ccl]

My son has a diagnosis of PANDAS.

I agree with Karen, my thoughts now are that regardless of what the diagnosis is - be it TS, transient tics, chronic tics, PANDAS - that the issues seem to be so similar - and the alternative treatments seem to help all the various tic disorders. Obviously with PANDAS there is a need to be on antibiotics whenever strep is present. The jury is still out on whether prophylactic antibiotics are the way to go, I believe there is currently research going on to look into this at NIMH. We decided to err on the side of caution and keep him on the antibiotics, although as time is going on and he is doing so well I do think we will continue to re-evaluate this. My original thoughts were to keep him on the antibiotics until he was 18 - like they did with rheumatic fever - we are now thinking this summer we may take him off them - big change!

[Guest Guest]

Hi Chemar

We had an informal diagnosis to TS a few years ago, and at a recent appointment at the Royal Childrens Hospital, a treatment suggestion involved a short course of medication for TS, even though I was congratulated for finding so many triggers for Matt with him now being 95% tic free.

 

I really don't know the difference between having TS or tics.

With him screens, foods and stress are triggers, and I feel he is super sensitive to all of these irritants depending on his total load.

Perhaps the whole population is sensitive with these kids being at the canary down the mineshaft spectrum.

 

Marina

[Guest Guest_efgh]

Chemar

 

I honestly do not know the difference between tourette tics and other tics. What is the basis for the tourette diagnosis ? How does the diagnosis really help ? All we need is that the tics should be under manageable level. The treatment protocol is the same and the tics DO wax and wane.

 

So, I am not sure as to where I should vote exactly.

 

Thanks.

[Chemar]

Hi efgh

 

it isnt so much whether you would diagnose it as tourette......I am checking on whether a doctor has dx tourette and how folks feel about that diagnosis based on other issues that they have tested and treated for.

 

so if you havent received a tourette diagnosis for your son you would vote on the other thread that has the poll with a NO vote

 

HTH

[susanna]

We received a Tourettes dx at our first neuro appointment almost a year ago. I believe he has PANDAS. At this point the dx doesn't really matter to me. Any sort of illness tends to set off the tics as do seasonal allergies to a lesser extent. We only do antibiotics with a positive strep diagnosis and that seems to be working for us. The elimination of artificial junk and initially eliminating and subsequently limiting foods he tested as positive to have also been beneficial.

[Guest bean]

My daughter has had both vocal and motor tics for over one year now. I have seen three neurologists and a child psychiatrist as well as other specialists. She clearly meets the criteria for TS according to the DSM. I have been very firm from the start that I do not want my child labeled. The diagnosis that has been used for insurance billing has been Tic Disorder NOS. I don't know if my strong personality or doctors hesitation about labeling have kept her from being diagnosed. The bottom line is if it walks like a duck, quacks like a duck,looks like a duck then it must be a duck. I have joined the TSA and would support in anyway however I don't feel the need to label my bright, beautiful, happy child.

[Chemar]

thanks to all who have commented and participated in the poll.

the poll results show so far that we have a 2:1 representation here of those with a TS diagnosis vs those without.

 

My reason for asking this is that I was challenged on another forum for suggesting that I think there are many people who are given a TS diagnosis when in fact their tics are rooted in some other issue.

 

it is also informative to see the breakdown of TS vs non TS dx just for my own interest.

 

again thanks so much for taking the time to participate. and I welcome further votes on the other thread as well as comments here.

 

[kim]

Chemar,

 

I always thought the angle you came from with the true TS and the possibility of a different subset, was because there is an identifiable family history, and this makes sense to me. I have a hard time believing that more of us would not have someone who remembers a close family member who had tics. A transcient tic, I could understand, but not vocal and motor tics for more than 1 year, which seems to be the general rule of thumb, if heredity is a factor in identifying true TS. I do believe a genetic vulnerability plays a part in this whole spectrum.

 

Kim

[mmazz]

Hi Chemar;

 

It was Chronic Motor Tics for my son, but the nuero told me that chronic tics/TS is one in the same.