Seeking mom of child who had transient tics

[LindaF]

Hello! I'm working on an article for a national women's magazine on transient tics in kids. I need to include a U.S. mom whose child had transient tics (motor or vocal -- not both -- lasting from a few weeks to under a year). Ideally, the mom was afraid that her child had Tourette's, and perhaps even took him to the doctor, but the tics went away on their own in under one year. The point of the anecdote is to reassure moms that not all tics are Tourette's, and that transient tics are relatively common in kids. If you're interested in participating in a brief phone interview, please e-mail me by Tuesday, July 25 at linda-eric@lserv.com. Also, please feel free to pass this message on to anyone you know who may fit the bill.

 

Thanks so much!

 

Linda

http://www.lindaformichelli.com

[kim]

Linda,

 

Your post evokes a whole range of emotions.

 

Just a couple of thoughts.

 

By reassuring some, you may terrify others. Transient tics and Tourette Syndrome are BOTH unusual movement disorders, sometimes accompanied by vocalizations. Transient tics can RESURFACE possibly with increased severity after a period of absence, sometimes years. So what exactly is the point of the article?

 

To point out that there is a whole range of severity and longevity involved in chronic tics, transient tics, Tourette Syndrome, etc., and that there IS success with improvement outside of Prescription medications, in my opinion, would make a great article. Possibly you could incorporate the original idea, however distinguishing transient tics, with this one yr. time frame, in my opinion, is a load of BULL.

 

I have two sons with one of the conditions mentioned above, and I would STILL have a hard time fitting them into a ONE categorie.

 

I hope others will expand on this, even if they disagree. I am certainly not the most eloquent poster here.

 

Kim

[Chemar]

I think you said it VERY eloquently Kim!

[LindaF]

Of course...but the only problem is, you don't know what the article is about, who its target audience is, how long it is, what magazine has commissioned it, who else I'm interviewing, or even whether the author has TS herself (yes!). I've told you only about one anecdote I'm looking for. Unfortunately I can't share too much info about the article before it's pubished, but rest assured that it's on a broad topic and I'm interviewing psychiatrists, neurologists, and experts from the TSA.

 

I still do need that one anecdote from a mom, so if you're interested, please contact me. Thanks!

 

Thanks,

 

Linda

[Chemar]

Ideally, the mom was afraid that her child had Tourette's, and perhaps even took him to the doctor, but the tics went away on their own in under one year. The point of the anecdote is to reassure moms that not all tics are Tourette's,.....................

 

Hi Linda

yes, we may not know the details of your article or anything about you.

But what you posted above is what we have to go by....a suggestion that mom's whose kids have transient tics can be comforted while those whose kids have Tourettes................?????should what???? be "afraid"????

 

The majority of us here have found that there is ALWAYS reason for assurance and hope, nomatter what the origin of the tics! That is also the focus of the book that Sheila Rogers, who administers this site, has written

 

And as Kim has pointed out, transient tics can and do frequently return again, just as tourette tics can wax and wane and also sometimes go into a form of "remission". The fact that transient tics may "go away in a year" is absolutely no guarantee that they will not return if the underlying issues are not addressed, just as the so called one year of vocal and motor tics is in no way always an accurate way of diagnosing Tourette Syndrome

 

So we encourage ALL parents not to be afraid and reassure ALL that there are helpful ways to naturally reduce tics.

 

We have also learned the hard way that many "experts" like neurologists, and psychiatrists and even sometimes the TSA tend to put Tourette Syndrome into a diagnostic and treatment "box" that has rigid parameters..........and there are testimonies galore on this site, mine included, that those parameters are VERY misleading and narrow!

 

So, that is why both Kim and I (and no doubt others here) experienced such mixed emotions at your post.

 

I wish you well with your article, but I too would hope that it wouldnt exclude the same reassurances for moms with kids who DO have TS and you seem to want to give to those whose kids have "transient tics"

 

There is ALWAYS light at the end of the tunnel if one takes a look!

 

all the best to you

Cheri

[kim]

BLESS YOU CHERI,

 

Just thought of addressing this, was exhausting. What a beautiful job you did. Thanks from the bottom of my heart.

 

We have also learned the hard way that many "experts" like neurologists, and psychiatrists and even sometimes the TSA tend to put Tourette Syndrome into a diagnostic and treatment "box" that has rigid parameters..........and there are testimonies galore on this site, mine included, that those parameters are VERY misleading and narrow!

 

BRAVO

 

Kim

[azhorsegal]

I second that Kim, Cheri said it very well, what you highlighted in red. I for one have personally found that statement to be true, as depressing as that is. BUT, have found hope by being a part of this forum, and no matter if my daughter as transient tics or TS (Nuero put it in a "over a year" box before he'll give it that diagnosis), she does in fact have tics. Oh, she also has verbal tics at times, so I guess that leaves me out of the article, lol.

[kim]

az,

 

Just wanted to tell you if you haven't heard any vocals for 8 months, just wait another four, and you can call the neuro. and tell him your daughter no longer has TS! But....if you get a week of vocals 1 month later, you'll have to let them know, it's back again. Wanted to share that very important information.

[Brit]

Thank You all, very well put. I totally agree with what all of u have said. I have a daugher who is almost 17 years old. She was diagnosed with tourettes (motor) at age 13. Prior to age 13 she would have what they called waxing and weaning. They would come and go, but were very minimal and not an issue. At 13 it was full blown to the point of haveing 4 diffrent tics going at a time.

 

As I read about the article that is to be printed I look at it a bit puzzled. If I had read an article such as the one u r telling us about when my daughter was younger I may think ok, it will go away if we just give it time. WRONG. Some people have no idea what some of these children with tourettes endure as a result of their tics. Personally junior high was a living ###### for my daughter.

 

Sorry, I am getting carried away with this. I get like that when I talk about these things.

 

The point I was going to make is that Linda says in her message: something to the effect of the mother taking her child to the doctor because she was afraid it was tourettes. Well if it is tourettes it is better safe than sorry. If the doctor says it seems like tics but r not a problem at the time then it is better to know what u r dealing with and keeping your eyes opened. There is some mom out there somewhere that may read it and say ok so it's nothing it will go away. Oh my that couldn't be more wrong.

It is called waxing and weaning it comes and goes. Does not last for months at a time. It is not interfering with their lives. Well that was my daughter from age 2 until 12. Sometimes u didn't see any for a day, a week, a month or more.

 

My point to linda is that with her now at almost 17 it has for the past 4 years interferred with her life almost on a daily basis. To the point that she does not feel normal with the issues that she has. (tourettes among other things). I will save that for a later time.

 

Linda, I know u said that u can't give us all the information and that u need an antidote (something like that)LOL sorry very tired. We are going by the information that u did give. Sorry to vent on ya like this, but I am only going by what u wrote in your post.

 

Personally I think if u want to do a good research article u may find that many people may be interested in reading one about children that had tics that waxed and weaned at a young age and then went full blown later in life. (Just my thought for the night).

 

Thanks for the vent,

Britney's Mom

[kim]

Brits mom,

 

Did Britney have a MMR booster at age 12?

Could you say how long of intervals you usually saw during the waxing and waning stages?

 

 

I have 12 minutes of battery power left, then no computer until a tech comes in and replaces my mother bd. My power cord connection won't work.

 

 

Kim

[Brit]

Brits mom,

 

Did Britney have a MMR booster at age 12?

Could you say how long of intervals you usually saw during the waxing and waning stages?

 

 

I have 12 minutes of battery power left, then no computer until a tech comes in and replaces my mother bd. My power cord connection won't work.

 

 

Kim

 

Hi Kim,

Britney's waxing and waning varied from time to time for many years. She has gone for months at a time with very minimal tic movements. Nothing very noticable. They at times have been exyremely under control. And just when u think u have made progress, BAM! It blows up in your face and off she goes. When the tics are out of control her anxiety and stress increases, which in turn makes her tic non stop. We are in the process again trying to find a happy medium. It is so stressful, because u sooooooo don't want to do it, but u can't help it. I do beleive that Britney had a MMR booster at age 12. (sorry memory problems). I would have to look at her immunization records.

 

Take Care,

Brit's Mom

[azhorsegal]

az,

 

Just wanted to tell you if you haven't heard any vocals for 8 months, just wait another four, and you can call the neuro. and tell him your daughter no longer has TS! But....if you get a week of vocals 1 month later, you'll have to let them know, it's back again. Wanted to share that very important information.

 

Well her last vocal tic was about three weeks ago, so looks like we have a long wait.

 

So what's up with the MMR Booster at age 12? My daughter is 7, should I be concerned about this booster?

[kim]

AZ,

 

Since your daughter is 7, more than likely, she received a dose of MMR at 1 yr. and again prior to school entry, or around age 5. You shouldn't need a booster at 12. Apparently, some of the Dr.s didn't adopt the recommendation of giving the 2nd dose at 5, so some of our kids are just getting the 2nd dose at 12.

 

I have MANY concerns about the vax. program. I keep an eye out for ANYTHING to do with things that are suspected in this syndrome i.e. mercry/heavy metal detox inabilities, other environmental factors, an interplay btwn virus and infections, an exaggerated immune response, strong family history of tics disorders where genetics may play more of a role, than in other cases, etc.

 

Here is a situation I'm dealing with right now.

 

My 13 yr. old son, has just spent the last 5 days at a hotel with a family who has a daughter playing in a baseball tournament. My sons friend (brother of ball player) appears to have chicken pox. He was vaccinated against for CP, so was my son. He has many lesions, and a temp of 102.5. His parents took him to a walk in clinic, where they gave him Keflex, and oral steroids. They said since he had the vax. it couldn't be chicken pox, and called it contact dermatitis. Hmmmm. His mom said that she had chicken pox twice, once a mild case at age 4 and a severe case at age 19. He was seen by a Dr. on Sat. By Mon. evening, his Mom said it had progressed to clearly looking like chicken pox.

 

This is an article I just found

 

http://www.cogforlife.org/chickenpox.htm

 

My son's friend, may have done him a favor by exposing him, thus giving him a "booster"?

 

One the other hand, since according to this article, the level of antibody is so much higher when aquiring a case of naturally occuring CP, is there a chance my son will develope it, and have problems with TS symptoms? Right now, I feel like the best thing I can do, is support his immune system, watch what he eats, and Pray. The only flair of any significance that he has had, since starting "natural interventions", was during a go around that he had with a staph infection.

 

I had written once before, about a poster that shared his story of developing TS at age 13, after a bout of the Chicken Pox. He is now 33 and still battles anxiety, tics etc.

 

 

Kim