Causes of TS

[Guest Guest]

Hi Heather

 

my reply really was a generalised one and not directed at anyone in particular.

 

I fully agree with not calling something by a specific name or "label" if you dont have a clear dx or confirmation on it.

 

My response was also more as a result to my son's reaction...he reads a lot of the Forum posts here and elsewhere, and is often perturbed if he senses that perhaps parents are "ashamed" of admitting that there child has TS.. as he puts it....some people act like it is leprosy or some unmentionable disease....

 

I do stress again, this is truly not directed at anyone in particular here, so PLEASE dont any of you take it personally or take offense. I have the utmost respect and care for all the posters here, and tremendous admiration for the dedicated pursuits by all to improve their loved one's quality of life!

 

This is far more to reassure that person reading here that there is NOTHING shameful about admitting that you or your child or other loved one has Tourette Syndrome.....it is a clearly recognised , genetically inherited, neurological disorder involving motor and vocal tics. It brings with it MANY talents and other amazing attributes, and it can be successfully (and naturally) treated in order to minimise any life disrupting symptoms, and frequently these symptoms diminish with age.

 

When we were initially seeking the answers to my son's tics and behaviours, we truly went thru a lot of turmoil with some doctors and other therapists who did not want to use the term Tourette Syndrome for a variety of reasons....for us, the clarity of the diagnosis was a very positive thing.

 

Anyway, I truly hope that my comments here will be seen in the way they are meant....OUR experience that I am simply sharing for that person out their who needs to hear it. I am not for one moment suggesting that it should be the norm or that those without clear dx are somehow wrong for not using the TS label....FAR FROM THAT........just a very personal sharing of our family's story.

 

[Chemar]

???not sure why that last post of mine came out anonymously ??? Sorry about that.

[Guest Guest_Heather]

Thanks for the clarification Chemar

 

I would never want to offend anyone with my comment about hating the label. I apologize if anyone misunderstood that comment to think that I would be ashamed of admitting that my son had tourettes. It was not meant that way at all.

 

Within 4 months, he could be in a position to diagnosed as having tourettes since both vocal and motor would be present for a year. In my mind, however, I am not sure what benefit that label will have for us. We will still be using the same supplements and working toward the same goal.

 

As a high school teacher I just believe that although some labels are necessary, there is excessive labelling in our society today. When I approach a student's issues, I become familiar with the background of their problem and work toward a positive and supportive goal in helping them overcome any challenges they may face. I don't see the label as being a determinant factor in achieving success. I am not necessarily talking about Tourettes here but any label that may have been given to them.

 

I felt I had to respond in the way I did since after I made that comment about hating labels, you responded using the word "ashamed". It did appear as a personal response to my post and your reply perhaps would make others feel that I was ashamed to call it Tourettes.

 

I felt I needed to clarify that I do not feel that anyone should EVER be ashamed to have this disorder and I hated to see the word shame associated with my previous post. I love my son more than anyone in this world and I would be completely devastated if anyone ever made him feel ashamed for his tics or for having Tourette Syndrome if that label was given.

 

I love the fact that you have totally accepted his diagnosis of Tourettes. Your knowledge around this disorder is admirable and I appreciate reading all you have shared with the readers here. It has helped me tremendously.

 

Hopefully there are no hard feelings surrounding this.

 

Heather

[Chemar]

Only very good feelings Heather

[Heather]

Also, referring to the above, I may be unrealistic but I do feel that even though my son may be given a diagnosis of Tourettes, I believe that supplements may at one point eliminate the tics once we find the right imbalance. If the supplements are working as well as they have to this point, then it is obviously related to some nutrient imbalance in the body.

 

I am not ready to believe we have to wait until the age at which they sometimes diminish in adolescence. Only time will tell I guess and I am sure many would say I have false hopes.

 

Autism is being reversed in many children with the right supplements. Why not Tourettes????

 

Heather

[Guest Jean]

Heather,

In my opinion, having hope is good. I do have the same hope as you do. Life is full of hope. Without hope, our life will be miserable. Hope the best, and prepare for the "worst" (it may not be a right word to use. I'm not native in English. Please bear with me).

 

Chemar,

Your sharing is very much appreciated. It's hard to see our loved one acting differently (I felt hard to accept it initially). I learned a lot after I joined this forum. Your son's story gives me a lot of encouragement. Whether my son will be dx as "TS" is not important, as long as he remains healthy, and happy.

 

Again, I love this forum as everyone helps each other!

[Guest Guest_efgh]

Jean,

 

Yeah, its good to have a lot of hope in life.. But basically I am a pessimistic kind especially when it comes to precious child's health and such things keep me worried all the time. As you said, after I started talking to you all in this forum , I feel a bit better. I was so let down with his asthma and this added problem came as a shock to my life..

good to know that there is hope in this disorder.

[Guest Jean]

Efgh,

 

I totally understand what you meant. My son had whole night cough last night. He barely slept. I am exausted. Sometimes, I feel that I am in an infinite/endless loope. I am trying to keep myself up, and believe he'll be better as time goes on (although I feel very stressful often time). I learned from my worship "the time will come..."

[Chemar]

What would we do without hope!

 

I can clearly recall those early days when I was in such despair over what was happening to my son, and torturing myself over what I could have done to prevent it.....I too had been very nauseous thruout that pregnancy and he was late, so the OB insisted on inducing birth....OH MY! When his tics and OCD started, I went thru such a time of self recrimination, blaming myself for everything and feeling so hopeless for my dear son!

Then, after being literally bullied by the doctors to start him on the meds, when he only got worse and then developed all the serious side effects....more guilt and depression !

 

But, thanks be to God, the light was shining at the end of the tunnel and, after so much trial and error..we relied on MUCH prayer and Hope.......

he came off the meds,started the supplements and dietary changes etc.....and made the determined effort to meet the challenge of TS......... and look at where we are now.....

 

On that Local Hero Award cerificate that my son got there is a quote that reads:

"Courage is not the lack of fear. It is acting in spite of it"

[Guest ronnas]

A good topic...

 

For us I think that many factors contributed to Kurt having TS and other comorbid stuff...sometimes it is like trying to figure out what came first "the chicken or the egg"...

 

I had severe nausea and vomiting with my pregnancy and was on gravol, maxeran and diclectin.

 

Kurt was born at 36 weeks and was jaundiced.

 

I had many ultrasounds while I was pregnant due to bleeding, prem labor and high blood pressure (yep, my pregnancy with Kurt was rough).

 

He had asthma from the time he was 6 months old (about the same time I quit breastfeeding...hmmm...?milk allergy).

 

In hindsight I can see that he would have been a kid who would have benefitted from never having diary. When Kurt was 3 years old he spontaneously quit drinking milk and he preferred not to each cheese etc. About this time he started to speak (finally) and some other issues went away...again we never really connected this to Kurt not drinking milk anymore. As well, it was around this time that his asthma began to improve.

 

The summer that Kurt's tics began he had an untreated strep infection. We think he had rheumatic fever, and sydenham's chorea and PANDAS is also a factor.

 

That same summer Kurt was vaccinated and he was exposed to a pesticide at a cottage we were staying at.

 

Kurt was on prophylactic antibiotics for a year and now has "allergies" to milk, eggs, chocolate and corn...?leaky gut from the antibiotics.

 

We have no history of tics on either side of the family.

 

I think vitamin def. also had a role in all of this as well.

 

Anyways, I could go on and on with all the thoughts in my head on this. My other two children do not have the difficulties that Kurt does. I think many, many factors contributed to Kurt having TS. For example, my dad's side of the family has a history of rheumatic fever. My husband's family has a history of autoimmune diseases. Sometimes I think of it as winning the lottery on reverse.

 

I love the quote..."the tics become old"...I'd have to say we have gotten pretty use to them over time and I just don't notice them like I use to.

 

Ronna