There is light at the end of the tunnel

[lynsey]

Hi everyone,

Several years ago I was a frequent visitor to this site. My husband has TS, fairly significantly, and I had 2 sons

who started displaying tics and other symptoms in kindergarten. Thereafter followed what seemed like a

nightmare of days and months (years?) of anguished worry on my part, about how bad they would get, what would I do to help

them, how would their life be? I tore myself up inside. I have terrible stomach problems from these years

of unnecessary worry.

I wanted to tell you all, those of you who have young ones just starting to exhibit symptoms,

try not to panic like I did! My two sons are teenagers now, one graduating from high school and

the other one halfway through high school. They are exceptional students and exceptional human beings.

Nothing was ever as bad as I imagined it would be. There were waxes and wanes, but I learned to wait

out the waxing, and wait for the waning! I read and used many of the member's advice here in this forum, from

adjusting their diet, to getting LCD computer screens, to knowing what situations exacerbated their

symptoms, to fighting for them with the school administration. All helped immensely. Most of their

symptoms subsided as the years went by, but there are still things that come and go. We've learned to deal with it.

 

We got through it. But we didn't just get through it. Slowly, slowly I could see their specialness emerging.

I saw things in them that you rarely see in todays youth. They are wonderful mature young men now, with

a sensitivity, empathy, kindness, and understanding of others that is truly unique, and is often born of dealing

with adversities such as TS. Yours will be too. Don't despair! You will look back, years from now, and wonder why you stressed so much.

[Chemar]

Hi lynsey and thank you so very much for that encouragement!

 

we had a thread running here some years ago about positive things related to TS which I will search for and bump up again.

 

thank you so much for coming back to share your special news with us and remind us all again about that light at the end of the tunnel

[Toms_Mom]

Thanks so much for posting lynsey! We need to hear more stories like yours. I try to tell myself not to stress, but it is sooo hard not to worry!

[Calicat]

That was a really wonderful post, lynsey--thank you so much! My daughter's symptoms are very mild most of the time, but I can't help but worry about what the future holds. Especially, "Will it get worse?" But I have also considered the character-building aspects of dealing with such a thing, like you mentioned. You sound very lucky to have your boys

[lynsey]

Thank you too Chemar,

you were a frequent poster at that time when I needed help

and I learned a lot from you......(and from Claire, she was

a wealth of knowledge)

 

If there is any questions I can answer for anyone else,

having gone through this with my 2 sons, I would be happy to

[bmom]

Thank you for the post. I do have a few questions. Can you tell me if there was the worst years and when it got better age wise? Did you ever have to resort to meds even for a short time? Were there different triggers for your boys or the same?

[lynsey]

Hi bmom

I'm happy to answer you. The primary years seemed to be the "worst". That would be grades kindergarten to about gr. 4. But the good thing

about these years was that most kids this age are oblivious to tics. Have you ever watched a bunch of children in the schoolyard? I would venture to say

that more than HALF of children have tics of some form. The more I saw this, the more I relaxed. Eye blinking, shoulder shrugging, tapping,

even twirling while walking - I saw it all - most parents were totally oblivious that their child had a tic. I decided I would be oblivious too.

Grade 5-8, as they got more confident in school, the tics lessened. They were good at "hiding" their tics as well. Camouflaging it, if you will.

 

I find in highschool, it has really lessened even more, to the point it almost seemed it had stopped. But occasionally they have

a brief episode of a certain tic. For example, a mild head jerk, or my youngest makes this gagging tic (but can disguise it while

he's at school - turn his head to the side when he does it or whatever). Then, you must know, like the tides! tics WAX and WANE.

So that's my mantra. They are waxing. and they should wane. And they always do. I learned not to get too shocked by certain tics

I saw. Just kept telling myself, "this too shall pass".

 

Yes, I did resort to meds. In addition to tics, my oldest son had a restlessness that he (yes, he) found very annoying. He said, "I FEEL

SO RESTLESS!!". I hated seeing him suffer with this. I didn't want to put him on Ritalin though. So after much research, and conferring

with his doctor, we started a very, very small dose of Clonodine. 0.25 mg three times a day. It worked just nicely to diffuse his restlessness,

and had the added benefit of diffusing his propensity to tic. Yet it was so minor a dose that he was not sleepy, and had no side effects

whatsoever. I decided to put my other son on this as well for tics. They both took it throughout grade school and now in high school, my youngest

has stopped, my oldest stopped for a while but the restlessness came back, so he is back on it. Are you familiar with Clonodine? It is technically a

blood pressure medication. It made sense to me, if their blood pressure was lowered ever so slightly, their restlessness and urge to tic

would hopefully also be lowered, and we found that to be true.

Truthfully though, I found eliminating as much as possible artificial colors and artificial flavors from their diet was a big, big help in lowering and

even eliminating their tics. If you have a hard time having them on a strict diet (as I did), I could at least do this.

Sweets were big triggers (Halloween and easter were nightmares) but they had to enjoy being kids so we lived with the consequences...once the

sugar was out of their system the tics generally waned. Also, playing game-boys was a trigger, watching non-LCD screens, or playing

video games with fast flickering lights. What HELPED diminish their tics was: a good night's sleep, healthy eating, and a relaxed non-stressful home environment.

Hope this was helpful. Anything else I can tell you, please let me know.

[ilovedogs]

Thank you Lynsey for coming on here and posting your experience. Yes, I have stomach problems from some of the worry over my son. The biggest thing that bugs me is his anxiety and OCD stuff. The tics I try my best to take them as they come.

Glad to hear that your children have grown up and made you proud! It's always great to read success stories, no matter the challenge itself, KWIM?

 

Thanks,

b

[lynsey]

Thank you Lynsey for coming on here and posting your experience. Yes, I have stomach problems from some of the worry over my son. The biggest thing that bugs me is his anxiety and OCD stuff. The tics I try my best to take them as they come.

Glad to hear that your children have grown up and made you proud! It's always great to read success stories, no matter the challenge itself, KWIM?

 

Thanks,

b

 

Oh my goodness, you hit the nail on the head. Anxiety was the NUMERO UNO symptom we had to deal with, with both boys. They also had some OCD too.

But anxiety? BIG TIME. They still have it. Yes, anxiety was BY FAR more problematic than the tics.

They inherited that from me. Over the last 10 years I have learned cognitive therapy in dealing with my anxiety, and have

passed the techniques along to them, and it has helped them immensely.

[lynsey]

ilovedogs:

 

This is the best book I've ever read, for people with anxiety: The Worry Cure, by Robert Leahy

It teaches you how to deal with anxiety. These are the same techniques I taught my sons.

See this excerpt:

 

http://www.cbsnews.com/stories/2005/12/06/...in1099210.shtml

 

 

Lynsey

[bmom]

One more question Lynsey as I appreciate your answers so much and I am fully in that worry mode now- I keep thinking one day I will go without worrying every second about this. Do you have any other children? I have a daughter and I am hoping we can make it without her having problems.

[lynsey]

Hi bmom

 

You can ask me as much as you want, I know how you're feeling!

 

I wish I could just hug you and tell you not to worry about things, but you are a mom, and a very caring mom,

and so I know it is hard not to worry. But I did great damage to my health from this worry. My stomach is terrible and

I must be on stomach medications now, probably forever. This is what my worry did to me. I used to come home

after dropping my boys off at school, and lay down on the couch and cry. I prayed a lot. I talked to my mom a lot.

My husband, who has much worse TS than my boys, kept saying to me, "they're not bad at all! You should have seen me!"

but I could not be consoled. I prepared myself for the worst. I expected the worst. But the "worst" did not happen.

They went through years of little tics, changing tics, anxiety, a little OCD. I slowly realized that, if the "worst" happened,

meaning they deteriorated into full-on, constant ticcing (my worst fear) -- I could do something about this!! I was not

without options! I was not helpless! I could help them! This realization unfortunately hit me far too late for my poor tummy.

In my husbands' day, they didn't know what to do about TS except hit him with heavy doses of Haldol, which made

him violently ill. Today, we know SO MUCH MORE! We have so many options! You are raising children in an era

where new treatments and knowledge about TS are occurring every day! And this forum keeps you on the forefront

of these treatments and options. I prefer the natural approach, if I can do it this way, and so I always start with this.

 

As regard to your question about your daughter, I can only tell you that boys are 4-5 times more likely to inherit

the gene that predisposes them to tics, than girls do. Some publications even state the likelihood even higher, if

you are a boy, to inherit the TS gene. However everything I've read states the likelihood for girls is very small.

This doesn't mean that girls can't get TS, but it seems they are much less likely to get TS. I have no daughters,

just my two beautiful boys, but in my husband's family - his two sisters did not get TS, but my husband did. There were other factors

at play that made my husband's TS explode when he was young. He almost died from a serious infection, and this

seemed to trigger his years of significant tics. So you may have the gene, but not express it with any significant

tics.

I hope I helped. Feel free to ask me anything else. (You can also email me if you like)

[ilovedogs]

Lynsey, would you mind sharing what kind of tics your boys had? And how did the clonidine help those tics? I have a friend whose son is on Prozac and she says it helps his tics and another friend whose son is on clonidine. She said he still tics but just less frequency to it. Did you ever try Bonnie's vitamins or that regimen or did you ever give them magnesium or B6? My ds seems to have a lot of mouth and jaw tics and his orthodontist keeps pushing for braces but I keep holding off b/c of these tics. I can't imagine trying to put braces on a kid who keeps snapping his jaw back or stretching the jaw. I would think the jaw movement he does would negate any benefit from the braces anyway....but that's a whole 'nuther story! HEHE! Anyway, I went off track but again wanted to thank you for posting here for us!

 

Bonnie

[Chemar]

My ds seems to have a lot of mouth and jaw tics and his orthodontist keeps pushing for braces but I keep holding off b/c of these tics. I can't imagine trying to put braces on a kid who keeps snapping his jaw back or stretching the jaw. I would think the jaw movement he does would negate any benefit from the braces

 

Bonnie

 

Bonnie I just wanted to give quick comment on this from our experience. My son tics more when he has metal contact. It is weird I know but a fact. At home he uses plastic utensils and avoids direct contact with metals where possible. they always trigger teeth/lip/jaw tics for him

 

our docs and dentists agreed it would be best to avoid any braces for him because of this tic trigger, even tho orthodontist was also pushing for them some years back. his teeth grew out just fine without them. I know they now have those non metal (i think) Invisalign braces

[lynsey]

Hi Bonnie

 

I am happy to help with whatever information I have gleaned over the last 12 years.

 

My boys had so many tics, at different times. They had a "hmm'ing" tic (making a hmm noise), eye

blinking tics of all manner, head jerking, grinding of teeth (I also declined orthodontia because of

that, and their teeth ended up just fine) shoulder shrugging, neck twisting....gee, I've forgotten a lot of

them. It's hard to quantify how the Clonodine helped the tics, but I believe it helped lessen their frequency

and severity. When I understood how clonodine works (see below), I could understand how it might

ameliorate the tics. But the best part of the clonodine was it eliminated my son's restlessness -

completely. He was a much happier boy when the restlessness was gone.

 

By the way, it helps different children to different extents, and depends on the dose. You can never know how it will help,

or even if it will help, until you try it. My friend's son had severe, severe tics, an his tics, but was hugely sedating

at that high dose, and also made him very crabby so she had to reduce the dose. My sons are on the lowest

dose available - .025 mg 3X daily.

 

I have never tried Bonnie's vitamins. I heard that Omega 3-6-9 was very beneficial to reducing tics so

I gave them that.

 

I can best explain it by quoting from the "Guide to the Diagnosis and Treatment of Tourette Syndrome" (Tourette Syndrome Association):

 

"Clonodine is an imidiazoline compound with alpha-adrenergic agonist activity. In low doses,

it "down-regulates" alpha-adrenergic neurons in the locus ceruleus, decreasing the release of

central norepinephrine. Since 1979 it has been considered to be of benefit for the treatment of

TS, although the response rate is lower than that of either haloperidol or pimozide. In general

it is of advantage because of the low incidence of side effects associated with it's use. Perhaps of

the greatest importance is that it does not have the potential of causing tardive dyskinesia.....

In addition to reducing the simple motor and phonic symptoms of TS, clonodine seems especially

useful in improving attentional problems, and ameliorating complex motor and phonic symptoms.....

The patient may experience a reduction in tension, a feeling of being calm, or a sense of having

a "long-fuse" before tics are reduced. A gradual decrease in complex motor tics and compulsions

also may precede clear improvement in simple tics....."

 

Hope this helps