I get a lot of emails from moms who are new to the tic phenomenon. They write that they are freaking out. They feel helpless, frustrated, sad and angry all at once. Been there, done that. Here's a snippet of an email I just wrote to a mom. I hope she'll comment here and that some of you will also. No matter how much your friends try to help, if they don't have a child with TS or tics, it's hard to really "get it". I'd like this to be an additional forum of support for you.

Here's my two cents: A few years back, when the ticking got kind of gross (eye rolls, shoulder shrugging, incessant coughing - oh, the coughing and throat clearing!) I thought I'd go NUTTY if I had to look or hear those buggers one more time. I also let those damn internet searches instill the fear of God in me. I worried that Stink would be an outcast - someone people made fun of. It broke my heart. I'd cry and cry and cry.

Finally I just decided one day to tell those fears to fuck off. The world is cruel to the most "normal" people. Why should I - his mother - his greatest advocate - not embrace him? Let the world do what they want. (And with a healthy dose of confidence, chances are they'll be just fine.)

What helped me get to this place is my diet game plan (see post below). Yes, I was lucky that through the kinesiologist I found the right food and supplements that really helped. Some aren't. But I also realized that in cooking for my son I was doing something. I couldn't completely stop the tics, but I could bake my love into his gluten free bread and buy pasta that was good for him. In not spending money on candy I could spend some cash on Disneyland passes and have FUN again. I was doing something positive, not just dwelling on fear.

My saving grace was the knowledge that that I was doing all I could. You'd think after all this baking and vitamin shopping I'd be upset if the tics come back, but honestly, I'm 50% less stressed now, because I know I've done what I can. And while I've suppressed 90% of the tics, like a bad boyfriend, they always return. Why? BECAUSE HE HAS TOURETTES.

More next Monday on dealing with spouses during the initial diagnosis/onset of tics.

More of my writing can be found daily at BabyCenter and Good Housekeeping.




 


Comments

Lyn

Mon, 17 Nov 2008 12:33:12

Andrea, that's a pretty good post. Really.

About your post for next Monday, "Dealing with spouses...", that'll be interesting. For me it was a case of almost totally ignoring everything else in the world while I tried to sort his tics out. Not good!!!!

But I think there's a certain amount of all that stuff that we all experience because it's normal. We go through the grief, anger etc... and finally acceptance. Yes, it does happen. That level of acceptance can appear to change from day to day, but it's still acceptance.

Looking forward to next weeks post,
Lyn.

 

Lyn

Mon, 17 Nov 2008 12:59:50

Just want to add something... if I had known that back when my son was diagnosed that everything would be ok I would've saved myself alot of heartache. Like you Andrea, I automatically assumed the very worst.

I think it's normal that we each have to go through that horrible part before we can accept it. But I would like to let others know that you will get through it.

One thing that really helped me was when I read a story someone had written, she mentioned how her child was diagnosed 10 yrs earlier and she spent so much of those years totally stressing out, waiting for the bad things to happen... and they never did. She now sees those years as "lost" because she can't get them back. She wrote how she wishes she could go back with the knowledge she has now and just enjoy her son growing up... because she feels she missed it all from stressing about something that was never going to happen.

Just thought I'd add that, because reading her story helped me so much. It woke me up to the fact that i was spending so much time worrying, meanwhile my little boy was growing, doing new things but all I could see were his tics. Now that I see things differently I don't notice his few tics anywhere near as much.

Hope this may help someone...
Lyn.

 

Jenn

Mon, 24 Nov 2008 08:37:38

I am the mom you are talking about. My daughter just turned one and I am the one freaking out. She does the twitches, head nods, head the chest. It sometimes seems like it is gone and others it is obvious. I am currently living my life in anxiety. Now, this has been happening for 3 weeks or so and my husband thinks I am crazy. I am not crazy. She is doing this and no one wants to think it is serious except for me. We did an EEG and it came back negative which I know doesn't really tell me much. I basically have to watch her for a year before she is diagnosed, right? Any help, suggestions, diet, anything would be so refreshing.

 

andrea frazer

Mon, 24 Nov 2008 11:55:52

Jenn -

I said it before and I am so serious about this - get her to a homeopath asap to get her blood tested. Find out what her antibodies reactuibs are. Once you have a list of what is good and not good for her, you can then move on to supplements. You are lucky in that she is only one year. she won't know gluten free pizza from anything else. Your diet does not have to be expensive. Kids all over the world live on beans and rice just fine. You have to make conscoius changes and you'll see some improvements. When do you think you can see the homeopath? If you're not going to, what is your next plan? If money is an issue, what can you do via Ebay or part time work to get it taken care of?

I am sounding ballsy, but since this is my blog (hee hee... not BabyCenter or my other one) I can be more direct. I hope you take this with the support it is meant. Now is the time to take action. We spend more money on less important things. I'd give up coffee and all the shopping in the world to get to the root of my son's tics. I have a feeling you are the same which is why I'm suggesting it. (And honestly, once you get over this first hump, it's more smoothe sailing.)

 

carrie

Wed, 26 Nov 2008 08:49:39

a nurse just told me the other day that some tics are from vitamin deficiencies.

 

Jenn

Mon, 01 Dec 2008 12:07:08

Andrea

You are right and I am going to look into it and the cost. Money is always an issue but of course I would do anything for my child. She is my life. In the meantime, I have called my Dr. because I am pretty sure I need some help to get through this as well in order to be strong for her.

 

Ingrid

Thu, 04 Dec 2008 03:48:14

WOW!
Huge sigh of relief....I have been on hundreds of sites trying to make sense of my 6 year old daughter's tics (she will eye roll over 100 times in an hour). The only thing I got out of it was total fear and confusion. I couldn't figure out where to start. One thing I did learn is that if tics stop for over 3 months, it isn't likely to be TS. Another thing I learned is that chronic or transient tics don't sound much different than a mild form of TS. Thanks so much for giving me some direction. I am going to get her blood tested ASAP! It s so nice to know our family's not alone.

 

andrea frazer

Thu, 04 Dec 2008 08:57:17

Ingrid - Your family is not alone! Get that blood tested and see if food and vitamin supplements can help. I bet they will by a big % and then it's up to you to really cook the stuff she needs, even at parties. I'll do a post on that. Go Ingrid!

 

Ingrid

Fri, 05 Dec 2008 17:00:43

Thanks Andrea,
I just keep praying that she'll wake up and the tics will be gone forever. Today she is turning her head side to side as she rolls her eyes to the opposite side. We rarely watch TV but did tonight and it got really bad. I'm thinking TV and computers may be a trigger. UGH!! It's a good thing she's not a big fan of TV. When she is concentrating on something, like a craft or reading a book, she barely tics.

Her ped is on vacation for the month of December but I took an appointment with the covering doc. Hopefully he will give me a referral for allergy testing. My friends son had a "burping" tic and it just went away one day. That was over 18 months ago. People keep telling me that kids just go through weird phases and that it will probably disappear. I would love to believe that but something in my gut tells me it's something more. I wish I could find some more in depth statistics on tics. Taryn has no issue with ADD or any learning disabilities (I've readd that there is a correlation b/t ADHD and TS). As a matter of fact, we had her tested for giftedness and she tested as high genius (148). Maybe she needs more stimulation or something. ????????? I'm screaming inside my head right now. Patience is not one of my strongest qualities and this sure is a waiting game. I just keep letting her know that she is wonderful and that every human has "something" to deal with.

Thanks for letting me vent!!

 

andrea frazer

Sat, 06 Dec 2008 16:57:40

Hi - Well, if it's any consolation, kids with TS tend to be very intelligent and artistic. It is the case with my son for sure. (Yes, everyone thinks their kid is smart, but Stink was so verbal even at 2. And he thinks very outside the box for a 5 year old, not to mention very very empathetic.) I sometimes think with TS kids they tic a bit due to being sensitive emotinally and intellectually as well as physically. It's no scientific approach, of course, but a mom knows!

Regarding ADHD, my son does not have that, nor OCD, but he's still young. I give all that time and don't worry too much anymore.

It's hard to see when you're going through this, Ingrid, but a child that tics is not that bad if you can really work on looking past it. If you can't change the tics (and I still think you can with the right diet) then you can make sure that you of all people are 100% loving and strong around her. Don't let the tics keep you from encouraging her to do whatever she wants. Your goal can be to have her be the best artist she can. Oh, and she tics. By staying strong, she wont' be the kid who tics and then, by the way, is an artist. (or whatever she's good at.)

I saw an amazing movie the other day on TS and it really puts things in perspective. Check out my post later tonight or tomorrow.

 

Paula Lee

Wed, 02 Dec 2009 09:48:43

I have learned so much on your site. Thanks! www.bakeitbeautiful.weebly.com

 



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