Chronic eye blinking tic.

[jcandkc]

Hi everyone:

 

My daughter has a chronic eye blinking tic. She started to blink her eyes really hard since November 2003. It started out as a right eye wink then became both eyes blinking. She started out constantly winking and esculated to blinking every second for hours. I felt she was practically 1/2 blind. That episode lasted 2 days. Now we are in our 11th week and she is still blinking. The frequency varies all the time. One day it can be a really bad day of blinking and yet another day it is better (but hard eye blinking still there). Then there are days where that particular day has both frequent and infrequent eye blinkings.

 

So far, we just have the chronic eye blinking tic.

 

I am so scared of this blinking thing. This is all so new to me. I tried to blink every second for just one minute and could not functionally read! I am so afraid for my daughter's future. Do the frequent blinking just occur for a short duration of time (few hours to a few days) and will lesson in intensity thereafter? I hope so. That way she can get a break to 'catch up' and do her school work. Or are some frequent eye blinking 24/7 days a week? Can that happen?

 

Oh... I am having problems dealing with social stigmatism. How do you deal with stares, questions, etc... I'm embarassed to say, but when my daughter has bad eye blinking tics, I hide them behind sunglasses. I guess I'm afraid someone will say something to make my outgoing happy child uncomfortable. She doesn't know she is doing anything unusual. I'm sure I can't protect her forever. But when I can, I will try. I can't help it. I love her too much.

 

I feel so alone with this problem. Everywhere we go, I see healthy kids. No one has our problem. It is a sad sad feeling.

 

Thank you.

[Guest Guest_efgh]

Hi

 

Eye blinking tics can be transient too. Many kids get transiet tics and they sometimes outgrow.

How old is your daughter? Does any one else in your family have tics or TS or any associated problem like OCD/ADHD etc? Was she a full term baby or prematured??

what did your doctor say?

There is every possibility for you to be hopeful and confident.

 

Goodluck.

[Guest Jean]

Hi,

 

Welcome to the forum. You are not alone. I have also experienced the exactly same feeling that you have (although my son has different symptoms). It's hard to see our kids act differently from other kids and things are out of our control (sometimes even can't get professional help). I don’t have much experience as I’m still learning and trying to understand more for this matter. I would suggest to start from the food, i.e., eliminating artificial stuffs, etc., because it won’t be harmful anyway. Information posted in this forum is very helpful. You may also want to find if there are triggers (i.e., computer, TV, etc.) to make her blinking worse. Meanwhile, having your doctor to check if there is no vision problem (or it’s just a tic). As EFGH mentioned, some tics can be transient. One thing is important that I learned. You need to ignore her, and don’t let your kid feel your sadness. In my case, my emotional change really affected my son. Hanging there…

 

Love,

 

Jean

[jcandkc]

Hi Efgh and Jean - thanks for replying.

 

My daughter will be 5 years old this month. She had a one eye winking problem when she was just 2 1/2 years old. It was triggered by a film shown in the library. It was an off and on switch directly connected to the film. If the film was shown, she'd start the right eye winking. After the film, she'd stop winking after 1 hour exactly. That bout lasted only 2 weeks. We tested her again and again. It was like switching a light switch. The correlation was startling. There was no room for guessing. It was black and white. Even the optometrist said he had never seen any child do what he just witnessed in all his years of practice. He said he had seen tens of thousands of kids. After elimination of TV, it went away. During that time we thought what caused her one eye blinking was lazy eyes or astigmatism. We never suspected that it was a tic. So we thought to let time heal her eyes. After 1 year, we let her watch TV again. Well she didn't watch long before problems arose again. This time she developed a left eye winking problem (opposite eye). That bout lasted 2 weeks to end with both eyes blinking. Subsequently after these 2 episodes, we just felt that my daughter had weak eyes (lazy eyes) and didn't deal well with the stress/strain of TV/computers. TV/computers were banned for her. Unfortunately, she started her preschool had a old computer. So when she was forbidden the TV/computers she starred at it every opportunity she got. She started the one eye winking soon after. That was November, 2003. Unfortunately this time, it did not go away. Instead it esculated into both eyes blinking every day. The frequency varied between days and even hours. For the first time ever, she started to blink at high frequency (30+ blinks per minute) for hours. This really scared me to death. We are almost on our 3rd month of ticcing. I still cry. I don't cry in front of her. I am usually very strong during the day (or try to be). I keep myself busy and don't think too much. It is at night, after she is tucked into bed, that I cry. I pray. I even asked god to let us exchange eyes. My husband will love me any way. But with my daughter, social peers are so important to her. Will she have difficulty finding a boyfriend/husband to love her b/c of her eye problems??

 

I took her to optometrists, opthomologist (pediatrics, surgeons and teaching staff) and a very nice neurologist. Depending on whom you spoke to, you'd get different diagnosis. No one was 100% sure. Our neurologists said that many kids have eye blinking tics. From my daughter's history, our neurologists says she doesn't have transient motor tics (no signs yet) and that currently she has chronic motor tic. She said not to stress about it and that most kids get better with time. She said if her eye blinking problem interfers with school work, we could give her some medication. But that most children's tics are minor and never require medication. She also stated that if my daughter still has this chronic eye blinking that she could get botox injections when she is much older. It is quite painful but effective. She said she didn't think my daughter will need to do this since she will most likely outgrow this problem. She was very calming to talk to. She made her eye blinking tic feel like no big deal. That everything will be fine. I wish the public was like her. But atlas they are not. They stare, question and judge.

 

As for family history. Well... that is hard to say. I don't know much about my medical history. My parents divorced when I was 3. My mother never allowed me to know my father or his relatives. As such, I don't know what their medical history is. On my mother's side, I have a 1/2 brother whom I might suspect of having either transient tics or mild TS. I am much much older than he is. However, I don't EVER remember him doing anything repetitive or anything strange. He said he did but I never saw them. If he did have transient tics or mild TS, it was so minor that it never interfered with anything. He definitely never ticced to a point where everyone noticed. Lucky him. To date, he looks 100% normal. He says he doesn't do anything now. He said our mother said he had tics but he doesn't think he did. Go figure. My sister said he had compulsions to do things. Once he did it, it was over. He didn't tic. And he definitely didn't have TS. That is what they told me. So I really don't know what he had.

 

My daughter does not have ADHD or OCD. Thank god for small stuff.

 

I will try vitamin supplements. Thanks for the advice. I will continue to read the threads. I will definitely try to eliminate all the artificial stuff: food colors, MSG, etc.... We currently don't watch TV/computers. I'm not sure why her ticcing won't go away like the prior years before. I've read that ticcing esculates till they are 9 or 10. I'm so scared of this. At 4 they are bad enough. Trust me, they are really really bad. I don't even want to imagine what it will be like when she is 9 or 10.

 

Trying to hang in there. Thank you for the support.

[Marretts]

To JKCANC

 

IF YOU GO TO www.braintalk.org and into Tourettes there is much info regarding eye blinking and that it could be a B1 deficiency if you do a search in the forum and put eye blinking FJ* is very knowledgeable about it. Regards. I have only just stopped crying a few weeks ago and now on the journey of knowledge, trying to find the triggers and treating with vitamins/minerals, so far a bit of success but still some ticcing. Still hopeful I think these things are immune related, so build the immune and hope. Good Luck

[BiNa]

JCANDKC,

Hey, what's up???? I'm a 20 year old junior at Miami University of Ohio and have had Tourettes since I was about 4 or so. I have blinked my eyes almost constantly since then. It is by far my worst tic of all of them. I have gone through the age of being stared at and talked about that your daughter is probably going through now, and I'll admit, it was not easy to do. Making up excuses every few seconds on why I blink so much only works for so long. I still to this day, at almost 21 years old, blink ALL the time, especially when I am in a room by myself. I have never taken any medication (I have OCD too) and am just now considering doing so, but for the OCD. The tics will change, some might not ever go away, some will, but then there will be something new, just one day, you'll notice a completely new thing. I still do notice new things I do. I don't know if this goes for other people who have Tourettes, but in my experiences, don't ask your daughter "do you do this????", as in some sort of tic that you know of that you want to know if she does. If I didn't do it before someone asked me, I would start doing it, so I tell people not to ask me if I do specific things. I know being 9 is a hard age to go through having something such as this, but the best way I have found to get through it is to not be embarrassed of it, but to accept it and think of it as a certain uniqueness. Every single person now who I see stare at me, or who I know has just seen me make some strange face, I will go over to them and be like "I have Tourettes, that's why I was doing that." If they need a reason, then just give it to them. I figure the more people who are educated about it, the better. If you have any other questions or comments for someone who has lived his life through all of this firsthand, please feel free to post or email me. brian_golde@hotmail.com Thanks and good luck.

[Guest Guest_jcandkc]

Hi BiNa:

 

Thank you for sharing your experience with me. I was extremely touched by your courage, honesty and candor. I definitely feel in your pain. I also think it is so wonderful that you can tell complete strangers you have TS. It is nice that you are willing to educate the world. The world will be a better place with more education .

 

Yes, the eye blinking thing is such a hard thing. My heart breaks when she does it. I try to remember that it causes no pain. However, it is still difficult to see someone you love suffer so.

 

Right now she is in the waning cycle. The blinking just stopped last week. I am thrilled that it is gone. She was blinking (various rates) for 3 straight months - she has never done that before. I am forever fearful it will be back again. I guess I will have to deal with it if it comes back. I know the statistics say that tics get worst at age 9-10. She is only 5. I can't imagine it getting worst. It is bad enough.

 

Do you ever get headaches, dizziness or have a hard time focusing on reading/studying? I hope not. If you do, than this is another thing for me to worry about.

 

I have eliminated MSG in her diet. I have also increased eating more nutritiously. I make it a point to give her orange juice. I'm not sure if this helps her eye blinking for sure. All I know is that it 'might' help. If not, at least it is nutritious. I also give her daily vitamins. I have not given her higher doses of B1 and B2. I will have to go and purchase the right ones. Many people at braintalk have mentioned that it helped them (their children).

 

Keeping my fingers crossed that both you and my daughter will have better and better days.

[Chemar]

HI

My son is now 14 and his very first tic was eye blinking....from preK years and long before we knew he had TS (diagnosed at 10yo)

 

he also used to roll his eyes.

 

The supplements have helped him greatly.

 

My very sincerest advice to you is to try not to worry and fret......the nature of TS is such that tics come and go and get better and then seem to get worse......but worrying doesnt change a thing......it only makes things harder to cope with.

 

There are NOT always triggers for tics, although some things clearly do trigger them....but you cant always find the exact cause for them as they are, in a person with TS, a part of their neurological makeup.

 

We have found that attempting to keep a healthy diet and eliminating artificial foods and those that we have identified as triggers, as well as avoiding other environmental etc situations (eg dust, mold, chlorine and strong chemicals, pesticides, perfumes etc)......and by using the supplement programs that are recommended for TS.....all this has helped my son go from a VERY severe case of TS to an extremely mild one.....BUT, he does still have TS, and he still has mild tics every day and we have all just learned to accept them and it really has made life easier!

 

Like BiNa, my son is proactive and tells people upfront about his TS and it has helped him make and sustain good friendships and relationships with others.

 

 

My very warmest thoughts and heartfelt prayers are with you as you walk this path....be encouraged...things do generally get better with time and living with tics is not insurmountable....

TS people are amongst the warmest and most talented on this earth!

[BiNa]

Hey again,

You asked if I ever had trouble concentrating because of the letter counting, with reading or anything. Well the truth is, yeah, it made it really hard to read. I just recently finished the first book I have ever read for pleasure in my whole life. I only read before when I had to, and sometimes not even then. It makes things hard, but again, it's just a speedbump in my life. It's not that I don't like reading, it's that I just can't understand what I've read after I do it because my mind was doing too many things. If I'm concentrating really hard and I'm into what I'm reading, then sometimes the counting isn't there at all, but as soon as my concentration gets broken or I realize "Hey, I'm not counting", it all starts back up again. I can't say much more right now, I have an exam to get to, but feel free to ask anything else that comes to mind. Thanks.

[BiNa]

I forgot to answer one of your questions in my previous post. Oddly enough, I have never had a headache in my entire life, I don't even know what they feel like, and I do not recall any time I have gotten dizzy. The eye blinking is just annoying, it doesn't hurt or anything, just very frustrating and mentally draining.

[Guest Jeff]

JCANDKC,

So sorry to hear about your child's eye-blinking tic. I know how heart-breaking it can be to see your child having to deal with tics. I watched my daughter going through that when she was in first and second grade. It was horrible. But, for our family (myself and two daughters - my wife is not affected), the tics are no longer an issue (oldest is 11 now, and youngest is 9). We still tic sometimes, but we have found a way to keep them at a very mild level. Perhaps you have read some of my messages on this board - we have had great success by eliminating artificial colors and flavors from our diet. We follow the Feingold Program (www.feingold.org), and it has been a life-saver for us. If we stick to the diet, our tics are very mild; when we deviate too much, we see the tics return. But we know we can get back on track if we clean ourselves out again. The program is not easy, especially at first, but for us, and for many other families, it is worth the "sacrifices" and the effort. We have our children back again, and they don't have to deal with the social burdens that come with the tics.

Besides the flavors, colors, and certain preservatives, the Feingold program also eliminates foods that are high in salicylates (ex: tomatoes, oranges, berries, apples, etc.). Many people react to these, even though they are natural. These can be re-introduced later, one at a time, watching for reactions. When you mentioned the orange juice, I immediately thought of salicylates. It might be that your child does not react to those, but, for us it is something to use in moderation. In fact, it might be that your child is not reacting to any of these items that are eliminated on the FG program; however, many children do, and it certainly might be worth a try. As with Chemar, we went from severe ticcing to very mild ticcing, and I attribute that completely to eliminating those things from our diet. I also want to try supplements, such as Omega 3 EFA, but haven't gone their yet.

I could go on and on about the FG program. If you decide you want to give it a try, I can tell you that the first-year membership fee is about $75. Subsequent years are about $45. For these very minimal fees, you get a large reference manual of very useful information; in addition, every year you get an updated Food Guide, which lists thousands of specific brand-name products that have been researched and approved by FG volunteers. This make shopping a lot easier!! You also get access to the Members Bulletin Board, where members actively share their stories, new food discoveries, and collective wisdom. The program can be overwhelming at first as you find that you need to replace many of the foods that you have always thought were healthy (and probably are in many ways). But, after you get through the first couple of months, you establish a new shopping list, and a new mind set, and it's not as difficult. If it helps the ticcing, then you will never regret it.

Like I said, I could go on forever, but I feel like I'm rambling right now. So, if you're interested in hearing more about this, let me know, and I'll be happy to share whatever I can. But I really do hope you'll give it a try. For some families, it can take up to 6 weeks before they see the results - it's almost like the body has to go through a "de-tox"; but then it's like night and day, and the differences are remarkable. In our case, we saw results after 3-4 weeks of being on the program. Before FG, our little angel had constant facial ticcing (nose scrunching, mouth opening) and, when on our laps for reading books at night, her body was in constant motion, twisting and clenching all over. Since starting FG, the facial tics are almost non-existent, and she can sit on our laps still as a rock.

I hope this gives you a little hope that there might be something you can do to help without trying the medicines.

Sincerely, Jeff

[Marretts]

Hi Jeff,

 

I just posted a new topic about food sensitivities then I saw your response here, I have seen your previous posts and thought I was dealing more with heavy metals and yeast however now I wonder, my son came back with mild sens. to Avocado, Grapes, oranges (not lemons) rockmelons, strawberries, broccoli, cane sugar, aspartame, cows milk, corn, sunflower, wheat and wheat gluten and bakers/brewers yeast. plus several food additives. Does this sound like salicitys to you (or however its spelt). I will check out the feingold diet site, hopefully it will work for us. so far the supplements are working well but not quite there yet. thanks for posting all this info is invaluable.

[Guest Jeff]

Hi Marretts, Some of those foods are high in salicylates, such as the grapes, strawberries, and oranges. Many people are sensitive to corn (especially "corn syrup", which comes under many names), and some have found big differences in their children if they go gluten free and casein free. And many are allergic to cow's milk. I hope you dont' have to eliminate ALL those things, or there won't be much left to eat!! But you said they were "mild" sensitivities, so maybe they are not an issue. We have only had to eliminate the artificials, the preservatives BHA, BHT, and TBHQ, and limit ourselves on the salicylates. We also try to eliminate corn syrup, as that causes adverse behavior in our younger daughter, but that stuff is in SO MANY foods, that we have found it very difficult to totally eliminate.

If you start the FG diet, one thing that you will do at the beginning is keep a food diary of everything your child eats every day, and their behavior or tic level throughout the day. You will need to do this for several weeks so that you can start to see patterns. Even after you've been on FG for years, the food diary can still be a useful tool when you have mystery reactions.

Jeff

[Marretts]

thanks Jeff,

 

I have looked up the feingold diet so will try to stick with that its confusing over the yeast thing. I looked yesterday and couldn't find any decent bread thats not as hard as a brick thats gluten/yeast and wheat free.

[monkeygirl]

Hi -- my first post!

 

I'm a woman, 42, and have been chronically "blinking" since about 4th grade. FOREVER!!! My tics were the worst when I was a kid, they mellowed a bit once I hit college age -- but never went away. I had lots of other tics, but the blinking remains the most obvious.

 

It's embarrassing, yes.... people mock you, mimic your blinking, if they're particularly insensitive. If I don't want to be bothered, I just tell people my contacts are dry. But often it's best just to look right at them with a big smile, and say "I have Tourette's Syndrome". At least people know what it is now! It's almost glamorous....

 

My worst memory: my mother, god bless her, telling me to "stop doing that!!!" or "You're just doing that to bug me". I wasn't diagnosed properly until 10th grade, and until that time 8 different doctors ran tests on me and came to the conclusion that I was emotionally disturbed. So she was at her wit's end, I guess. But, try as I could, I just couldn't stop "ticcing" for long.

 

I now have a 4-year-old that I'm watching for any signs of tics. If she starts, I want to be SURE to help her to feel like it's no big deal -- make jokes with her about it. Because, honestly, it's NOT cancer; it's annoying, painful sometimes, socially challenging -- but not terminal. Please remember that, and don't make too big a deal out of it. It was harder for me to watch my mother suffer the embarrassment over my tics than it was to actually have Tourettes.

 

In the Tourette's Syndrome group therapy program at UCLA in the late 1970's they used to tell me I was the "one with the cute little wink". I liked that. Please -- the best gift you can give your daughter is to not make it a big dea. Be there for her when she needs to cry about it, but also be there to laugh with her.