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Is this TS or just a passing tic?


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I don't know what to do. About 6 months ago, my 9 year old son started eye twitching. It was rapid some days and included nose twitching and/or a facial type of tic where he would scrunch up his cheek. Some days it was bad, other days it was very minor. We found out 3 months ago that he supposedly had a milk allergy and took him off of all milk products as he was always complaining of stomach aches. He now barely complains of his stomach hurting anymore and the tics are not as bad. He still has eye twitching, more on one eye than both. I've noticed that he will once in a while open his mouth like he is going to yawn and stops before he completes the yawn, as if it was only a fake yawn. There is no family members with TS and everyone thinks he is just "going through a phase". He does get worse when he is dealing with stress...his little face seems to go non-stop until the stress is calmed. I am hoping this is one of those tics that is here for a while and will be on it's way down the raod, never to be seen again. I just found this site this evening and, after reading everything about the tics and allergies, could this all be related with TS having little to do with it? This is quite confusing. If it could be related to food allergies, what do I do next? He had blood work done for allergies and it came back negatie but they still suggested taking him off of dairy products which has worked great. We are currently without any health insurance as my husband was just laid off so I can't take him anywhere right now. I will take any and all suggestions you all can give. You are seem to know what you are talking about. I basically want to know if this sounds like TS and if the tics that started 6 months ago could be related to the stoppage of dairy 3 months ago somehow and if so, what do I do? Thanks sooooooooo much!!

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Hello The7roses and welcome :( What a nice screen name!

 

I cant post long as I am in a hurry, but just wanted to tell you that, in order to get a diagnosis of TS, there needs to be BOTH motor tics and vocal ones. It doesnt seem like your son has any vocal tics yet?

 

I sure know what it is like to try to function with something like this and not have health insurance!

 

In the meantime I would suggest that you follow the basic protocol of trying to eliminate anything that could be a trigger for your son by starting with artificial foodstuffs like coloring, sweeteners like Aspartame(NutraSweet) and Splenda etc, also MSG, and preservatives and high fructose corn syrup. Those seem to universally be tic triggers. Also try to give him a good pure daily multivitamin(without coloring added!) and maybe some extra calcium/magnesium/zinc combination (ask the pharmacist for an age appropriate dose on or give half the adult dose) and also a good Omega complex (preferably a blended one that has more than just fishoil...some kids tic more with just fish oil)

 

Take a look at this article on tic triggers from Dr Rogers here at Latitudes/ACN and see if any of these may be setting your son's tics off

http://latitudes.org/articles/finding_triggers.htm

 

and in reading the many useful posts here, you will notice how many of us have found ways to help reduce tics.

 

Do stay in touch here as there are so many experiences and great info to learn from

 

gotta go now so bye!

Cheri

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Oh...I am so scared about this. Of course I will do ANYTHING for him. I have read so much on the Internet about just tics - no assiciation with TS - and I am hopeful this is only what it is, just a tic in passing. SO many sites say it is so common for children to have just that. But, in the meantime, I am just mortified of TS, too. Could it be?? How long do I play the waiting game to see if anything else developes? He also has a anxiety disorder called Selective Mutism, which is mainly predominant in the school setting. He will become mute around people he does not know or in any type of social setting. We have pretty much mastered this. He has done so well in school this year and is so aware that he is a tad "different" in school. I just can't bear adding anything like tics to what he already has to deal with. How are children expected to deal with everything they are given in life? My heart is so heavy with a new worry for him. As I type this,, I am cryng because I am so scared. Can someone outline what the beginning, middle and final stages of TS is? If he is now experiencing eye ticks and minor facial ticks, how long before the next "thing" happens in TS. Since I can't go to a doctor at this time, I need you all to guide me. If he does have TS, will he end up with no control of his arms, legs and other body movements? That is enough to make a person suicidal, isn't it, especially a child. Are there different degrees of TS? If it is going to be the type with no control of arms and legs, does it start out worse than just eye twitching? I thank any and all of you who will help me through this. I am just falling apaprt of the thought.....

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Dear Roses

 

I just wanted to pop back in here and try to encourage you.....what your son has are very possibly "transient tics" that will pass, especially if they are being triggered by something simple like allergy, illness(strep causes something called PANDAs induced tics...) or even the TV/Computer screen trigger that some here have found ........

 

however

 

even if it IS Tourette Syndrome....that is not nearly as bad as you seem to be imagining!

 

My son is 14 and has TS, and my husband is 57 and also has it.

 

With my husband, his tics are barely noticeable(a few facial "expressions")

and my son has gone from severe ticcing when it first started 4 years ago to very mild, even when they are "up"....thanks to the natural treatments we have been following for him

 

Usually, TS is inherited, so there will be someone else in the family lines of you or his dad that have TS in some form or other.

 

I am not sure where you have the idea from that people who have TS have no control over their bodies? That is extremely rare! and if it is from the TV stories about that guy who had the brain implant to help........rest assured, his extreme problems with TS are the exception not the norm!

 

People with TS do struggle with tics that come and go, and they are both movements and sounds.....but they do just that.....they come and go and no one tic stays "forever".....also, people with TS mostly can and do control their tics when they HAVE to....they just eventually also have to let them out as it is like a build up of pressure in them until the tics are released.

 

Usually, the years around 10-12 are the ones where TS seems to be at its strongest. Most often, when the teenage years progress, it begins to decrease and many adult people with TS have it so very mildly that you probably wouldnt know unless they told you. There is no "final" stage....TS is NOT a degenerative condition....it doesnt get "worse" if anything, it gets better with time!

(Especially if those who have it are having a healthy diet, with good vitamins and other supplements, and moderate excercise, staying away from heavy chemicals like pesticides and stuff and other things that were on that trigger list I linked you to in my first post.)

 

The world is FULL of very happy and successful people who also have TS.....MOZART had it!!!!

There are TS doctors, nurses, psychiatrists, psychologists, lawyers, teachers, professors, actors, musicians, artists, sports stars, clergy and a whole array of folks including wonderful parents who have it too and still manage to have successful careers and loving families.

 

So please dont think that TS is the end of the life....for some, it is the beginning of a whole new and very rewarding life! My son, although only 14, has achieved and accomplished some amazing things BECAUSE he has TS, and he actually sees it as a blessing from God as it has opened up some wonderful opportunities for him!

 

 

I have moved up a thread here called "Encouragement" which contains a quote by someone who lives with TS and it really has a very balanced view, so i hope you will read it.

 

In the meantime, if I can leave you with advice that I have gained through our experience.......DONT WORRY! it doesnt make anything better...and usually only makes things worse!!

Things are usually never as bad as we imagine, and there are multitudes of stories of people with TS or just transient tics that are filled with hope and success and encouragement.

 

DO stay in touch here and feel free to vent your feelings because that is VERY important for you and your child...we are here not only to share our experience but to give you all the love and support that we can......and to help you realise that you are not alone in this situation....you have all of us who understand because we have felt just like you do....but we can hold out a beacon of light for you and tell you that it CAN and usually DOES get better :(

 

ps sniffing alone is not necessarily classified as a vocal tic....it is usually accompanied by throat clearing or coughing when it is vocal.

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Chemar,

 

what a wonderful post. I am simply touched by the contents and the warm thoughts. Keep up your good work!

 

Roses, I don't have anything more to say since Chemar has described it beautifully. One thing for sure that I can say is - please take it by the day , don't even worry about the future. I have come to that stage now AFTER A LONG brooding session for one year.

 

Does TS run in your family - do you know of any of your close relatives (or your husband's relatives ) that has it?

 

goodluck and keep in touch.

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7Rose,

 

Since you are this deeply upset, it might be worth it for you to try eliminating "Screens" for a week (e.g. TV/Computer/Gameboy/Movies). That has made a major difference for 4 of us here, and for my son actually eliminated his tics.

 

Honestly, if you have no medical insurance, this is a very quick and harmless test. If you spend quality time with your child during the normal TV time (outdoor activities or board games--take him to an amusement park), it doesn't have to be traumatic for him to try this out and could bring his tics to a minor or non-existent level.

 

I cannot tell you the joy I felt when I discovered this was what eliminated my child's tics. What a pleasure to see his little face so peaceful again. I would love that face no matter what, our pain is for them.

 

We have other threads on this trigger that you can scan through, but the biggest 'test' is absolutely no screen viewing for one week. You should have an excellent idea by the end of that week.

 

Also, I encourage you to read the success stories here, there is lots of room to minimize severity of tics, even for those with TS. For example, Chemar put a thread on Pyrollia, where there is a cheap test that you don't even need a doctor to order. If it is Pyrollia, the solution is an easy supplement progralm

 

God bless you and your child, and good luck.

 

Claire

 

ps, here is a post from another board that summarizes my view on TV.

 

Hi all,

 

...3 other Latitude regulars have tried either eliminating TV or both TV and computer, with such a substantial reduction in tics that they are all continuing with various degrees of restriction or experimentation for tolerance.

 

Their anecdotal stories reinforced my own findings for my son that this particular tic trigger lasted beyond the duration of the viewing and ultimately appeared as 'chronic' because of the ongoing exposure to screens.

 

One poster never even really noticed any worsening of tics during screen time until their school instituted a 'no-screens' week and her child signed up. For anyone interested in finding out more, you can ask them questions (I am taking a posting break for a month due to work).

 

This is in direct contrast to a common line of thinking that "kids tic during TV because they are relaxed".

 

2 other posters not on this thread below said that the TV trigger seemed to go away once their child's system in balance. My son has mercury/yeast/food sensitivity issues that once treated will hopefully reduce his own sensitivity here.

 

For those newcomers who don't know me or never saw my posts on this matter, my son was having multiple motor tics over 2 years ago (never vocal tics, and no TS). Eliminating screen viewing eliminated his tics 100%--literally. He now does watch TV on a small LCD screen across the room occasionally, and does computer work as needed for school, all on an LCD monitor--and is still tic-free.

 

Most computer games/game boys have warnings on tics--but they are only discussed in the context of Photosentisive epilepsy, which affects 1 in 4000, or 0.025% of the population that get seizures from light flicker (TV/Computer CRT monitors have a 60hz flicker, plus the games themselves can flicker), while 8% of the non-epileptic population has an abnormal brain reaction to flicker. In other words, photosensitive epilepsy is not the defining case for flicker, as only 3% of those with a reaction to the flicker actually have an epileptic reaction. Others can get migraines, and my belief is that others get tics. Even so, the warnings on the games say, "if you see your child experiencing tics during the game, stop."

 

Not everyone with tics is sensitive to flicker/screen viewing, and not everyone who is sensitive to screen viewing gets tics. But somewhere in there, some children are suffering tics needlessly. Think about it, until 10-15 years ago, we have never had a generation of children with developing brains sit in close proximately to a screen (e.g. computers) virtually daily. Even for TV's, the screens are much bigger now.

 

I personally think that knowing what is a trigger for you child can only help. If I hadn't already gone through this myself for my son, I would be working with his school to set up a no-screen week to test it out without causing emotional upheaval. Then I would do as I did back then, if I found a correlation, I would get a 15" LCD monitor and see what he could tolerate.

 

I do not believe that changing a child's screen viewing habits is a 'cure' in an of itself for underlying conditions. But for many, I believe strongly that it will reduce symptoms substantially enough to can make your child much more comfortable and ease social pressures (depending on age) as you seek to correct other issues, be they pyrollia, yeast, heavy metals, food sensisitivities, vitamin deficiencies. This is what we are doing with our son.

 

So here is the link with others successes in this area. Though still not scientific proof by any stretch, I hope this gives more credibility to the potential for this and encourage others who have not yet solved their child's issues to consider this possibility. Please feel free to post questions there and I am sure they will be happy to answer them. I myself am taking a posting break for a month due to work pressures, so I won't be able to respond here.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=551

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Oh. you all......as I sit here and read your posts, I cried AGAIN! Yes, I am a worry-wort of a Mother. I did not sleep last night worrying about what might be on these posts today. As I came onto this site today, my stomach was full of knots wondering what is was I would read. God Bless ALL of you for your kind words and your knowledge! I am feeling some relief as I read your caring words. Thank you from the bottom of my heart. The best thing I could have done for MYSELF was to open the door to your web site. I can see some light at the end of the tunnel, whereas last night, I was in total darkness. I feel honored to have "met" you all. In response to your questions, as far as I know, no one on my side or my husbands side of the family has ever had TS. I have not seen my father since I was a baby so I have no idea about his side. Does TS have to be inherited? And yes...I watched the show about the guy who had the brain surgery and that is what got me started. My husband also worked with a man who has TS and he said he would bark, jerk, make sounds all the time, and have constant twitching. He said it was sad to see him suffer so but he rarely missed work because of it! I have been my son's advocate for the past 5 years with the Selective Mutism and have seen how hard it is to get things done for a child who has a need for that extra push. It has been a tough road for him already and the thought of something new consuming his life on top of this just tears me down. I watch him out of the corner of my eye and my heart breaks to see his handsome little face so contorted at times. I have read some horrid sites on the Internet talking about the worst of the worst cases of TS. I always seem to end up on those sites. Thank you all for setting me straight that TS is not as devasting as what I have read. I felt like I was suffocating under the fear of what was behind this door. Now, I can breathe a bit better thanks to you all. We are going to try the TV bit and see what happens. He doesn't want to miss computer lab in school so we will start next week for the 7 days. What kind of vitamins, and what brands, do you suggest? I read so many posts last night and starting writing things down and ended up with a huge list. Since money is tight now, what would be the "cream of the crop" vitamins and oils to try first? Gosh, I can't wait to get back on and see what wonderful ideas and thoughts you have left for me. Thank you so very, very much!

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Good girl 7Roses...... :D

 

The cream of the supplement crop would be to start with a good MULTIVITAMIN+MINERALS that doesnt have any added coloring in it. I am not sure where you live so cant recommend brands as I dont know what is available to you. It is good if it has high B VITAMINS in it, especially Vit B6

 

People who tic also benefit from having extra calcium, magnesium and zinc and you can usually get that in a single capsule...it is usually in the miligram (mg)ratio of 800Cal:400Mag:50zinc

 

and then to top off try to get an Essential Fatty Acid(EFA) supplement that contains the Omega fatty Acids (Omega3, 5 & 9) You can get them in combined capsules now...sometimes called "Super Omega" ....the best things that provide this should contain Flaxseed Oil, Borage Oil and Fish Oil, and it is good to have something called GLA with that...some of the capsules(like the "super Omega") already have it in them....otherwise you can get it in the form of Evening Primrose Oil capsules

 

If you have a WalMart near you they have a brand called "Spring Valley" that you can get all these things in....it is much cheaper than most supplements and generally has no colors or other yucky stuff added

 

There is LOTS more to share with you, but as you are discovering, it can get really overwhelming to try to take it all in at once....so more info tomorrow ^_^

 

Just remember........MOST TS is inherited, so it is very likely that your precious little guy doesnt have it, and, if by some slim chance he does, it has a greater chance of being very mild and getting better!

 

Keep looking toward that light at the end of the tunnel!

 

lots of {{{{{hugs}}}}}} and blessings to you and your son :)

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Chemar,

 

I have my list and am going to Walmart tomorrow. I feel more comfortable with you telling me what to do than if a doctor were telling me! The best advice is what you get from someone who "has been there - done that". I know the Pharmacist there and he knows my Devyn and I know he will show me exactly what to get on your list. I have a little Prayer box that one of my girls made at evening Church and it says "Place your worries in this box throughout the day, then send them up to God when at night you pray". I got this little box out last night and scribbled a little note on it to please send me help for my son and placed it in the box. Need I say more......................

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Hi 7Roses,

 

I believe most of us have gone through that initial crying and worrying stage when we first realized that the tics were happening. I still do cry at times when it all just seems so overwheliming, however, with time, I have become more relaxed with the ticcing as long as it is not irritating to him as it has been in the past. I believe the worst is over for us mainly because of the natural supplements we are taking. My son is 7 and his tics are now minimal and have been for a few months.

 

I am one of the parents that Claire mentioned who has recently discovered an even greater success by trying the "no screen" theory over the last couple of weeks. His tics are now reduced to almost unnoticeable. I do believe they would possibly be gone if we cut out "screens" totally. The "screens" were cut out totally for one week and we saw drastic improvement. Since then he has had short episodes of watching here and there so the tics are still there but very minimal. We are working on a total weaning of TV but have struggled a bit this week with it.

 

I love the prayer box idea!!!!!!

 

The selective mutism is probably somehow related to the chemical imbalance in your son and you may be surprised that once you treat with supplements for awhile, his behaviour may improve in that aspect as well. There are socially-related behaviours that my son displayed for years that I never even would have connected to a chemical imbalance that have now improved since we have been supplementing.

 

Since you are taking the natural approach you will probably never experience the worst case scenarios that you have read about on some of the sites that you speak of. You are going in the right direction and you have to just believe that you will find answers with the proper supplementation.

 

Chemar has given you a start above so I won't overwhelm you with anything else at this point with specifics of what we have tried.

 

Keep in touch.

 

Heather

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7Rose,

 

If it was an IgE (RAST) food allergy test, they have a lot of false negatives. I wouldn't rule out food sensitivities unless it was an IgG allergy test for delayed reactions.

 

Depending on the TV experiment, then you might try an elimination diet such as Feingold. But it takes much longer to find out if food elimination makes a difference and changing your son's diet and eliminating screens at the same time would be rough on him, so one step at a time.

 

By the way, discovering and eliminating triggers can potentially make a big difference for your child But the items that Chemar and Heather referred to with supplements and correcting underlying imbalances is very important, and we are working on this also. As everyone is agreeing, this can be overwhelming, so one step at a time. When you do add in supplements it is good to test out one at a time in case your child reacts negatively. For example, some react to flax seed oil, some to fish oil. Then you think the whole program isn't working if not careful.

 

What most of us have learned here is that patience, prayer and the support of friends is critical to helping your child.

 

Claire

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Hi 7rose,

 

I guess we all had same experience as you’re having now. I still cry some days as it’s just hard to see our lovely children being differently sometimes. I’m glad to found this place. This is a wonderful forum and full of caring and love. I learned a lot from people on this board (Chemar, Clair, Jennifer, Heather, Efgh, etc.). My son started his tics last October. He’s not diagnosis as TS, and there is no family history (neither TS nor tics). My son had tried Feingold diet and TV/computer/games elimination once we understand his tics. It’s hard to follow for a young kid in the beginning, but all the efforts are worth. His tics are very mild (or barely noticeable) lately. In one period he also had frequent sniffing. Once he stopped taking dairy (and all dairy products), his sniffing was gone. TV/E-games are definitely triggers for his eye rolling tics. Honestly, I still worry sometimes as I don’t know what will be for my son tomorrow. On the other hand, I also learned that worrying may make things worse (my son is so sensitive and he can feel my feeling). I think some people already mentioned here: be patient and pray for God’s guidance. I would like to share some bible verses with you: “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble its own (Mathew 7:34)â€; “Do not be anxious about anything, but in everything, by prayer and petition with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus (Phil 3:6-7).†I guess you’ve already found a good starting point (per Chemar, Clair and Heather’s post). May God send more angels to protect your loved son. Please keep us updated!

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7Roses

 

I was in the same boat last year this time. My son started his tics last June. they started with CONTINUOUS headshaking and after 6 months he started vocal tics (slight grunts and repeating words and phrases softly). There is no TS or tics in either side of the family at all. No TS related conditions too. I never knew what a "tic" was until last year. Its really sad that he got it out of the blue. Still don't know how he got it. Since 3 months, his tics are mild and barely noticeable after starting off some supplements like multivitamin, flax seed oil, Cal, Mg and Zinc. He is on NO TV/NO dairy/No chocolates etc for the past three months and we found a good improvement after that. He is still not tic free but I only pray god that things are under control and stay mild. After his initial severe asthma days, I was shattered upon this development. I always hope and pray that things improve day by day but once in a while I still worry a lot about tomorrow.

thanks a TON to every member of the forum who has provided me a LOT of encouragement and support. Today I am in a better stage ONLY because of the members of this forum. I owe a lot to every individual here for their continued guidance, love, support, care and help.

so, hang in there and stay in touch.

 

goodluck to your son.

 

efgh

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