what is diff btw tourette and transient tic?

[quan_daniel]

Hi All,

First time posting. My son just started having facial grimace about a month ago.

The last couple of days he has been exhibiting a clearing of throat accompanying

his grimacing. I guess the guideline is for tourette is multiple tics and vocals.

However this does not exclude him from not having TS since this kind of disorder is overtime. Having said that how does a doctor diagnose a patience in one visit.

Do we have to bring out son back every month for the doc to check. This can

be tiring for my son and family. The most important thing is how do I find a qualifying doctor to make the proper diagnose. A bad diagnose can lead to a false sense of euphoria or depression. I feel ashame and guilt that my son has this problem.

I like to have things plan out but for this problem I don't know where I can begin to start.

 

daniel

[Chemar]

Hi Daniel and a big Welcome to Latitudes

 

Sorry to hear of your distress over your child's tics. Firstly, let me encourage you not to feel shame and guilt...this is not your "fault", nor is your child doing anything wrong.

 

Tourette or transient tic disorder is often difficult to distinguish in the beginning and doctors usually prefer to wait a year before giving a clear diagnosis of Tourette.

 

Ususally for it to be Tourette there have to be vocal and motor tics present for a year, and USUALLY, tho not always, there is a family history of Tourette, because TS is primarily a grenetically inherited tic disorder.

 

Transient tics can be caused by many things, and often disappear as quickly as they appeared.

 

One of the primary causes for transient tics is PANDAS... related to the strep viruses.

 

Another is PYROLURIA, which is caused by vitamin/mineral deficiencies and is often accompanied by smelly feet. If their is a history of alcoholism in your child's ancestry then you have another pointer to pyroluria., although it can also exist without that tag.

 

Many have also found that tics reduce when they remove foods that there is an allergic reaction too, as well as artificial "junk" food, especially food coloring and those artificial sweetemners like NutraSweet(aspartame) and Splenda(sucralose)

and other artificial ingredients.

 

There are MANY other things I can list that can cause tics, and you will find much info on them if you start reding thru some of the other threads here.

 

Also a great article by Dr Sheila Rogers here on triggers for tics

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

 

The best docotrs to clearly identify Tourette are either developmental pediatricians or neurologists, but as I say they usually would want to see your child again in a year to confirm. Also, do be cautious as many doctors want to just write a prescription for tics, and some of those medicines can have side effects that can be much worse than the tics!

 

I hope you will stay in touch here as this is a very caring support group where you will learn a lot, and also find people who will care for you and understand what you are feeling.

 

God Bless you

[quan_daniel]

Chemar,

Thanks for your great help.

Both my mother and I like to twirl object in our fingers. My Mom likes paper and

I like bottons on my shirt. We have no motor nor vocal tics.

 

I am not sure I have TS.

 

Your answer helps me greatly to prepare what is to come. The worst fear I have is not knowing what is going to happen with this disease.

 

I am bringing him to see a chiroprator and a neurologist in coming week.

 

thanks again

[Claire]

quan_daniel,

 

'Twirling things'doesn't sound like TS....

 

Here is a link I posted earlier on transient vs chronic tics vs TS. It adds detail to what Chemar

 

http://www.latitudes.org/forums/index.php?...p?showtopic=622

 

Do read the threads, as Chemar says, many things can trigger tics and you can likely greatly reduce your child's urge to tic (not sure of his age) Please do read the threads here for ideas. It is too early for a TS diagnosis in my opinion.

 

Also, re the throat clearing, does he actually have gunk in it? It could be a sinus infection. The grimaces are likely to be tics however.

 

Claire

[Guest daniel quan]

Claire,

Thanks for your response.

 

After you ask me the question on gunk in his throat clearing I observe him a little more. It seems he is making a humming sound rather than a throat clearing sound.

It only happens when he drinks milk or eating in a meal, rarely it happens without these activities but it does when he is tire during night time.

 

Thanks for the great link.

 

We are seeing a neurologist and a chiropractor in coming week. I hope I can learn more.

 

thanks

 

daniel quan

[Phyl]

daniel quan,

My son also used to make a humming sound (and sometimes also a throat clearing sound) especially after he drank milk or ate a meal. He had a blood test to reveal any allergies through our environmental/holistic doctor but it showed no allergy to dairy. He also had other tests which showed various other issues like yeast/fungal overgrowth and moderate dysbiosis (sp?). I took him off dairy and also wheat for over a year, to help his gut heal. Now he can have both with no ill effect, though he still doesn't need drink milk (he has cheese, yogurt and butter plenty). Good luck.

Phyl

[Guest daniel quan]

Dear All,

I finally met the neurologist.

He was the worst doctor I have ever seen.

He basically examine him and then he proceeded to read from 3 pages of literature which was identical to some literature I found on websites.

I talks about the different spectrums of tics ranging from transient to TS.

I try to ask more questions and he basically stopped me and ask me to search more on the website. I was wondering then why I waited an hour to see him.

 

He basically said the guideline for TS is one year but on avg is 6 months when the transient tics turned to TS. At this point I was scared at the finality that my son has TS. Guilt and shame just flood over me , again. He got up to leave I quickly ask more questions. Should my son stop Zyrtec, allergy medication that is taking for 3 years and now he is 5 years old. What are the side effect. He said he does not know and that I should talk to the pediatrician that prescribed it. I asked him about milk a contributor factor to allergy hence contributing to his tics. He says mitigating allergy diminish tics but not stop the tics. He just plain out said there is not much you can do. I gave up on him and he left the room with us alone with the nurse.She gave us more crappy literature to read.

 

I have finally decided to see an homeopath this weekend.

 

Is it true, if the transient tic even though is one motor tic and one vocal tic that last a year turns into TS. If turns into TS does it get worst. I am guessing everyone is different in that aspect.

 

Funny thing is my neighbor is a nurse that works in the same hospital as that doctor. She since told me many more horrifying story about him and other patients.

 

I am hanging in there. I was wondering if anyone has kids that have transient tics that last it more then a year but not ts and went away on its own.

 

sorry for the longed winded chat.

[Chemar]

Hi Daniel

 

oh dear! I try so hard to be fair minded toward the conventional medical community as I know there are so many great physicians amongst them that truly care and do their best to help people....

 

but

 

it takes an experience like yours to remind me of our own, and reinforce again why I just dont go near them anymore!

 

I am so sorry that, instead of helping you, you had a neurologist who caused you frustration and fear.

 

Have you checked into the doctors who practise an Integrative form of medicine yet? They are trained conventionally and fully qualified MDs etc, but have gone on to specialise in alternative therapies and a more natural approach to threatment.

 

Dr Rogers here at Latitudes has pinned a helpful way of finding one to the top of this forum

here is the link

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

Daniel,

transient tics dont "turn into" TS....if your child has TS, it is already there, and what that neuro explained badly is that they like to see if the tics continue for a year before they make a clear TS diagnosis.

that is because transient tics often disappear as quickly as they start, and so they dont want to give a false TS diagnosis if the tics have only been around for a short while.

 

Also TS is not a disease, it doesnt get "worse". it is what it is and the nature of TS is that sometimes tics are stronger (waxing) and sometimes they are weaker(waning) and that comes and goes.

As we mentioned in our other posts, there are things in the diet and environment that can make the tics worse, whether they are transient or TS, and so it is a good idea to try to identify these triggers and eliminate them as much as possible.

 

One thing everyone can agree on is that STRESS makes tics worse.

So it is really important, even tho we can sure understand how you are feeling right now, to try not to let your concern filter down to your child. It is hard enough for a little one to be dealing with these strange things happening to their bodies and minds, but when they sense that it is upsetting their parents, it just makes it worse for them, and often results in a tic increase.

 

I am going to urge and beg you again to try not to express the "guilt and shame" you mention, especially not to your child.

Why do you feel guilty or ashamed? You havent done anything wrong!

Those feelings and expressions of guilt and shame can only intensify the stress for you, and, if your child picks up on it, can cause intense psycological problems by making him feel that he is somehow to blame or at fault for having tics, and that it is something shameful. I speak from experience here as that is what happened to my husband as a child, and it left deep psycological scars for him, which still take their toll on him, even tho he is now in his 50s.

 

I do hope you will try to find a natural doctor to begin your son on a holistic course of tests and treatments.

 

Did the neuro mention PANDAs testing? If these tics have had a sudden onset, that really is something to check for, especially, but not only, if your child has a history of strep.

 

Also, the fact that you have had allergy problems....frequently allergies and tics are in some way related, and there are much better ways to deal with allergies than just to subdue them with meds like Zyrtec. I have heard some reports that Zyrtec and other anti-histamines can increase tics. A natural doctor will do thorough allergy testing for you and maybe work more on desensitizing, or other less drastic methods of bringing relief.

 

Also, do read up on the Pyroluria issue.

So many folks have found this to be the root cause of the tics.

 

There is so much hope dear Daniel that I really want to encourage you again not to be too despondent, although I know that is hard. we all want our kids to be perfect and never have any problems

but

with you making every effort to educate yourself, and finding a good doctor who recognises the importance of overall health and wellbeing, you really can help your child to enjoy an excellent quality of life.

 

We are all here for you, to share our experiences and what we have learned along the way.

 

No question is to big or small for us to try to answer for you.

 

blessings to you and your precious child

Cheri

[Guest daniel quan]

Cheri,

Thanks for your encouragement. You are absolutely correct. A cooler head will only help. The neurologist did mention PANDAS done through blood test. Basically he said if found to be related to strep then one month of anti-bioctic will clear that.

That make me unhappy. One month of anti-biotic. He also said that might cure it but no guarantee. He also said it was odd for Matt my son to only have one side of his face grimacing. He thinks it can be seizure while being awake but rule out because he is humming sometimes while grimacing on his left side. He just got glasses for the first time. The eye doc notice that his left eye same side as grimacing is not 20/20. I try to tell that to the doctor if that can be related. All he said was it is a chemical imbalance in matt's brain. Whatever that means.

I am going to a homeopath and looking at an allegist whoese title is Board Certified Allergist in Pediatrics and Environmental Allergies. It does not sound like he is a conventional doctor but also looking at the enviroment which my son lives in. Tics and TS is nothing to be afraid of but somehow these doctors tend to make us feel worst about it. It is like a finality and therefore we should beg for their wisdoms(which these docs lack of).

 

Thanks for all of your support. This is a great web site. Better then the 2 hour waits at the neurologist office.

 

daniel

[Guest daniel quan]

To all,

I just want to point out about anti-biotics and PANDAS(so much for this doc's opinion).

According to this websire anti-biotics does not help with PANDAS.

 

Q. Will Penicillin treat PANDAS?

 

A. No. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep., by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS.

http://intramural.nimh.nih.gov/research/pdn/faqs.htm

 

thanks

daniel

[Claire]

daniel,

 

Sorry for your bad experience. I am glad that you found another doctor--I hope they have experience with immune disorders.

 

First of all, the guidelines are 1 year (not 6 months) and Chemar is right that transient tics don't turn into ts. It is just that if they don't go away in a year, they are no longer considered transient (by definition). There are still 'chronic tic disorders also.

 

I hope that you can channel all your concerns into taking positive action to help your child. I don't think any of us regulars had tics just go away on their own at all. However, so many of us here have our children have virtually no tics now --or only barely noticeable to the parent but not to others. Your child's tics sound minor, and this may be doable for you. I wouldn't worry about the 1 year timeframe and a 'diagnosis'. Your child is young and the most important thing is that you help make his life more comfortable by doing all that you can to improve their immune issues.

 

I strongly recommend reading "Children with Starving Brains" by Dr. McCandless. Jennifer recommended this a long time ago and I finally finished it over the holiday weekend.

 

It covers testing and immune issue correction for ASD kids (autism spectrum disorder), and Dr McCandless mentions TS a few times--our own doctor thinks tics fall in this treatment issue.

 

I finally understand the relationships between gastrointestinal issues, mercury, food allergies and neurological issues. No matter what doctor you have, you need to understand it also.

 

When you meet with the new doctor, you might wish to ask him/her about tests for :

 

food sensitivities ( because of the humming when drinking milk)

yeast overgrowth

gluten/casein issues (also because of the humming when drinking milk)

toxic metals

vitamin deficiencies

 

The PANDAS thing is complex and the antibiotics are for two main reasons: to clear up an existing strep infection, or to prevent another reoccurence--if you KNOW that your child gets tics from strep. But antibiotics have their own problems. My personal feeling is that if you know your child doesn't have lingering strep (though tests if needed), I would focus on the immune system issues and rebuild program. Now I am no talking about parents of kids with rheumatic fever or some serious heart issues from strep.

 

Claire

[Guest daniel quan]

Claire,

I totally agree with all the 'regulars' that are in this forum.

Since the visit with the Neurologist. My son thinks there is something wrong with him. I need to assure him everything is okay.

I am going to an allergist who is aware of the following.

 

Specialties: Allergy, Immunology, Pediatrics, Environmental Medicine

Vitamin/mineral supplementation

Essential fatty acids

Gluten and casein-free diet

Diet avoiding food allergens and yeast

Feingold diet

Digestive aids/Probiotics

Colostrum

Transfer Factor

Antifungal pharmaceuticals and nutriceuticals

Secretin

Heavy metal detoxification

IVIG

Antiviral medications

 

I hope he is able to answer more questions that I have. I am embarass to say that I am still struggling with the difference btw chronic tic disorder and tourettes. The definition of both sound so much alike.

 

thanks

-daniel

[Claire]

Daniel,

 

That list of your doctor's expertise is absolutely perfect! Where did you get the name--from the lists on this site, or did you find the doctor elsewhere? You should be in good hands. All these tests are part of a very comprehensive assessment. Of course they will do only a subset initially, but this will allow them further assessments should the more common elements not bring results.

 

The difference between chronic tics and TS is hard to assess. I know that a family history of TS leads more to a TS diagnosis. Also, severity of tics. Based on statistics alone: If you have no family history of TS, then it is more likely to be transient or chronic tics. If you don't resolve the immune issues, then diagnosis aside, the child with chronic tics or TS may be indistinguishable by a casual observer. (Although chronic tics dramatically improve by puberty, according to other things I have read). I think it is premature to assign labels until you have tried to treat your child to see if mercury, yeast, gluten/casein, food sensitivities are a factor.

 

Please do sometime check out my TV/computer comments...if you have read the threads you will know that my son's tics disappear 100% with no TV/screens. A 'no screens test' for a week might also be on your agenda. This is only a temporary solution in that it doesn't address underlying issues, but it is one more piece of information that can help you help your child if you determine it is a major trigger. Your child is so young that should this be a factor, you can manage it much more easily than with an older child.

 

Claire

[Guest daniel quan]

Claire,

 

The doctor was referred by my friend whose son was having allergies for many years. Morton Teich is the doctor's name you can find him with more then 2 or 3 pages of hits on Google Search. I did the no TV/Screen test but unfoturnately it was halfheartedly. He sometimes stays in the afternoon at his aunt's house and his aunt's kids want to watch TV. It is very difficult to tell my wife's sister to turn that TV off. At home now a days he gets no TV. He does not complain. I make sure I keep him happy by playing with him outside. Lightning bugs are abundant now in NJ. I think TV is a substitute for parenting for most of us and yet not realize how harmful it is to the kid. I am guilty as charge there too. It is harmful because your kids activities become a couch potato.

 

We will be seeing the doctor a week from now. I will see. My wife is already against immunology shots to treat his allergy. I told her to have an open mind. I also told her to see if we can find alternatives if it comes down to immunology shot.

 

It has been May since his left cheek grimmacing and humming began. Somedays tics are less noticeable and somedays they are more noticeable. Especially when we came back from the Neurologist. He was so demanding on the child during the test. My son's had nightmare for 2 straight nights.

 

I think I am on the right road to help my son and thanks for all of you guys help I am that much faster in getting there.

 

My sincere gratitude.

 

daniel quan

[Claire]

Good luck Daniel!

 

One person here (Robin) had there child tic worse when getting the antigen shots, and stopped. I don't know if others do them. They helped my allergies, but I didn't have problems with tics, so I don't count there.

 

If he has food allergies, that is usually treated by food elimination for a time, then rotating the foods back in every 4-7 days. However, I do think that some doctors have different treatments.

 

I agree with you on the TV on all counts! My toughest (and really my only problem) is when my son is away from home. I used to tell the parents no TV/computer and they would do it anyway. And unfortunately, since the effect can linger for days, it can indeed mess up the 1 week no screens test.

 

I finally explained to the parents about the neurological reaction and that helped, but not completely. Just this weekend we went to a friends that we see only annually, who are aware of my son's situation, and I could still sense reluctance to turn off the TV for just that afternoon! After a few minutes of adjustment, the kids had a blast. In any case, we mostly entertain at our own home for families that we know have a hard time turning off TV for their kids. The kids know the rules when they come to our house--so it is their choice to come. We cleared out our garage for rainy day rough play.

 

My son was in a daycare where everyday they watched TV for 30-45 minutes. What I did for him was to buy him a ton of used comic books (he loved Garfield and Calvin and Hobbes at the time) and some music CD's and headphones so that he could have something to do during that time. (He was 9 when we started that). He had to go to a different area from the TV, because it was just too hard to be in viewing distance of the TV and not look. The other thing he loved were Harry Potter book tapes because it was kind of like listening to a show while others were watching one. You can get them at the library. For one week, he might be motivated to try it--then if you don't see improvement, he can go back to watching with the other kids. Of course, this is only worth doing if your gut says it might make a difference.

 

I think my son is more fit than most kids in his grade because of the restriction!

 

I think that certain doctor visits can be extremely stressful for the kids. How awful for your son, I am sorry to hear of his nightmares. You would think the doctor would have been more considerate of his feelings.

 

Thanks for keeping us posted, we look forward to hearing more as you progress.

 

Claire