Presenter: Sheila Rogers DeMare
Tourette Syndrome was described in a professional publication as one of the “most mysterious medical curiosities on the planet. To date, the primary research has focused on genetics along with disappointing attempts to find suitable drug therapies. Yet for decades, patients have reported that they have noticed an association between tics and allergic, dietary, and environmental triggers. Tonight we will explore some of these triggers.
Sheila Rogers DeMare is the director of the Association for Comprehensive NeuroTherapy. She is a leader in the field of integrative therapies for Neuropsychiatric disorders. A national speaker on Tourette syndrome she is the co-author of the study “Nutritional supplements and complementary/alternative medicine in Tourette syndrome” (J Child Adolesc Psychopharmacol).
Hello. My name is Kelly Teabo, and I’m with the New Jersey Center for Tourette Syndrome and Associated Disorders. And I will be your organizer for this evening, and would like to welcome you to our webinar on Tourette Syndrome. Help Control Your Tics by Learning What Triggers the. Thank you all for joining us. Before I have my colleague introduce the speaker for tonight, I’m going to cover some housekeeping items with you. All participants are muted. If you have a question, please type it in the bottom of your question box and click send. You may send questions during the webinar, however, we will have Ms. DeMare answer the questions at the end of her presentation.
We will get to as many queries as time allows. In addition, tonight’s presenter is available to take your questions on the Wednesday webinar blog, which is accessed from our homepage. Under the Heading programs, this blog will be monitored for the next seven days. Feel free to look and post questions as often as you like. Answers will be archived for future reference. If you missed part of the presentation or would just like to watch it again, an archived version will be posted shortly. We value your input, and in order to expand the webinar experience in the future, we need everyone to fill the survey out as you exit the webinar.
The New Jersey Center for Tourette Syndrome and Associated Disorders, its directors, and employees, assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented. We do not endorse any recommendation, or opinion made, by any member or physician, nor do we advocate for any treatment. You are responsible for your own medical decisions. Now, I’m going to turn over the introduction of our speaker here, Martha Butterfield, the webinar co-ordinator of N J. CTS, Marty? Thanks, Kelly, and good evening, everyone, and welcome to tonight’s webinar. Before I introduce tonight’s presenter, I’d like to take a moment to remind everyone about our Family Retreat weekend, scheduled for June 7, 8, and nine, at YMCA Camp Bernie, which is located in Port Murray, New Jersey. Families living with T S are welcome, and you do not have to be a New Jersey resident to attend.
Registration deadline is May 10th, and that can be done via our website.
Now, to the introduction of tonight’s presenter, Sheila DeMare, Sheila is a leader in the field of integrative therapies for neuropsychiatric disorders. She is Founder and Director of the International non-profit Organization: Association for Comprehensive Neuro Therapy.
As editor of Latitudes Online, she communicates regularly with physicians, families, and organizations to learn and share new findings on treating neurological conditions with integrated medical methods.
She served on the advisory board for Health Journal Television for several years during its production, and is the author of the Amazon bestseller, Natural Treatments for Tics and Tourette distributed by Random House.
A national speaker on Tourette Syndrome, she is co-author of the study Nutritional Supplements and Complementary or Alternative Medicine in Tourette syndrome.
A certified school psychologist, Sheila served as medical health liaison for the School District of Palm Beach County, and was program developer for their highly successful Children’s Service Programs.
She is also a consultant on the childhood obesity epidemic. Sheila resides with her husband in Michigan.
And Sheila, we are so happy to welcome you to our Wednesday webinar series. And now without further introduction, I’ll turn tonight’s program over to you.
Thank you so much, Marty. Can you all see my screen, Kelly and Marty?
Yes, we can.
So, thank you very much for having me. It’s exciting to have a chance to speak with your audience. And I’d like to thank you both and Faith for giving me this chance. I’ve been impressed by the willingness of your organization to be open minded, and share new ideas for finding ways to treat Tourette syndrome.
I started this about 25 years ago and we call the Group Association for Comprehensive Neuro Therapy because it’s not a topic that can be handled with a single answer. Sometimes you need multiple approaches, and we try to give people those options as we learn and learn from others.
My inspiration for this project was my son.
This picture was taken a few years before Tourette syndrome, ravaged his life and basically ripped my heart out because he began to develop serious tics, vocalizations, obsessions, anxiety and mood swings and things that had never been part of his behavior or life.
And we were pretty panicked. And we received a formal diagnosis of Tourette syndrome, but didn’t really have good answers that we felt comfortable with, that could treat him. Finally, we reached a point where I was considering the medications, because I wasn’t sure I could send him to school.
And about that time, I was fortunate to meet a mother named Ginger wake him, who had found that her child’s severe tic disorder as tourettes, could be treated through an allergy approach. She found there was an immune connection and that food and exposure to chemicals and allergens and nutritional deficiencies are all part of a larger picture. And he needed a whole method of treatment, and the results were so amazing that I follow in her footsteps. And my son also was able to recover beautifully, and that’s why I felt people need this information.
Now I never dreamed it would take 25 years; and now my concern is all the people who do not know that their case may have a connection with allergy or with environmental factors. And we’re going to focus on what that means. In a little bit.
Latitude the term means freedom of action or choice, and that’s why we picked that for our newsletter, our website as latitudes.org.
We also started a website stopticstoday.org, which was designed to help raise funds to have research into new areas beyond what’s typically happening right now. It’s been a very humbling experience. I think in a few years we’ve raised about $2500. So we hope at some point, someone will partner with us and we can fund some studies that look at some of the environmental issues related to Tourette syndrome. I’ve been very fortunate to have a medical board that helped me, and I’ll explain who they are soon. But tonight, I want to focus on when conventional medicine gets it wrong. How finding triggers can bring new hope to people. Discoveries from the tic community, and some tips and tools for your search will be giving you a resource link for that.
And as Marty mentioned, I’ve written a couple of books. So for each of those, we get a fair amount of research within the tic community, and through professionals to get information for them.
I’m really a voice for others. And there’s a lot of people who want to share what they’ve discovered in their own situation, and I think it’s certainly a field where we need to be all ears and investigating any clues that come up.
I was going to be giving an address at a National Tourette meeting, and the topic was natural treatments for Tourette’s and a concerned mother wrote to me.
And she asked, have you met with national organizations? Or talked with Tourette parents?
Because you have it all wrong.
And I certainly understand where she was coming from.
For decades, everybody’s been given the same message, which is basically that Tourette’s is genetic. And there’s nothing you can do except to reduce stress, try some medications, and possibly behavioral therapies can help. And we’re coming at it from a different angle. And just briefly, I think, actually that Marty went over all these things that I was the liaison. I think she said to the national Tourette association, and I have been at this for 25 years. And even though I’ve had some media exposure, met with a lot of people, whatever I have done has not been nearly enough or effective enough, because we have not moved the needle.
As far as conventional approaches to Tourettes, this was my advisory board I mentioned, and you don’t have to read through them. But it’s a real snapshot of integrative therapies and I’m thrilled that they have volunteered to lend their expertise to ways, to look at issues that can affect the nervous system.
I just got this in last week, so I thought I’d share it. I need notes like this once in a while. She said, I just finished reading your book and triggers. And I want to thank you for your expertise, research, and diet information.
We still have challenges, but you’ve helped my son tremendously and naturally.
So keep doing what you do. It matters, because this has been an uphill struggle.
But when you believe in something, then you keep at it, and you hope that eventually things will change. Someone from England wrote and said, Your work kept, my daughter become tic free after a diagnosis of Tourette’s. It gave me the courage to take control of our health, and that’s a big part of this, and find a solution in a world where the best pediatric neurologist were close minded.
A documentary on this could transform thousands of lives.
So there are people who have been deeply touched and greatly helped by the approaches we’re going to talk about. It does not mean that’s the answer for everyone, And it’s not going to appeal to everyone, but certainly, it’s not something that should be ignored. Given the limited options that are out there for people dealing with Tourette’s. I often start a presentation with the same story, and it’s an anecdote that there was a man who was looking for ways to solve that mystery of life. So he heard about a teacher over in the Far East. And he headed off to study with her.
When he found her, she was sitting with a handful of students.
and he introduced himself and told why he was there.
And she said, well, certainly take you as a student, But I have to tell you, I’m going to charge you double.
And he said that, that makes no sense. I’m very well-educated. In fact, I can assure you, I know more than these people who are sitting here because they look like simple villagers.
And she said, That’s exactly the problem.
First, I’m going to have to teach you to unlearn what you think you know. And then we can begin. So I ask if you wanted to get the most out of this presentation, is that you kind of check your mindset. If you really are indoctrinated into the belief that Tourette syndrome is something for which there’s nothing either the patient or their family can do at a personal level to address tics. Then it’s going to be harder for you to look for new answers.
I suggest you kind of put that aside and know that it’ll still be there. When you get back, It’s the same message that’s been given for 40 years. And it’s not gonna go away anywhere fast based on what we’re seeing these days.
Now, having said that, that I think you should put it aside. I’d like to point out, I do have a great respect for physicians and researchers think all research is important. And doctors are doing the best they can with what they’ve been taught.
What we’re going to hear today, when I kind of complain about the message from doctors, they’re repeating what is in the standard literature. And that’s their, usually their job.
I happened to come from a family of several physicians and my sister’s a practicing neurologist. So, I’m not here to complain about medicine except in this particular case, I believe that medicine has gone off the tracks a little bit and they’re going in the wrong direction.
I would like to kind of remind people that I think, this is what we want to hear.
If we go to my doctor’s office, we’d like them to say, let’s find out why you have these tics and see what could help you.
Instead, what happens is we’re told, let’s give you a diagnosis for those tics.
When they diagnose tics, I say, think multiple choice quiz because I’ve simplified this and I’m trying to point out that it’s really not a very helpful system that’s in place. If you have one or more motor or think of those movement tics are vocal tics for less than a year. It is diagnosed as a provisional tic disorder. Provisional means that it could change.
It’s basically the meaning. So, you’ve had it for less than a year, so maybe it’ll change.
Maybe they’ll go away or maybe they won’t, but that is the diagnosis. Or, if you’ve had a movement take around vocal tic for more than a year, you have a persistent or chronic disorder. Now, I don’t think many people would consider that a real stretch to say you’ve had something more than a year so it’s chronic.
And then, if you’ve had both motor and vocal tics for more than a year, not 11 months mind you but more than one year at 12 months then you now have Tourette syndrome.
I find that a very unhelpful process and when parents leave the doctor’s office that usually feel they don’t know much more than when they went in but that is the system And so, the doctors following what’s been provided for them as the way to diagnose tics, so checklist, we’ve figured that out.
Then this is the advice that’s typically given to parents.
It was given to me, 25 years ago, and it’s still being given to parents. Based on the feedback we get. Nothings ever 100%. There’s some people who would do something a little different. Basically, and when we’ll talk about Tourette’s syndrome, It’s genetic and there is no cure.
The tics will come and go and we call that waxing and waning.
That drug side effects can be worse than the tics. I think. We’d agree with that from what the doctors tell us. And you should tell teachers and family, and try to reduce stress.
And if someone asks, if there’s anything they can do, they say, Oh, there’s really no studies on that.
So, basically, there’s really nothing you can do.
Now, let’s look how this plays out for the child, who’s in the doctor’s office.
He or she has come looking for help.
Her body is out of control.
She’s making strange noises.
She’s just learned that no one knows why this is happening to her.
It might get better, but then it might get worse.
There is no cure.
So, she should tell people that this is the way she is, this is the problem she has.
She’s also learned along with her family that it’s a mystery because the tics will just come and go on their own.
And so the medical term for that is waxing and waning.
And if, as I imagine, most parents do, they say, Well, what else can we do? Oh, is there a connection with diet? I’ve read something about allergy.
They are, unfortunately, often told, studies do not support it.
And they really, what they should say, is there are not studies. Why don’t you go ahead, see what you find, and come back and tell me.
But instead, the message is that it’s wasting your time because studies will show that it doesn’t have any connection. So then this child goes home and she Googles Tourette syndrome, see some YouTube tapes and get scared out of her mind.
So we have to ask ourselves, what are we really doing here?
And I suggest it’s time for a reality check.
A man wrote to me and said, my brother suffered with Tourette while growing up.
When my son started having tics, I check to see what was new.
Wow, basically, nothing.
Basically, nothing has changed significantly.
So, I say Newsflash, the current approach to tics is not helpful.
In fact it can be harmful, and we’ll talk about the reasons for that.
The number one most misleading concept, if you want to find triggers, is this mysterious, waxing and waning of symptoms.
Because you’re on this call so that you can learn about triggers, that’s a term that is best put aside.
All it does is say that that tics are going to come and go and the doctor doesn’t know why, and the doctor doesn’t know why, because nobody’s looked to see why it might be happening.
It’s a phrase that becomes part of the family, really, like someone might say, oh, George was worse tonight, you know that waxing and waning.
What waxing means is that tics are worse, but waning means is that tics are better.
And I’d like to suggest that what you start doing.
Say, oh, that tics are worst tonight.
I wonder why.
And the same way, if you had a stomach ache at night, it’s a I wonder why I have a stomach ache.
You know, we live in a world of cause and effect.
So something has caused the tics to be worse, and something is allowing them to get better.
And you need to empower yourself to start thinking in those terms to see if you can figure out what kind of a connection there might be other than stress or anxiety and excitement that’s affecting tics.
So sometimes medicine gets it wrong.
And just very briefly, that was widely covered in the media when these two doctors in Australia discovered when it took them 20 years to convince medicine that the cause of peptic ulcers was not stress and tasty, spicy food or too much acid. But it was a bacterial infection.
Here they are, they’ve heard that they’ve got the Nobel Prize for the discovery.
The field of autism closer to our realm of Tourette’s Syndrome. Doctor Bernard Redlands, was on our Advisory Board a wonderful man. And at the time that he had a son with autism, the prevailing thought was that mothers were not loving to their children. They were called refrigerator mothers and they were blamed for their child’s condition, and everybody jumped on the bandwagon.
These two doctors, Kanner and Fetlheim proposed it, and people bought into it. So mothers were guilty. Children are not getting any help. Then doctor Rimland came along and said, hey, wait a minute. My wife is very loving and warm. This absolutely is not the case, and through a lot of effort he did, on a collaborative level, with other researchers, and getting feedback from families, and studying at a research level, he was able to prove that it’s a biological condition.
So, in both those cases, medicine for decades gave the wrong message to families.
And I would like to suggest that: to tell families with no medical basis, there is no medical basis for saying it’s genetic and no cure.
For telling people that mysteriously, they come and go without empowering them to think about, might there be a reason.
And to tell them there’s nothing they can do. So they go home and just watch what happens.
We suggest that instead, we embrace a new paradigm, which means a new way to understand Tourette syndrome.
I’m going to tell you a short incident that turned our lives around, and I think it’d be worthwhile for everybody to consider, including any physicians or medical practitioners who might be on this call. I took my son had just been diagnosed with Tourette’s, and I found a doctor, who I heard, would think, outside the box and my boy was probably nine years old at this point.
And he’s standing in the middle of a room, looking at the doctor as I sit to the side and he’s wincing in his face then is jerking in his head and his shrugging his shoulders. And he’s trying to control themselves.
And his name is doctor McDonald’s. He is very kind fellow. And he looked at me, and he said, what’s the problem?
I was a little surprised at that question. I said, wow.
He has Tourette’s syndrome, and it’s getting worse.
And he said, no, that’s not what I asked you.
I said, what is the problem?
I said, oh, OK, the problem he has all these tics.
And he said, Sheila you need to understand tics are a symptom.
They’re the body’s way of saying something is wrong inside.
Won’t you fix it?
And I’d never thought of it that way.
And I’m going to introduce you just briefly to three pioneers in the field of Tourette syndrome who thought about those that approach, who thought of tics or any symptom, as something that you should try to fix and address. Theron Randolph is the father of environmental medicine, and he was the first one to write about Tourette cases that are linked to food allergy.
Doctor Marshall Mandell spent a thousand of his own hours studying in cases of kids and adults with Tourette’s, and found that their tics since other symptoms were closely related to immune issues and allergy and food sensitivity. And most of the cases, not everybody, but most of the cases and doctor Doris Rapp took a child with Tourette’s on the Phil Donahue Show, and she had seen the same connection.
And she said, look, they can react to foods that can react to allergens She had videotapes.
And she could not get anyone to listen to her except parents, and they were swamped with letters. And she has a great following and wrote amazing books.
one of them is called, Is This Your Child? And, I was going to be giving a talk at a conference, and I called her up a few years ago, and I said, is there anything special I should say?
And she said, Yeah, just give ’em hell, Give ’em hell, because she knew, from all the work she’s done, that they were on to something, that there was immune connection, and that she could not get doctors to listen to her.
So their finding was that Tourette syndrome is an immune, allergic and environmental condition, in many cases.
So someone once said, Hey, I can’t be environmental. It’s neurological.
And that’s a very understandable thought.
However, science has told us that Tourette’s is a genetic and Environmental disorder. It’s not just an genetic.
In Fact researchers have suggested that it’s 60% genetic and 40% and environmental.
I mean, think about that, that’s almost 50 / 50.
So let’s see what we’ve been doing as far as exploring the environmental part, which relates closely to triggers.
The saying is that genetics loads the gun.
And the environment pulls the trigger.
So you can have two identical twins.
If they end up in different environments, the way their genes play out can vary.
Well, we can’t control what genes we receive, but we can change our environment.
So what are triggers?
Triggers are anything that’s affecting you from the time that you were born. The health of your parents.
If you have allergies, could be to an animal tolerance, dust molds anything in your indoor environment or outdoors.
Food and drink.
Stress, thoughts, and emotions.
Changes in temperature. Sometimes people say, if I was called on that came into a hot room, my tics got worse. If I was hot and I came to cold room, my tics got worse.
So people that I’ve talked about whether in seasons, fragrance and odors are very big one for many people. And then infection can cause tics to develop.
Sensory input is something we will talk about.
Chemicals in the environment and also drugs that you may be taking. These are all types of triggers, all right, types of ways the environment can affect you.
So there’s conditions with recognized symptom triggers, and I’ll quickly list them.
If you look at them, you’ll see that there’s many that are related to neurological conditions or emotional conditions that might overlap with Tourette’s. You got HD and anxiety and asthma, Autism.
There are more people with epilepsy among the community than others. Depression, headache.
Migraine, ice, definitely pandas and pans is such a serious and important condition.
If all of these conditions have recognized symptom triggers, why does the field of Tourette’s syndrome not look into this and share them with the public?
Briefly, when kids come to a doctor, because of tics they very often have other health problems, this is taken out of the research. I didn’t make this up. But, still, when that happens, they’re not, they’re not really examined. That checklist is used for tics, and kids often are sent home.
So, these are some of the conditions that may actually be taking place when someone comes with tics.
So, what we suggest to doctors is that they learn to collaborate a little more, and if they don’t have an answer for what’s going on, see if there’s a diagnosis, do they suspect that there’s toxic exposures or an immune problem?
Could there be a nutritional deficiency or food intolerance? And try to refer out and help people find additional assistance beyond what you may be able to offer.
The first list of triggers for tourettes came from a survey we did on our website.
Almost 1800 people participated, and since then, hundreds of doctors and patients have shared their findings. And we’ve incorporated those into my recent book on tics. But this is the first survey.
And if you look, you’ll see that there’s foods and artificial colors, animals from allergies, and mold, exposure, and new carpeting that gas is toxins. Allergens like dust, foods like dairy, corn, and orange juice, a whole range, preservatives, and MSG, perfumes and scented products, Paint thinners.
This is what people who have tics who’ve never been told that there’s such a thing as triggers noticed themselves and themselves or their kids, and they reported it, OK.
And the first thought is often, holy mackerel.
There’d be so many triggers critics, but what happens to trigger lists is that you put everybody’s down. The people report, as long as there’s more than one, you know, a substantial number, but that doesn’t mean those are going to affect everybody. It’s just like food allergy. Different foods affect different people.
So here’s just an interesting concept.
School aged kids, with Tourette syndrome, have been shown in research to have four times the incidence of migraine, which is clinically very important.
Migraine is a condition where people recognize triggers.
You can go to the Mayo Clinic. Down, here is the source for this Mayo Clinic and medline Plus, which came from the NIH.
They have prepared lists of triggers that are very similar.
They’ve got foods and preservatives and MSG and paint thinner, and nitrates which preservative came up and someone for the Tourette list.
And there’s a huge overlap with this.
So what’s interesting is that you can go on the Internet when you got off the call tonight and you can Google triggers for migraine and you’re going to get a big list like this. Different hospitals have different ones.
The triggers for Tourette syndrome, you know, have that got made?
I’m sorry. I get a little emotional about this partly because it’s so frustrating.
Partly, because, my son is such a great kid, he was in college, And he called me up, and he said, Mom, I found a really great survey platform. So, sophisticated, we could put it on our website, and people can only reply once, and tell us all their triggers, but they’re not going to overload it, they can’t come back again.
So, he said, let’s put it up, and see what happens.
So, that’s where the triggers for Tourette syndrome came from, and nobody else cared to replicate it.
I do know an organization that did three surveys offline and those results have never been reached released to the public.
But somebody needs to take this seriously and do major – we could easily do a survey of 10000 people and find out what’s triggering them and get the word out to people.
So potential triggers to investigate: food and drink, allergens, chemicals, and toxins and infections. That’s just kind of grouping. All the different ones you’ve been looking at.
Food and drink is the one parents think of most often, and that people who have Tourette’s maybe can easily notice a difference. Some families have allergies and some don’t.
Some have unrecognized allergies but it’s definitely something to think about.
Chemicals and toxins refers to chemicals in your food and toxins in your environment, in your home, outside, on the playing field.
And infections are very, very difficult. one, sometimes you have a hidden infection, sometimes. It’s bacterial or viral or something more obscure even parasitic infection. And usually you need professional help to start that out, But there’s a lot of areas you can look at, which is a good thing. The other thing is, it can be overwhelming for people if they don’t have a little help in getting started. So you start slow and started some of the basic ones, which we’ll talk about shortly.
This, I find very frustrating:
OK, a cardiologist in the 19 eighties wrote what he observed was triggering tics in his daughter and it’s a letter that he had sent to a national group at the time they shared it with the public, but don’t anymore. But it was, first started out, that he found diet, made a huge difference. and he explained that part, and that he found, she had allergies, he never knew she had.
And then he talked about chemical exposures, which is probably the most overlooked, I would say, when people go look for triggers.
And he wrote that an exposure to fluorides, doubled her tics.
A diesel motor running increased her tics – it had been running in the driveway for hours.
Exposure to paint, exposure to paraffin in a small restaurant with burning candles, produce non-stop tics until we left. Now this is a cardiologist sharing this information because he wants to help other people.
And he closed his letter by saying, and my opinion, per sensitivity to chemicals, produced a marked increase in the intensity and frequency of her symptoms.
When we have a condition, for which there’s supposedly no answers, then every clue like this that comes in from every parent, from every person who has Tourette’s themselves, should be kept in a file and carefully examined, and we should be actively looking for more reports such as this.
So that was like 30 years ago, and nothing has happened in this field related to toxic exposures.
This one I love:
So sometimes I put the same in was my books because they’re just kinda charming, and I love the feeling behind the person who sent it, so this fellow said I’m a clerk at a Canadian post office and one night I was sorting binders of magazines entitled cosmetics.
I was, looking at this title word, on cover after, and then my Tourettic mind, because he said, he liked to play with words, started looking at it from a different angle.
I saw the title become Cosmetics as pronounced cause me tics.
And it’s true.
They can cause me tics so many people are affected by scented products and having their tics aggravated. And that’s highly promoted within the migraine community, but not in Tourette community.
Going to flip through these, which is really an explanation of why you’re a doctor does not know more about this. Your doctor knows a lot, I’m telling you, any doctor can run circles around me, as far as some scientific concept or neuro transmitters. They don’t know this information because they have not been taught it by the leaders in the field of Tourette syndrome. Diet is one of the issues people are most interested in. So movement disorder, let me explain too.
This is on a site that tells you research, you can go find research PubMed dot gov, G O V, But it also reflects general interest in that subject studies that are related somehow to that subject. So, for example, autism, they’re very interested in diet.
There’s almost 700 that fall in that category.
But that doesn’t mean there are 700 studies specifically on autism and diet, but it’s definitely a huge interest.
So Tourette syndrome, let’s see how interested our field is, How much researchers have dedicated their time to studying diet and Tourette’s. That is basically a meaningless number.
So now we’re going to go to the environment.
We saw that the environment is 40% part of the Tourette Syndrome experience, movement disorders in general, almost 3000.
Now, Autism, they’re very concerned about the environment, because there’s this huge increase in autism.
Well, as we know, there’s a huge increase in Tourette syndrome. It’s now estimated to be one in one hundred when it was very rare.
And it’s not that we’re just identifying it more when you check your tic, People know you have a tic. So, this is not some, there’s no way to explain this away, except that the environment is very much involved. So how interested are we compared to autism?
So what’s the important is to see the trajectory here, we are losers, basically, we have neglected, very critical fields that author conditions are taken seriously.
Here’s allergy, There have been studies definitely connecting allergies to Tourette’s. So here we go.
Again migraine, remember how we’re associated with migraine to some degree. There’s an real high incidence of migraine among us with Tourette’s.
We should be all the lead, we should be studying the allergy connection.
But why not?
And the last one is pesticides.
My son had an experience of being caught outside when an airplane when over and dropped mosquito spray directly on our streets.
His tics went off the law.
He had been fine until he went off the wall and the mood swings. He was angry.
And that was like a Jekyll and Hyde experience from being exposed to pesticides. Parkinson’s, and there’s more people with Tourette syndrome than Parkinson’s, over 2000.
Pesticides are narrow and targeted. They are developed for the purpose of disrupting the nervous system.
And yet I have never read an alert to the Tourette community that they should be aware. Everybody should be aware of the dangers of pesticides are cancer causing.
However, Tourette syndrome, anybody with that should very carefully stay away from pesticides and herbicides. So let’s see where we come here.
All right, Keeping to the course of ignoring environmental factors and still saying, Oh, there’s no studies that support that.
So, conventional medicine has ignored the role of diet and the environment and ticss. And meanwhile, it has little less little else to offer.
This is the imbalance, and I suggest we get going and do something about it.
Doctor … was a huge later in nutritional therapy. He said, It can take 50 years and medicine to change people’s thinking, partly because some people have a mission to preserve their own territory. They don’t want to be collaborative. They don’t want to expand the areas that are being looked at.
So what we have is we say it’s genetic.
You say it’s a mystery.
We don’t do the research.
And then we say there’s no answers.
Many parents will say that there’s hypersensitivity with their kids and these can be triggers. It can be temperature changes.
Lot of people complain if they’re too hot, say that aggravates their tics.
Odors can be even odors in the kitchen of food cooking. But it can’t be perfumes, scented products, chemicals in the environment.
Touch and movement. I know a lot of parents have noticed that. Their kids don’t like the feel of their clothing on their skin or,
they don’t want someone touching them sometimes, or, if somebody holds their hand, it sets off a tic.
And even, just moving it starting movement can start tics.
Visually, there’s hypersensitivity too.
Can be things like flashing lights, fluorescent lights, different wavelengths on my more sensitive as they sing something with the blue line. or if they have a, let’s say a green overlay kinda reduces the visual strain. And I’m just touching on these, they’re actually areas that you could need careful discussion. So I’m just throwing them out at you quickly to realize the opportunities and the challenges and finding what might be triggering things, editorially. It can be loud sound. People have also said that certain pitch bothers them or a certain rhythm of music They’re listening to can trigger their tics or aggravate tics.
So, when we look at food, you’ve really got about four things I would say that you should focus on.
one is food allergy, which can be determined in a blood test.
Then, there’s food intolerances which are different from that, and they can change over time.
Somewhat factors even, know, now you hear a lot about gluten. A small percentage of people are allergic to gluten.
And a larger number of people have a sensitivity to gluten but it’s not a true allergy, or celiac disease.
And that’s just one intolerance, there’s a number of intolerances is people can have and the good news is as you can healthier, if you can address your immune system issues, sometimes those can improve. Sugars in general should be reduced and avoided, not just corn syrup and cane sugar but too many sweeteners, many parents have reported and set off tics and then all additives, chemical additives, top of the list, artificial flavors, colors, and preservatives. It is all those things you can hardly read on the label, you really want to stick with natural and organic foods, as much as you can.
Number one question I received next to diet is probably vaccines, And I’m just going to touch on this briefly. You’ll be able to download the slides. And if you want to look up the research, you can. So, the thimerasol, is that mercury ethyl mercury, that was in vaccines. And everybody got up in arms with concerns because it was in so many vaccines and nobody had added up just how much people were getting.
So it’s mostly been taken out of vaccines but people studied when they were receiving an aerosol. And there’s five studies and they all mentioned tics. So I’m just gonna quickly go through this.
This was looking at when they’ve had their vaccines at three months and had thimerasol. Now that’s the key. And there was a positive association with tics.
This one when they have the diphtheria, tetanus pertussis shot, didn’t find a connection except possibly with tics.
Here tics for one of many problems that these researchers found with a cumulative exposure of thimerasol.
Thimerasol exposure in infants, that’s what they are looking at here, consistently significantly increased increased rates of tics?
And this last one’s very interesting.
Thimerisol exposure early in life was found compared when they were 7 to 10 years later.
There was only a small but statistically significant association and the presence of tics in boys 7 to 10 years later. This is the most recent research.
It was from 2012, 5 studies that showed that ethyl mercury could it would appear, play a role in the development of tics.
I wanted to emphasize that most vaccines in the United States since 2001 are now thimerasol free.
And according to the CDC, all are available without the mercury preservative, but you have to ask for them.
So the flu shot has mercury in it.
It’s usually in multi dose vials. It’s a preservative, so it’s cheaper and easier.
But you should insist on having a solution, if you want a flu shot, insist on having one that’s a single dose, it’s called.
And it doesn’t have the preservative in it. If you’re in another country, you should be proactive and check your options. Unfortunately, the World Health Organization has said that when they go to developing countries, they have to use the multi dose vaccines because it’s much more cost effective.
I always suggest these questions and I’ll just run through them real quickly, brighter minds than me can try to interpret this, But if ethyl mercury can trigger tics, what other toxins can do so.
How long do tics that have been caused by Thimerosal continue?
What should be done to remedy a toxic overload? And then, what happens if the saint children are given a flu shot every year that has ethyl mercury in it? So, again, that’s fine. You want to be sure to get one that does not have Thimerasol in it. And I’m just wondering, how does that shot a flu shot effect a fetus of a pregnant woman if they don’t know to ask for it without thimerosal?
Challenges and trigger monitoring, I’m just overlapping needs to tell you that they’re all going to be playing a role in anytime one of them can kind of jump up and outweigh the others.
Like you could be following a diet you’ve just started, I’m perfectly, at then have a major toxic exposure or an infection flare up.
Or Grandma got a cat, and you didn’t know it and he’s allergic to the cat and he’s spending time over there. Those are the types of things you have to keep a log. And you have to stay patient and find your way through some of the ups and downs when you’re doing trigger monitoring, and we do have some tools to help you with that.
So getting started with diet change. That’s the thing, that is really a family issue. And your attitude is going to make a big difference. Now, it’s hard if the doctors already told you that diet has nothing to do with it, so, it’s helpful if you have a doctor, who will encourage you and work through issues with you.
Um, some simple things that you want to do is avoid caffeine.
Eliminate all the additives and check with your family history. Does your family history have any intolerances and allergies that you might want to go ahead and test out for yourself?
You can see an allergist and get some blood work done to get started.
And then, that’s especially for the true allergies and then for sensitivities. There’s a number of different types of doctors and practitioners who can help you with that either through blood work or through other types of testing.
And remember that intolerances may change and try to keep a positive attitude.
And we have charts, even, that you can use with your child to encourage compliance. Because, let’s face, it, nobody likes to have a diet changed, and especially some of their favorite yummy delicious foods might be taken out. It takes effort to try to find replacements for those. This person wrote and said Food additives are causing tics with artificial colors at the top of the list, and artificial flavors next. But, neurologists psychiatrists thought we were imagining it. Challenges at school are, there’s food before school, there’s snacks, those afterschool food, and then there’s lunch. Even when you pack a lunch for the child, you’re going to have things that need to be addressed. So talk to the teachers. They are fortunately more aware of specialty diets nowadays. And if your child has a significant problem, it can be written into the school plan for the child. He has a right to have accommodations made, that’s called the 504 Plan.
Your attitude also with the teachers can make a difference but they should not be handing out candies with artificial flavors and colors and you can actually be someone to educate them and help them with that. This person said they used an elimination diet and discovered that ticss for brought on by gluten, corn, cane, sugar, and MSG. An elimination diet is something that we cover in our books, you can research it online. And it basically means taking away some key foods for an extended period of a few days, to several days. And then re-introducing them and you literally can watch for a reaction.
Very, very helpful and considered the gold standard by all allergists.
It’s never too late to find triggers.
This man, I’m 47 year old guy wrote, instead I suffered from tics on my life.
And my dad still remembers me sitting in a chair and jerking my head so hard. He thought I was going to break it.
And in fall out of the chair, and he said my dad remember sitting there and just crying because it, he couldn’t help me. And this man was at a conference and have been experimenting with food. And he found out that additives in processed meats were super toxic for him. And once he discovered that, he started looking at other diet issues and he said he suggests readers who suffer from tics in Tourette’s, are conscious of what they eat, and read the labels of food products, and experiment with foods and other factors. Anything that might alter, modify your tics, tensions, and anxiety, and keep good records. That’s really a big key.
Doctor Leo Galland, who wrote a book, The Allergies Solution, note that nothing produces such dramatic relief as identifying an allergic trigger and eliminating. So, when we talk about allergies, and, again, you have to check for yourself, think about it in your family, might there be allergies.
These are some things you want to look at, and these ideas for a bedroom are the same as throughout your house.
You can dust proof beds and floors. Use natural bedding and furniture. We’ve had people write that. They brought a couch in that had been treated with flame retardants and stain retardants, and tics started up immediately, and they had to get rid of their couch. That’s from a chemical sensitivity. Check for electronics. Try to limit the electronics in a bedroom. Make your bedroom as sort of as a safe haven. Look for mold that you might not be aware of anywhere in the house. Do not use scented products or candles. If you have pets, now they should not be sleeping in the bed. Of course, if you don’t have allergies, that’s fine.
And consider air quality, air purifier, pollen and mold, by many people have been associated with their tics flaring up.
Use unscented, laundry products, and other products in the home.
This is a big one. And parents have reported it. It’s a very big problem that toxic chemicals are used on parks, athletic fields, and golf courses, pesticides, and herbicides. And if you think you might have a problem, and if you have Tourette’s, I would suggest you do this. You can check with the person managing the grounds crew.
Find out, when they do their applications, find out when they would have dried up, or not been as much of a problem. You’re not going to find them to put organic things down, probably, but you can at least know what’s happening.
And work around and accordingly. That new car smell is toxic. Exposures to gas and exhaustive pollution can be bothersome. I mentioned candles but plugins are one of the worst problems.
Go online and read about plugins and you will find that they contain toxic ingredients and you really want to just be breathing fresh air.
Electronic challenge, this is a topic in itself, but we know many people that are reporting that exposure to tablets and phones and computers are aggravating tics or playing video games, and all you can do is watch it yourself and try to minimize what you see happening and set some guidelines.
You can easily find naturally cleaning products. Keep in mind, that any kind of pet, has the potential to aggravate allergies. Most kinds of pets. Not everyone- fish are, OK. All right, read labels on personal products because those are absorbed by the scanner as you breathe them in. Related to chemical sensitivities and monitor stress and fatigue.
So, that was rambling through a lot of ideas. I just want to briefly hit on five steps for success.
You have to empower yourself.
Doctors are not going to encourage this just because they haven’t yet been taught that it matters.
So you’re going to have to take the reins and some of you have all the resources you need. You’ve got support. You’ve got the time to work on it.
You’ve got financial resources and others of you, I know, are so overwhelmed that the thought of reading a label makes you want to just sit down and cry. But start low, starts simple. Start with some of the basics and do not wait for research on triggers, because the as
you saw from what we went through, there are not going to be studies on research to satisfy doctors for quite some time.
I was looking, there’s nine different studies on perfume and migraine.
You would think one would be enough to just tell people this can trigger your symptoms. Be careful whether its perfume, or Cologne, or some other scented thing in the home can be created, can be shampoos something scented.
Just don’t wait.
Move on, and start logging things and keeping track yourself.
Seek support, whether it’s from another parent, from a relative. See if you can find a teacher at school or a guidance counselor that understands your needs and get professional help if you need it.
There’s a lot of integrative doctors now and some chiropractors some naturopaths environmental physicians. We have a list of types of people you might want to go to in addition to your conventional doctors and conventional allergist and then assess and adjust. Be prepared that you are going to make some findings. You’re going to switch and findings, you’re going to question yourself, but if you keep at it and you think you’re on the right track, then it’s very, very valuable exercise.
This is our website latitudes.org. And you can go to tics and Tourette’s.
If you click on that, you’ll get an overview of our philosophy, something you can share with others, and we also have a section health conditions that list a lot of family stories and prevention and treatment or research. And then we have our forums over here. I highly recommend that you get on there and find out what others are doing and ask for advice.
Here’s a snapshot of some of the resources we’ve offered, and I’m going to give you a link when you can download them for free. We actually made a page that was designed as a supplement to the book, and you get more explanations are in the book. But, something like this one, Checklist for observing and brainstorming, tic triggers, is very valuable, because it will help you think of things that you might not have thought of before, and you print out if you copy. She got here at once, you learn in a couple of months. Go back to give it another thought.
Then we have these, the things I’d mentioned, that we have things that will help deal with the kids.
For young children who are aware of their tics, somebody, rather that their child is very concerned about their tics parent told me that this child is really very emotionally distraught at this point. And so, if your child doesn’t care about tics doesn’t even know he has the tics or she doesn’t know. Then you don’t do this. But otherwise, you sit down and you talk about what makes me tic. And these are actually, like, a lot of the triggers that older kids think about two or that you can be aware of. So there could be something like, just tell me. If you go out in the sun, does it feel like you’re going to take more? When you plan the computer pioneer in the swimming pool, that’s a tricky one, because chlorine and other chemicals can definitely stem optics for some people. And then somebody to swim glass wash it off quickly wear goggles are charged in a place that doesn’t have substituted waters, just being in school reading.
When you feel sick, if you too hot, and it gives the child the chance to realize that maybe there’s something happening that’s not just, there’s so much of a mystery, maybe there’s some reason that’s happening. So, I hope that, that’s helpful. This is the link.
But you can click download the PDF later and you will find all the charts and just find some other resources. Including some places, you can go to look for help or that you can learn a lot more about food sensitivities.
So, this is my last little slide.
I always include just answering for it because he was so sincere. And again, he wrote it some 20 years ago, and it’s been shared and shared.
She found something different than what some of the others report and then that’s another reason I include it.
Because just you know, if you go to get eyeglasses, you get a prescription, your prescription is different from someone else’s.
People have a range of problems and this may have found something that would be very smart just to eliminate anyway.
But what he said was, I suffered from the embarrassment of Tourette syndrome, all my life.
I’m 42 and a medical technician.
15 years ago, I changed my eating habits.
I drastically reduced refined foods and red meat, I ate more raw fruits and veggies, I started nutritional supplements, but it wasn’t until I stopped consuming corn syrup, especially high fructose corn syrup, that my symptoms almost entirely subsided.
And, then he said, do not think this is all in my head, I am well aware of the placebo effect and can assure you, this was not the case.
Please, do not let this letter and end up in a wastebasket, I feel strongly, others can be helped.
And I hope that is the attitude that we all can take, was what we’ve learned from others.
During this webinar presentation that we share it, we encourage sharing, and we all look for new answers and support one another.
So, thank you. That is my conclusion to this website or Webinar, sorry.
OK, thank you. We’ve had some pretty hot questions here OK. So, one of them I think we just want to clarify. You had so the question is about when you were talking about Thimerosal, and vaccines and so forth.
There’s, the question has to do, about making it sound that you are opposed to vaccines, and so, I know that you’re not. So, I just would like you to address that. Yeah, you know, and I apologize, because I was watching the clock and realizing, I need to speed this up.
And I forgot to clarify that we are not an anti-vaccine organization.
We support safety and vaccines, like many people do.
And the reason I brought this one up is it directly linked to tics. It’s the only thing I know that’s linked to tics and we do not take a stand otherwise on vaccines.
But especially because this is something that happened in the past that Thimerosal is given. It’s out of most vaccines now, but it could be something that is affecting kids that have tics today.
And so we encourage people to be educated on the issue of finding vaccines that do not have Thimerosal, which is the majority of them but the flu vaccines are very common.
And that’s one that. I think it makes sense for anybody to try to have one that doesn’t have that mercury in it.
Is that clear? That clarifies it.
Yeah, although the Thimerosal has been really off the market for quite awhile, now, it’s it’s not in it since 2001.
According to the CDC, it is not in almost all vaccines, for sure how these never, they specifically address the flu vaccine and they mentioned that it can be had in a single dose non thimerosal versions.
And given that there’s a connection with tics from the past wasn’t significant, the thimerosal exposure, It would make sense to try to avoid it. Absolutely, OK, good. Just wanted to clarify that.
They appreciate Uh, let me say, ah.
I have a question having to do with your son. And I don’t know if you want to know if you want to take this on because it’s personal, but the question is, how, you know, how old is he now, basically, and has he been tic free and how has all of this really worked for him as an adult.
Right, that’s a good question. He is 40 years old. He has been tic free since college. I will say he went through a little episode of experimenting with alcohol, which did not go well, his tics kind of ramped up then, and then they had them completely under control. He will not eat something with artificial flavors.
And colors, he is very aware that he could have something probably started up if he totally was exposed to a lot of chemicals. It keeps a healthy lifestyle, does not experiment with it, he watches this his sugars. He has a very good job at a university. He’s married, his kids, and it’s all behind to, basically, but he the reason he did that survey for us. And actually, he does a lot of work on my website as a volunteer is, because he knows what he went through.
And he knows the impact that triggers can have.
So fortunately, he did extremely well, and he does not have tics. And it’s not that he outgrew them. We saw some little ups and downs as he went through adolescence, and a college, and then he knows what he has to do to make sure he keeps everything under control. And what was interesting if I can say, I didn’t mean to interrupt you.
But as a school psychologist, I mean, he had obsessions come in that I was just shocked to see and it all went away and the philosophy is really that there is a brain allergy. The nervous system, of course, is connected to the brain. And the inflammation that was causing the tics was also causing.
OCD type behaviors. So all of that went away also, and the anxiety.
You know, you know, in terms of Tourette in terms of this, the standard diagnosis and expectation and so forth set, by the time you get to be through college.
In, in the vast majority of cases that situate the truth, the Tourette’s, the ticking part of it, does tend to modify and then there are those circumstances where it doesn’t. I understand that. So whatever your son situation is, now, do you think, you know, you’re feeling is then it’s a result of the work that you’ve done and he’s done. Is it something where he might have outgrown anyway? I mean, you know, what’s your just your thinking on that?
My thinking that is in his case now that it is not the case that he outgrew it OK and we would go months with no tics and then have a significant exposure that set them off.
So whether he would have had as many tics at 25 if we hadn’t done this as he did at 15. I can’t say. But he’s aware that he has sensitivities still. And I would say this is absolutely not a case that he outgrew it, because we got it under control when he was about 11 years old. Then, except for flare ups. Yeah.
But I understand that, that concept, and you kind of got to like, you have to go through the eye of the needle, you know? To get past that point and you are able and, you know, Again, using your methods, it made a difference much earlier than what it, it would typically reflect, Alright? So tell me about allergy testing.
I mean, does allergy testing help in any way with this situation, or is it just, you know, kind of hit and miss, you just try what you think might work.
Allergy testing, it’s a complicated question because there’s different types of allergy testing and within the field of allergy there are differences of opinion.
And so allergy testing, standard allergy testing, and again I don’t consider myself an expert, I can definitely tell people if they have classic allergy to certain foods, or to pets, or to dust symbols.
And then there’s other types of allergy testing that can be more specific on types of foods. And they can provide a different level of treatment for that. So there’s not one answer for all of that.
Some people, some people do very well just with avoidance, like they figure out the other two, are they already knew. They’re probably allergic to something and other people will benefit greatly from having allergy testing. There’s some so-called integrate of our new agey kind of allergy testing that I don’t necessarily endorse.
But people do energy testing and all types of things that we don’t have a way of judging how accurate it is.
So people have to find out for themselves, if they found a good practitioner and they made progress, that’s a personal experience, really.
I’m going to have a question.
And again, I’d, I’ve never heard of this. So, I’m just going to throw it out here and if you’re not familiar with it, that’s fine to have a question about camel milk.
Yeah. Is that something you have any knowledge of or experience with?
No, and I’m just laughing because I just saw something on it last week and so I just, it caught my eye. I do not. I don’t, I saw the article and I didn’t take time to read it, and I am sorry that I don’t have any input on it, OK? There’s no particle of notes.
Going back to allergy testing, again, is there any evidence or any research that you’re aware of? That would say? For example, if a parent has an allergy to fragrances as an example, would that be a good place to start?
If you were trying to look for a trigger with, you’re a child with tics something that’s already kind of genetically in the mix, maybe. I would say certainly, chemical sensitivities can be passed on.
And, in fact, we tried to get funding for a, so a survey, and it was rejected, and they had a research group that was trying to get the funding to see about whether the parents, if they had chemical sensitivities. Did their kids also have chemical sensitivities or have more of these types of conditions?
So I would say yes, if there’s usually when I talk to a family person, cause in, I want to know, Do they have allergies in the family, Then I wanted to know it just Does anybody in a family have chemical sensitivities because they definitely can kind of front end families that way.
So you’re saying potentially just chemical or would that then apply to other sensitivities as well? I think you just have to look at everything, to be honest, OK.
So, for example, I have, I have chemical sensitivities quite significant to the point that it affects the type of seizure I can have I do not have a lot of food sensitivities, and I do not have regular allergies I passed on to my son.
Whether it’s totally from me or not, some chemical sensitivities, but he also has a lot of allergies, and he had more food intolerance that I did. So there’s no one answer to everything, but I think that, but I don’t enjoy talking to someone who says, no, we don’t have any allergies and the family. We don’t have it because we’re always trying to brainstorm. We don’t have any food sensitivities and now I haven’t changed my house and there’s no walls and we haven’t renovated the house which can sometimes result in chemicals.
So, each case just has to They have to look at their own situation and try to start observing.
OK, all right, we’ve gone quite over, so I have one more question and then we’ll wrap it up there. OK, Yeah! How can a parent manage this triggers situation in school, assuming, of course, that we’re able to zero in on a triggers, so so they’ve figured out something, and then how do they move that then into, however they need to handle it at school?
Well, it would depend on what that trigger was and whether, you know, I think other national organizations do a wonderful job of teaching how to deal with tics at school.
So it’s a trigger, let’s say if a person found that they are triggered by scented products, then they would work with the school staff on eliminating those in the school. Which many schools have done in offices that’s, that’s becoming a common practice.
If they found that there’s a food, you know, that they have to stick to a certain diet, Then I would work with the teacher on saying, Can I get you to give snacks that are healthy snacks, or can I provide you with some snacks when you want to give something to my son? Sometimes parents workout things with parties that they bring in special things for the, for all the kids, or something that their child is happy to have, and not feel left out.
I don’t know if that addresses the issue I’ve seen, for example, what they do in after school snacks, and they’re usually awful.
And if your child stays afterschool and you don’t want them to have that, then you have to talk to them and treated much the way you would for your child’s head.
Know, diabetes, and he wasn’t able to eat certain foods for a child’s head celiac and wasn’t able to have certain foods. Just be very matter of fact about it, that this is something that’s it’s very important for my child.
Does that answer that, That will cover it, yes. Thank you. I think we’re going to end to the Q&A here. We’ve gone over quite a bit. Sheila, thank you for your presentation tonight. I am going to sign off and turn this back over to Kelly for her to do her, wrap up.
OK, thank you.
Thank you for joining us on our webinar, Tourette Syndrome, Help Control Your Tics by Learning What Triggers Them. There is an exit survey, which we would like everyone attending to fill out. The webinar blog is open and available for the next seven days on the NJ CTAS website for any additional questions that were not covered in tonight’s presentation. That website is, WWW dot N J C T S dot org. Also, an archived recording of tonight’s webinar will be posted to our site. Our next presentation, Managing Achievement and Anxiety in Students With Learning Differences, will be presented by doctor Hillary Murphy and is scheduled for May 22nd, 2019. This ends tonight’s webinar. Thank you, Miss the mark for your presentation. And, thank you, everyone, for attending. Goodnight.