Sheila

Updated 2020    Suggestions for finding a practitioner

People frequently ask how to find a practitioner who can treat tic disorders along with, or without, standard drugs. It’s a difficult question to answer because there are important factors:

1) The severity and nature of the condition
2) The age of the patient
3) The location and willingness to travel
4) Insurance and financial resources

Also, because alternative research for tic disorders is lacking, most professionals in alternative or integrative health fields have not treated a lot of tic cases.

Sometimes people successfully help themselves or their child through self-education and basic wellness approaches. Others may decide to seek out a chiropractor, naturopath, or homeopath. Biofeedback is sometimes tried. You can search the Internet for a number of referral associations for these practitioners and receive explanations of their disciplines and services. Their backgrounds and training can vary greatly.

ACN has received the most positive feedback on the use of nutritional therapy, diet, and specialized allergy therapy for treating tic disorders including Tourette syndrome.  Avoidance of aggravating agents is key, whether in the diet or the environment. These types of practitioners can be of help to varying degrees depending on the issues involved. 
World Naturopathic Federation; 
The American Academy of Environmental Medicine
American College for the Advancement in Medicine
Functional Medicine
We regret that ACN is not in a position to offer personal referrals for families.

There are no hard and fast rules when looking for help. It is a matter of finding the right match for your situation. Word of mouth may be helpful. The search is often not easy, but it can be well worth the effort in many cases.

I sincerely hope every Forum reader finds the help they are looking for.

Sheila Rogers

Hi Tiara, This must be such a distressing experience. I'm so sorry you are dealing with this in your son!
Has a physician seen him in this condition?  If not, you could take him to an ER and presumably get a consultation with a neurologist and a referral to a movement disorder specialist. 

This is not to say that integrative approaches cannot help him--it's very likely they can--but since it sounds like he is in crisis, he should have a formal evaluation (you may already be doing that!?.)  Do you have health insurance to cover this type of care?  

I have heard of some doctors giving an IV of magnesium in the ER, as is sometimes used to treat a seizure, and it temporarily helps calm severe tics like this, but I am not a doctor and I don't know what is feasible where you are.
As far as encouragement, please know that parents of children with severe tics have often found major help with integrative approaches. But, it can require advice from a professional to determine what imbalances the child is dealing with. It is not always possible for a parent to figure out environmental and diet issues, supplement needs, etc. on their own.  So I would suggest you will need that type of assistance. Do you have practitioners helping you?

We can set up a time to talk if you like, Tiara, and see what your options are. (Do you live in Toledo, Ohio?)

Please let us know more about these issues. Meanwhile, don't despair. We will watch for your response. Sheila 
 
. 
 

 

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms.

Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies."  I mention that just to expand your thinking about allergy. 

I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics.  

I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. 

 
A Checklist for Brainstorming Triggers.pdf

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms.

Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies."  I mention that just to expand your thinking about allergy. 

I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics.  

I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. 

 
A Checklist for Brainstorming Triggers.pdf

Is this happening basically all the time, Swetha? (Yes, we have heard of all these types of tics.) I'm sure it must be very distressing for you. I'm so sorry to read about it.  
Are you in India?  I'm sending an email note to you. 

Also, to jump back --  no, meat is not required to heal a tic disorder. As a general concept, a balanced vegetarian diet is fine. 

 

Swetha, I'm sorry to be so late in replying. I went out of town for several days and am still catching up! I agree with Chemar, that you have done an amazing number of interventions. You are observant and have what it takes to make real progress. In fact, it sounds like you already have. It's great you are cutting out sugars and reducing dairy. It can be hard to know what foods might be involved without trial and error--unless something becomes obvious. Maybe the naturopath could help you with that, if you see one. 

You mentioned you were starting the waring of eyeglasses back up, thinking it might have had something to do with the symptoms. Have you seen a change? There could be visual component, especially since he had tics when reading and watching TV (this is not uncommon.)

You mentioned dust allergy -- have you had a chance to make the bedroom dust-free? (article) A good air purifier in the bedroom can often make a difference.  Could it be possible he also has other sensitivities that you are not aware of.--like to mold?

What is his current "baseline" of tics -- how would you describe the current level to the pre-trip level of tics, before the explosion?

A lot of us can totally relate to him letting the tics out after school! It can be distressing to watch, as a parent. Hopefully as tics keep settling down, he won't have to focus on holding them in. 
You asked about stool testing, that can be helpful for identifying candida as well as bacteria, viruses, or parasites. Does he have digestive problems? 

Please think about chemical exposures in the home or at school, Swetha. Do you have any scented products at home? Air fresheners or incense? And what about scented laundry and cleaning products?  You may have seen enough on the site to have already made changes there. This is an area that is often overlooked as it is natural to focus on food and supplements. Similarly, there could be something at school that he is reacting to. 

We hope you will keep filling us in on progress. I'm not planning to travel again for a while and will keep an eye on this! 
 

That all sounds so good, Jules.  I hope you will please let us know how everything works out. We sure hope you see improvement!  Sheila 

Hi Atex, We have some additional resources that are associated with our book Stop Your Tics by Learning What Triggers Them. 
See here  
Depending on what you are looking for, I think you could find some helpful approaches. Please take a look and see what you think. I'd love to know what you think. 
If you have something else in mind, maybe we could develop it for you and it would no doubt be useful to others. 
I'll look forward to hearing back if you get a chance. Thank you! Sheila 



 
 


 

Hi Irene123, I'm so sorry you and your daughter have been dealing with this for five+ years. I agree it would make sense to consult an experienced naturopath. 
I'll share just a couple of thoughts. I saw your post on PANS (where you said you posted in error and switched to this forum). You mentioned "We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. . . . When we notice something triggers tics, we try to avoid like hairspray and pool chlorine."  It's really good that you have been able to observe that some chemicals are triggering tics and you avoid them. Usually when someone is chemically sensitive, the more you can avoid potentially troublesome items, the better. Also, when something is used frequently, like a body wash or shampoo, it can be hard to know if it is having a negative effect. That's in contrast to getting in a swimming pool and seeing that the pool chemical increased ticcing. I would suggest you try to go unscented with everything in the home, from laundry detergent to dishwasher soap, to personal products. And also use natural cleaning products, like those from 7th Generation. And avoid plug-ins, fabric softener liquid or sheets, etc. 
Also, when it comes to diet, it is possible that she is eating something every day that she is sensitive to. You mentioned eggs and whole wheat, which are common culprits for people with food sensitivities. A naturopath should be able to help identify them or advise you.
One test that is often recommended is from Great Plains Laboratory, which has just recently changed it's name to Mosaic Diagnostics.  https://mosaicdx.com/resource/great-plains-lab-is-now-mosaic-diagnostics/     This test might be very helpful, but needs to be ordered through a practitioner, like a naturopath or a doctor. https://mosaicdx.com/test/ige-food-allergy-test/
(If you already looked into food reactions like that, sorry, I missed it.!) I did see that your daughter has a limited diet because she likes it that way. I know change is difficult, but if she is eating something that is causing a reaction, it's important to address that. 
I hope you will let us know how things are going, especially with the start of the school year. Wishing you the best!! 

Thank you for sharing this, Chemar. What a great reminder for readers to revisit the role of magnesium, which we talk a lot about on this forum.
For some it could mean going back and giving it another try. Or, it could be giving magnesium for the first time. It's great that in the case you mention, there was an immediate calming effect on tics so it was clear it was working.  If giving it a try, give it each day, as it does not stay in the system long. And, start slow in case it could cause more of a laxative effect than you want. 

Hi Sunflower78--welcome to the Forums. You sound like a wonderful mom and all the efforts you have made to stay green, breastfeed and eat clean have no doubt helped your son. 
Please don't assume it was the vaccines or that you did anything wrong. Many, MANY kids have symptoms just like your boy. Sometimes they go away on their own, sometimes it takes extra steps to find the cause and then go from there. You are right that there is no way this could be considered Tourette's (Geez!). 
I apologize that I am out of town and have to get off the computer but will check in soon. Don't despair, there are lots of things that can be done to help your son. Others on the Forum can help also.
Best wishes, Sheila 
 
 
 

Hi Jasmina, Your English is very good and we were happy to hear from you!
It is good to learn that you have found a way to get help for your son. You have made some good starts. I'm sorry not to be able to give you suggestions on amounts of supplements for detox but can say that the amount you are giving of B6 is quite low, nothing to be concerned about; (you can check with your doctor about using more). Some people need to take it with food to avoid stomach upset.  
In addition to the approaches you are using I wanted to mention that it is important to avoid potential triggers that may be affecting him. Triggers include diet and also things in the environment.  We have a book, Stop Your Tics by Learning What Trigger Them -- and it was just translated into Chinese. The concept is that if there is something aggravating his system, it is best if it can be avoided and this will also help other approaches be more beneficial. 
The publisher gave me these two links for the book in case you are interested. I don't know how it works with you being in China and trying to order from Taiwan, but I hope this could be of some help to you (please let us know if you decide to do it):
FROM THE PUBLISHER:
You could find the complex Chinese edition on our official website:https://www.wunan.com.tw/bookdetail?NO=14327
 Or on Books.com.tw:https://www.books.com.tw/products/0010820544  (Books.com.tw is the biggest online bookstore in Taiwan)  
We are looking forward to hearing back from you, Jasmina and hope you can find all the answers your son needs,  Sheila
 

A new scale for parents to rate the severity of obsessive compulsive symptoms and 11 associated neuropsychiatric symptoms (i.e., anxiety, moodiness, sleep disturbance) is in the development phase and available for use.

The current scale is based on the clinical experience of doctors Susan Swedo, Miroslav Kovacevic, Beth Latimer, and James Leckman, with the help of parents Diana Pohlman, Keith Moore, and others.

Instructions to complete and score the scale are included throughout the document.

ACN appreciates that Dr. James Leckman, Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale, has given us permission to share the scale here. We hope it will be helpful to parents.

Click here to view and print the scale.

Hi mlee, and welcome to the forums. I'm sorry that your son has been having some tics. Seeking help from a good naturopathic doctor is a great step to take. I hope you will let us know what foods come up as problematic. That should give you some good direction.  You can also ask this person for suggestions on nutrient supplements.
Charting is also a terrific step, though I know it can seem overwhelming, as you say. It will get easier with time. Keep it up--but also, only take on as much as you can without stressing yourself too much. 
If your son has a problem with gluten-- and not everyone with tics does -- it can take some time for improvement to be seen. I would give it a couple of weeks, and even then do not expect a dramatic change immediately as it can be a gradual change, and there may be other issues going on as well. 
Our organization has a new book out on tracking down triggers for tics. You might find it useful.  Also, I think it would encourage you, because you asked if people are able to get the tics under control, and yes, many do and some of their accounts are in this book. But it can take a comprehensive effort, not just one or two things that usually bring about all the change. 
Have you already had a chance to make other changes in the diet like avoiding artificial colors, flavors and preservatives in food and drink? 
What we have found is that a three-pronged approach can often help:  1) dietary change, 2) avoiding allergens (is your child or immediate family allergic?) and 3) avoiding toxic products typically used in the home like bleach, scented products, pesticides.  
In addition to the above, you want to be sure there is not an underlying infection.
Please get back to us and let us know a little more  and also what the naturopath suggests about the food testing. And you should definitely have hope! You have already taken some very positive steps. 

bernerchiro, this is encouraging! Thanks for the detailed report. I can imagine that a monster truck show would be very stimulating. Please do keep us posted on the nutritionist and anything else that come up.

Hi lbass, I apologize that I just noticed your post. Welcome to the Forums.
I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out?  What was the advice? 
The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing.
Please do let us know.
 
 

Hi argentanya, From what we understand the amount of msg in capsules is quite small. But that doesn't mean it could not cause a reaction. Do you always see the increase shortly after she takes them?
What nutrients is she taking?
You might want to experiment with finding supplements with vegetarian capsules. They are quite common now. Even some gel caps are now in a vegetarian capsule though they are not as easy to find. 
When supplements are in a powdered form, they can often be opened and put into vegetarian capsules like these on Amazon.
Please let us know if any of this makes sense. We could help you find non-gelatin nutrients if you wish!   How has your daughter been doing?

Hi mkwgbennett and welcome to the forums. I was waiting to see if any members had this experience with Zoloft before responding. But it did not surprise me when I saw your note. Zoloft is a drug that has helped many people but can also cause a range of unwanted neurological responses (among other types of potential side effects). It can also require care when weaning off of it. 
Take a look at this list of side effects linked below. It includes convulsions and "muscle spasm or jerking of all extremities."  The incidence of convulsions is considered uncommon and the incidence of the jerking and spasms unknown. But it can happen. The huge list of negative side-effects is pretty sobering.
https://www.drugs.com/sfx/zoloft-side-effects.html
Your child may be among those who have an adverse reaction to Zoloft. What is happening right now? Did the doctor get back in touch and change the approach?  We would like to help in any way we can. Hang in there--you should be able to address this. 

I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job.
Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.

tj21 -- I know this must be so difficult. And first, let me apologize that I have not read your other posts where you may have discussed some of the additional efforts you have going on. Since you already have a functional medicine practitioner who is leading the way, and as Chemar mentioned, there are so many factors that could be involved, I'll just share a couple of thoughts that may or may not be a fit.
It is possible with major immune issues to become hypersensitive to chemicals and allergens. I used to watch kids in the office of an environmental physician and saw a high pitched screeching tic triggered by formaldehyde exposure and a screaming tic triggered by mold exposure, etc. A food can also be behind it. Obviously you have a complex situation but do you think there are any environmental influences that may be playing a subtle role? For this, think in terms of an allergy to the nervous system--something doctors don't usually consider.

Hi JC Mom,
 
I know some members have seen Dr Stack but are not necessarily online. I did a search and came up with some previous links that might be of interest to you. I did not differentiate whether they were positive experiences or not.
 
We have heard from people who found this approach, including with Dr. Stack, very help and others for whom it did not help, even when at first it seemed they would be good candidates.
 
There is a study going on presently, I believe with Dr. Sims. As I understand it, people are responsible for their own transportation and lodging. Sometimes a number of fittings are required.
 
I hope this is some help.
 
Study here
 
Previous threads
 
http://latitudes.org/forums/index.php?showtopic=24651&hl=stack
 
http://latitudes.org/forums/index.php?showtopic=22725&hl=stack
 
http://latitudes.org/forums/index.php?showtopic=22505&hl=stack#entry174278
 
http://latitudes.org/forums/index.php?showtopic=10797&hl=stack
 
http://latitudes.org/forums/index.php?showtopic=21851&hl=stack#entry168588
 
http://latitudes.org/forums/index.php?showtopic=7016&hl=stack

Hi James_S, This clinic should be able to help. Dr Berger is well known and respected in the autism community and I have no idea if there is a significant wait time. Definitely should be able to order the types of tests you are talking about.
 
wholisticfamilycare.com
 
I hope you will please let us know how you make out and what you learn. It''s a good idea to get guidance, as you say. I hope your son has been doing better these last few weeks?
 
And welcome to the Forums! Sheila

Hi jcmom and welcome to the forums!
 
About the magnesium, there is a theory that there could be a magnesium deficiency in tic disorders, though there is not research on it and there are a number of different reasons that kids can have tics. One study was planned but results not published that intended to look at supplementing with magnesium and B6 for Tourette syndrome. The entire discussion of the proposed study is here with the rationale behind it.
 
With food allergies, it is best to try to avoid the items even when they are mild--or at least rotate them, say every 4 days. But for significant allergies you are on the right track, to get them out of the diet. It is good you had him tested. Your allergist should be able to tell you if you can reintroduce wheat occasionally after an extended time off of it.
 
Comments on the gut by others are good. He could probably benefit from a quality probiotic which can help with digestion and potentially improve reactions to foods. And you should reduce sugars as much as you can.
 
Have you had a chance to consider chemicals in the environment in addition to classic allergens? Let us know if you need ideas for that. And hope you will keep us posted.
 
 

Chances are, if you were satisfied with the treatment options that are available for Tourette syndrome and other tic disorders, you wouldn't be on this forum. So many families like you need help finding better therapies than the drugs that are offered. We've written a series of articles calling for an investigation of the Tourette Syndrome Association because for the last 40 years they have ignored information on safer, new directions for treatment while at the same time having a virtual monopoly on information provided to the media. Don't believe me? Click the links below and follow this effort. A 10 PART SERIES ONE Making our case – The first in a series of articles
 
TWO Looking back 40 years
 
THREE There’s a lack of research studies reflecting positive reports received
 
FOUR Dr. Marshall Mandell’s amazing discovery was ignored by the TSA
 
FIVE The TSA ignored the work of Doris Rapp, MD
 
SIX The TSA medical board ignored the findings of the Alternative Therapy Network for Tourette syndrome even while TSA staff referred families to it and success stories with natural treatments were mutually shared.
 
SEVEN The TSA and our organization had a liaison relationship for a few years . . . yet they sought to stifle our message and discourage people from trying natural approaches.
 
EIGHT The TSA has failed to alert the public and medical community that environmental triggers can worsen Tourette syndrome symptoms. Their negligence is indefensible.
 
NINE The TSA has censored and controlled the media message, making it difficult for families and physicians to learn of integrative and natural approaches to Tourette syndrome.
 
TEN This is the final article in a series that has documented the Tourette Syndrome Association’s (TSA) failure to determine the cause of Tourette syndrome and find safe, effective treatments for symptoms.
Please support this very important effort. We need to make sure research goes in the right direction and families learn about better options for treatment. Thank you, Sheila

Hi PhillyKid, it looks like you are making a lot of helpful and practical changes.
 
At what age did your tics start? Do you have allergies?
 
Tourette syndrome can be treated for many people. Sometimes it takes the help of a professional to sort things out and provide treatment. There is not a single approach that helps everyone. Please tell us more about yourself, if you like.