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.

Hi Giovanni, Welcome to the Forums. I'm glad you wrote, but am so sorry to read about your difficulties.
 
Where do you live? And over the years, have you ever been able to notice anything that made your tics worse? That would help give us some clue. Please write back, we will watch for a reply. Sheila

Hi mcturro,
 
It's quite frustrating when doctors insist that allergies can't be involved with tics. They are following the lead they take from conventional medical sources. Unfortunately, the medical community in general, and the Tourette Syndrome Association (which recently changed its name to Tourette Association of America) in particular, has failed to look into this, despite many reports from physicians and the public that link the two, and research that points in that direction.
 
An identical twin study supported the role of the environment in Tourette's many years ago, but unfortunately there has been a real failure of the medical community to explore this important issue. The long-standing message given to the public and physicians that TS is solely genetic is now giving way to more focus on environmental factors. But the progress is very slow.
 
You've really been through a lot already, going from doc to doc and ruling out PANDAS/PANS. Now you need to find answers.
 
We don't know what percentage of people have traditional allergies (like grass allergy, mold allergy, milk allergy) that are affecting tics, nor what percentage have sensitivities to a wide range of other agents that don't fall under the category of traditional allergens. Toxins also have the potential to affect tics.
 
Your pediatrician might say the same thing about pesticides as he did about allergy just because he hasn't read a study about it. Yet it is such common sense that most pesticides function as neurotoxins and directly impact the nervous system with the potential to cause tics, tremors, seizures, and more. .
Resourceful parents like you are left to forge a way on your own! Thankfully you have the motivation and open-mindedness to do so.
 
Yes, thankfully some people appear to outgrow their Tourette's. Many people also outgrow traditional allergies (and food reactions, as Wombat pointed out). Yet at the same time, some have allergies that surface as adults after not being troubled previously, and some adults develop Tourette's for the first time in the their later years.
 
As you would know, allergic response can depend in part on what part of the country one lives in at a particular time, whether someone moved from a clean house to a moldy house; there are so many factors that aren't on people's radar when they find that tics or allergies are getting better or worse. Hormones can play a role as well. One major exposure to a toxic substance can render a person hypersensitive to low levels of exposures.It can be very individualized, and not easy to sort out.
 
Dr. Doris Rapp released an excellent book a few decades ago called Is This Your Child? which had a subtitle about discovering and treating unrecognized allergies in children. She was the first to widely promote the concept that children could be reacting in a negative manner--both in behavior and in academics--to foods and allergens/chemicals in the environment. Dr. Rapp included symptoms of Tourette syndrome in her findings.
 
When parents--and doctors such as the two you went to--don't "recognize" that there is a potential for a connection to tics and allergies/toxins/foods, then they don't look for the connection nor do they ask families about any connections they may have observed on their own. And worse, they often discourage parents from looking for a link between tics and environmental exposures by telling them it is a waste of time. Meanwhile these doctors have no helpful answers to give when it comes to tics.
 
We never say that everyone with tics or Tourette's has allergies. But we do know that for many people, there is an important connection that should be looked into--and that learning about this can be very helpful in treating the symptoms of Tourette's and avoiding exposures that can aggravate the symptoms. If there is no connection, then so be it. But if there is, learning of it is a real godsend.
 
You could share these article summaries with your pediatrician since you said he likes to read. The first was a small study, the second was large.
Association of Tourette syndrome and obsessive-compulsive disorder with allergic diseases in children and adolescents: a preliminary study
RESULTS: While only one-fifth of the control subjects had allergic diseases, more than half of the children with TS and/or OCD had comorbid allergic diseases. Positive skin prick tests were greater in OCD patients compared to control subjects. There were no significant differences between the groups in terms of eosinophil counts or IgE levels. Among the allergic diseases, while allergic rhinitis was diagnosed at significantly higher rates in TS patients, eczema was significantly higher in OCD patients compared to control subject. CONCLUSIONS: This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined.
 
Here's another one:
Correlation of Tourette syndrome and allergic disease: nationwide population-based case-control study.

CONCLUSIONS: Our data showed significant correlation between allergic diseases and TS. Risk also increased with number of allergic comorbidities and with age. Further studies on the mechanism of neuroimmunology of TS are required.
 
- - - - - - -
 
Hang in there and please don't feel lost. (You can feel overwhelmed though, we all did in your situation ) And don't feel hopeless. With the right doctor you can move in different directions and find more answers. The professionals you have been to simply couldn't help you. But there is much help to be had.
 
 
Do you want to tell us more about your child? .

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.