Jump to content
ACN Latitudes Forums

How do you know for sure what the trigger is?

Recommended Posts


I am not really sure what I or my family are doing. Exhausted is a feeling that seems normal to us now and we just started researching about tics in December. We are in the process of doctors and diagnosis’ and I am reading the book “Natural Treatments for Tics and Tourette’s “ My son is 9 and started with tics in September of 2017, long story short he went from vocal to excessive eye blinking to stomach spasms to now he has days where he can’t sit up straight or walk without it happening. We are getting a referral to an infectious disease specialist to see if he might have PANDAS. While doing all this we have eliminated his artificial color and flavor, sugars, dairy, gluten. We aren’t perfect still learning the terminology to these items, but we are trying to find triggers.  Are we removing too many things at once? What is a reasonable time frame Between taking things away and then reintroducing them? How long do you wait for a reaction? Will a reaction happen immediately or within a few hours? Do you have to test it out more than once to know for sure it’s a definite trigger?

I have ordered the Failsafe cookbook because we have no clue what to make that doesn’t have any of the afore items I just mentioned above. Please any advice is welcome or organization of what to take away or add, ideas for snacks...etc.

As to environmental, we have always used skin sensitive soap, Johnson’s baby shampoo, I did try a sensitive detergent but he broke out weird I know, but we went back to what we always used. We are going to borrow a friends steam cleaner for the furniture. Any other ideas?

I am only at chapter 8 of the book so if there is a chapter that has the answers to these questions please let me know.

Thank you so much for any help.


Share this post

Link to post
Share on other sites

Hi motherof3, we are glad you wrote and welcome to the Forums. What is the date for your PANDAS evaluation?

It sounds like you have already started some key dietary efforts. Even when PANDAS is involved, it can be helpful to avoid potential triggers as you figure things out. It takes time to get accustomed to different terms, like additives. Just do the best you can at this point and look for foods with simple ingredients.  The Failsafe cookbook will avoid salicylates, which may or may not be an issue for you. 

I raised 3 kids, one with Tourette's, and know you have your hands full. Trying to figure out triggers adds to your stress, I know.

Have you been able to keep a detailed log with what is being eaten and how symptoms are--as well as other exposures? That can be the key, because you can be closing in on some triggers when other issues come in and confuse things on a day to day basis.

You mention sensitivities to a detergent -- it seems an allergic issue could be part of the picture. Is your family allergic -- and has anything changed in the last several months? Like a new location, renovations in the home, different school, new pet, etc?  Steam cleaning furniture that needed it is a good idea (without scented products, as they often use!) 

When looking for triggers, it can be helpful to see a naturopath or doctor who understands this type of approach and is familiar with nutritional approaches that can support the nervous system. It can be difficult to go it alone. Is that a possibility?

Sometimes there is a significant underlying problem, whether an infection or allergic reaction, or nutritional imbalance that is tipping the scale. Could you let us know a little more?

 I apologize for the late response to your note!  I look forward to hearing back from you, Sheila 

Share this post

Link to post
Share on other sites

Hello thank you for responding. Our appointment with the infectious disease specialist is today. To answer some of your questions we are keeping the log and have kept a log since the end of December beginning of January. As to Allergy Testing he did have an allergy test back in 2015due to breaking out in rashes a lot which ended up being major eczema however when I went to look at his records they have not put his allergy test results in his record so I'm in the process of signing release forms and getting those results. We are scheduled for a second opinion at a different hospital just because we want to make sure we're doing everything we can. We have steam cleaned the furniture carpets even our hardwood floors the only thing we haven't done yet mattresses which we are working on getting those steam cleaned.

Nature path I'm not sure if I can find a doctor like that we are waiting to see what these results are and then possibly see if we can get referred to a nutritionalist and maybe an environmentalist physician. We at one point thought he might have a magnesium deficiency and requested that our doctor please test him for this she did and it came back that he was actually over the suggested amount that he should have but extremely minimal the doctor didn't feel that it was a problem. We do know that stress is a definite trigger while testing at school which his school is very aware of everything we're going through right now the teacher noticed that he couldn't seem to control his leg while testing and seemed very frustrated or nervous anxious about the test so they have a secret hand signal in which he can leave the room and doesn't have to ask and he went to the nurse's office and was there for about 20 minutes until he was finally able to calm down and de-stress so we do know stress is a trigger. We are video recording his tic movements and vocals and I have all those on my phone that I keep with me readily for doctor visits. 

I feel I should clarify that I am a mother of 3 however two of my children are in their early twentys and my youngest is 9. I don't want to confuse anyone with my user name or create a misunderstanding. My oldest two never did this. Thank you again for any help and your time.

Share this post

Link to post
Share on other sites

It's great that your son's teacher has developed a secret hand signal for him to leave the room to calm down. And I see your note about two of your kids being in their 20s.

What did the infectious disease specialist say last week?

A national organization had some trigger suggestions for eczema, which you said you were dealing with. It's a good reminder to go natural throughout the the home, not just with personal products.

For the mattress, after you have it cleaned, Amazon carries hypoallergenic covers that can be a help (other stores have them as well). Most comfortable ones have cloth material on the outer layer.

Looking forward to hearing back, Sheila

Share this post

Link to post
Share on other sites

Hi Sheila. Well the infectious disease specialist said that they didn't feel he needed to be tested that within the last five years there have been conclusive studies that tic disorders are not associated with pandas. She felt that he was a healthy boy other than the tic disorder and that she didn't understand why the Peds neurologist would send us there with the studies that have been done. She did notice that we were disappointed in her answer she did encourage us to keep our second opinion appointment with the Peds neurologist in May that we have.

I really don't know what else to say about that visit other than we were frustrated and disappointed.

I will definitely have to look into hypoallergenic sheets I hadn't thought about that before that is a good idea.

Thank you for getting back to me I know you are very busy and appreciate that you took the time.

Share this post

Link to post
Share on other sites


I am sure Sheila will respond as soon as she gets a chance :) but did just want to say that the infectious disease specialist didn't give you accurate information. I am by no means clued up on it,  and don't know what studies they were referring to, but I do know that kids with PANDAS/PANS can and do frequently have tic disorders as part of their symptoms, or as an additional co-morbid condition.

That said, not every kid who exhibits tics has PANDAS/PANS. There are many varied things that can be underlying tic disorders, and they are not all mutually exclusive.

That's why keeping a journal/log is so valuable in trying to find what sets the tics off, and what calms them.

It may really be best, if you feel there might be a chance of PANDAS, or PANS, or at least want to rule it out, to see a specialist who actually knows about this and will run the kinds of tests that are documented. The parents on the PANDAS/PANS forum here might be able to give more info?

I hope that helps a bit till you hear back from Sheila.


Share this post

Link to post
Share on other sites

Thank you for your response, Chemar. I agree with everything you said. It is unfortunate that there is so much misunderstanding and misinformation about this topic. Confusion might be a better term in many cases, and there is not an answer that fits everyone. But most on this forum would agree that the doctor should have pursued it, if nothing more than to rule out a possible connection.  Yes, it could be good to post your situation  on the PANDAS/PANS site on this forum if you have not already done so. Please let us know how everything turns out or if you find new answers. 

Glad you can get mattress dust covers -- they make them for the mattress and for pillows.

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Announcements

    • Administrator

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator


      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010