Can Natural Treatments help Alleviate a Chronic Multifocal Tic Disorder?Our original neurologist told us that despite the severity of our son’s condition, because his tics were only present a few short months, we would need to wait a full year from onset to diagnose him with Tourette Syndrome and begin our prescription of Topamax. She advised us to just ignore the tics and do the best we can. In her defense, she claimed that oftentimes tics disappear and don’t return (also known as transient tics). So she was hopeful that we would see a reduction in the behaviors and movements without the need to diagnose or medicate our very young child.
I left the office with such fear and disappointment pumping through my veins. I was unnerved and felt completely helpless. So I fought back by making it my business to read as much as I could about this condition and try to help my son as much as possible before coming back to the neurologist in the summer for our prescription. What happened over those next six months was nothing short of a miracle in my mind, as our son made a slow and steady recovery. We never did make it back to the neurologist’s office, and our son has never been prescribed medication for tics.
Instead, we chose to visit a pediatric physician who practices at the Pfeiffer Treatment Center in Warrenville, IL. This doctor uses much of the protocol developed in the Defeat Autism Now movement.
Our son is now in what I consider remission and is developing normally both physically and mentally. We have a special diet and supplement regime that we have tailored specifically for our son’s needs based on blood, urine, hair, and genetic testing. Much of what we learned has been researched and reported by many doctors and specialists in several areas of medicine and nutrition.
We know that the improvement is from these efforts because we have seen increases in his tics when he has been exposed to his specific triggers, such as gluten or corn, and improvements in his condition after we made these specific changes.
If you would like more information on natural treatments for adults and children suffering from chronic multifocal tic disorders or Tourette Syndrome, check out the following resources:
- Natural Treatments for Tics and Tourette’s: A Patient and Family Guide
by Sheila Rogers. This is a new release. We purchased her original book two years ago and it was instrumental in helping us devise a strategy for our son’s recovery program. - Bontech Supplements by Bonnie Grimaldi (although we no longer use these vitamins because we get a special compounded vitamin for our son) we started on this brand and found it very helpful while we were searching for the causes and cure for our son’s condition.
- Latitudes Online, a publication of the Association for Comprehensive NeuroTherapy. This is an online-based magazine that highlights articles by experts, includes research updates, environmental tips, succcess stories, book reviews, and more. A subscription to Latitudes Online is a great way to stay updated on the latest findings for treating tics. Annual membership costs as little as $40 and includes a synopsis of all the latest journal abstracts available so you don’t have to compile the research yourself.
- Healthy-Family Forum, our own home-grown support group for folks wanting to use special food and supplements to help curb or eliminate their child’s tic disorder. Our forum is specific but certainly not limited to gluten-free diets if you discover your child has another major dietary trigger. It seems like many folks who test for food intolerances find their ticcing child has issues with gluten, and many recent studies have shown a correlation between gluten intolerance and neurological disorders. On the forum we encourage folks using natural treatments and remedies and newbies that are curious about how we do it and what kinds of results we get. This is not a forum for drug therapy or PANDAS treatments, although folks who have tried those treatment protocols without success or find them too risky are welcome to visit our forum to learn about natural alternatives and to consider whether or not they could make a difference in their child’s condition. We do not have medical staff involved in this forum so diagnosis and specific therapy advice is not a part of our group. We welcome any new folks to view our archives for free. Membership is also free, and required for folks who want to post a question or view our private threads.
This article is exactly what I needed to start with in trying to figure out how to help an adult loved one with occasional tics. It is greatly encouraging to know that there are means to help them so they don’t have to tough it out on their own. Your family’s approach to your son’s tics and the steep learning curve that everyone has reached and shared with so many of us are truly inspiring and moving.
yes the love you had to your son is very inspiring. i also want to share this links to you.
http://www.mercola.com/downloads/bonus/Dangers-of-Mercury/report.aspx
http://articles.mercola.com/sites/articles/archive/2003/04/16/latitudes-interview.aspx
if you have time you can read the articles, i hope this could help you. thanks for sharing this article. it really gives a big help especially to those experiencing this problem.
Thanks Mercola,
I agree that mercury poisoning is a very real problem for many kids who tic. Surprisingly, in our case, our son had no heavy metal poisoning. The only element he was high in was copper, which is also dangerous and can cause depression. He was also anemic, which is puzzling to doctors. Unless, of course, they are familiar with celiac disease. Then it makes sense.
I think it is important for parents to get their children tested for heavy metal toxicity, to either rule it out as a possibility or identify it as a possible trigger. Mercury is present in a select few vaccines still (and we were careful not to give any for our son, by the way), and are also present in CFL lights and thermometers. We originally had a real fear that our son had heavy metal poisoning. But surprisingly, in our case, that wasn’t so.
My 17 yr old son hasAsperger’s, OCD, anxiety, a few processing disorders, and started with vocal tics when we had to take him off of Risperdal d/t elevated liver enzymes and A1C, as well as prolactin. He was also on Lexapro. He is now on Clonidine and Zoloft with minimal, if any success. He stared with verbal tics when he got off of the Risperdal that lasted 2 wks. Now 2 mo. later he has had them again for 2 wks – though yesterday and today they have decreased. We have considered going to the Pfieffer treatment center, but in talking to them it sounded like they had not had success with tics. Your story gives me hope! His tics increased when he went up to 200 mg/day of Zoloft so now we have cut him down to 100 mg and the tics seem to be lessening after a week. The dr. was talking of changing him to another antidepressant or putting him on topamax or some other drug. I don’t want him on any! But he was so bad 5 yrs ago we could hardly talk to him because of the constant praying and anxiety.
Hi Debbie,
I can’t really relate with your experience on mood enhancing medications for OCD, tics, and anxiety. I do know of a forum called Braintalk which could be very helpful but the server is being moved at the moment and it is down since March 31. Your son’s tics could be the result of the medication, possibly– but without more than just a research knowledge of medication for tics/OCD I am not much help in that regard.
I will tell you that there are many natural treatment options to boost seratonin naturally in the body. We have utilized many. We have also used supplements that helped stimulate the liver to make it function better.
There are many tests available that can assist you in determining which treatment route you want to take. You also need to find a good support group that knows the ins and outs of drug interactions and natural treatments. I know that sometimes the combinations of natural supps and prescription meds are dangerous when combined.
In your research you will quickly learn that medical doctors know little about holistic approaches and natural treatments. This is not a slight on medical professionals. Many are very willing to try alternatives when they are supported by research and studies.
In our experience the tics were immune related. Our son had undiagnosed celiac and leaky gut issues that seemed to correct itself when we put him on a special diet. It took a long time. Pfeiffer was great for creating a baseline for us to go on. The many lab tests helped us to pin point where we needed to go with treatment. We did do additional tests that they didn’t offer. We have also used Enterolabs with our whole family to determine sibiling risk for Celiac and also to do annual checks on gliadin antibodies in our dxd son to make sure he is in the normal range continually. Great Plains Labs has a series of tests for Tourette Syndrome, Autism, and OCD that check for viral, bacterial, and yeast overgrowth in the gut. They also measure nutrient levels in the urine and test for allergies via blood. There was a holistic approach to healing our son. The combined treatments over a long period of time helped to repair his immune system and put his symptoms into remission. If you would like to speak with someone that has personal experience coming off of Clonidine with her teen son I can refer you to her (with her permission).
Here is a list of threads on different studies related to OCD and Tourettes and issues with digestion:
healthy-family.org/forum/index.php/board,8.0.html
Here is a website that lists most possible drug treatments and their side effects:
tourettestreatment.com/list-of-treatments.php
Tics can be the result of an allergic reaction. Many families report increase in tics during allergic seasons and also after ingesting certain foods. Dairy and Corn are biggies, followed by eggs and wheat. Fungal issues also play a major role in neuro issues. Gluten intolerance/celiac has been linked to Autism, OCD, and to schizophrenia. Pfeiffer has done studies on OCD and schizophrenia and nutrient deficiencies. It makes sense. In these cases the person is nutritionally starved even though they are eating heartily, because the intestines are stripped and so the nutrients do not absorb properly and thus it affects the person’s mood and behavior, and over time can effect the neuro system as well.
Caryn,
Thanks for sharing your story and your countless hours of research to help others! Our story is surprisingly similar to yours. We bought Sheila Rogers’ book several months ago and with the help of an Environmental Physician have finally found answers and relief for our son! We’ve found that gluten, corn, yeast, & tomatoes are major tic triggers for him. When we eliminated these foods and started supplements, we began to see dramatic improvements! I’m still amazed when I think about it.
We love your website! I especially love your product reviews and your recipes. There is nothing more frustrating than driving all the way to Whole Foods, spending a fortune on acceptable foods, spending more time cooking, only to have your family take 2 bites of a meal and to see the rest go down the garbage disposal because nobody liked it. My family has started asking when I make a new recipe if it is a “Caryn recipe.” They know that means it will taste good! We appreciate what you are doing! Keep it up!
The Smiths
My granddaughter, now 8, started excessively clearing her throat at age 5. Last year, she started jumping and blinking her eyes. She does it all her waking hours, there’s never a day that she gets any relief! I feel so bad for her. Her mother is in denial and refuses to do anything. She has taken her to a neurologist, but as I’m sure you were told, there’s no cure. They gave her a prescription for a medicine that the pharmacist told her might cause blindness so she won’t give it to her. She says that I’m the only one it bothers. You have to be deaf, dumb and blind not to hear and see these tics. They are terrible. I watch her every day and it breaks my heart to see her like this. Please help!
Jacqueline,
Without your daughter’s willingness, there isn’t much you can do, unfortunately. You could suggest eliminating dairy and supplementing with Kids Calm magnesium at night for a few weeks to see if she gets any relief at all. Magnesium relaxes muscles and if the diet is high in calcium there may be an imbalance there. Some families get relief just from doing this simple step. For us it was just the tip of the iceberg. We had to go so much further for relief. If your granddaughter does improve a little you can then pursue the idea of testing her for food allergies and vitamin mineral levels in her blood work. You can also test for gut imbalances like fungal overgrowth or bacterial overgrowth. Many of these kids have digestive problems. My son used to burp a lot all day long. Our alternative doctor said that was a red flag for digestive problems.
There are many, many, possible causes for the ticcing and without proper testing the treatments you try are really only going to be doing guess work at best. But a little relief after a couple simple changes may be enough to convince your daughter and granddaughter that it is worth looking into. I understand your daughter’s position, too, to a point. She probably needs to feel that you love and accept her daughter just the way she is, tics and all, without trying to ‘fix’ her. Not all kids get cured. But the alternative treatments to alleviate symptoms quite a bit for many. I was told by the neurologist to ‘ignore’ the tics too. So you have to understand that conventional medicine tells patients and their parents this. It is very hard for a person to reach out past conventional medicine to try alternative treatments because the doctors generally make you feel like a fool for considering it. I mentioned using vitamins and magnesium to my neurologist and she said it would not hurt my son in the least bit but that it would do nothing to cure him. That’s not encouragement, on the contrary, it does more to convince you not to try. The best kind of doctor to seek out is a DAN doctor (Defeat Autism Now). They are conventional doctors who have additional training in alternative medicine and are willing to do holistic testing and natural treatments. That is the route we took.
Our son started ticcing in 2007, and after changing his diet and using natural treatments to heal his gut it took 1 1/2 years before the symptoms went away completely. He last ticced while in kindergarten. He is now going into 3rd grade this fall. We eat as organic as possible with him, gluten free, low sugar, no artificial colors or preservatives, and plenty of water. He does not drink pop or eat anything with high fructose corn syrup. And he’s really pretty happy with the way things are. Oh, and we no longer see that neurologist at all ;>)
Dear Caryn,
I can’t tell you how thrilling it is to find this article. My daughter, age 6, has been having progressively worsening tics since early winter of this year. I could write her story, but it is actually about exactly what you have written above regarding your son. The details of similarity are stunning to me but you’re probably not surprised… sniffling/clearing throat was first (also missed as a tic) and quickly progressed to be multifocal, which it still is currently. I also received the same stories with the doctors that everyone receives. She is also gluten and corn intolerant. I have always believed in alternative medicine and have had them (my 4 yo son also, with Chronic Lyme) in an excellent set of alternative practitioners for about a year. The tics progressed to her jumping up and down repeatedly to where she couldn’t perform many simple duties without much frustration. I recently had a nurse of a specialty field explain the brown ring around her otherwise beautiful green eyes is not a good sign!
I know we are on the right track – exploring things that come to mind, food sensitivities, vitamin deficiencies, regular adjustments, etc. They take Kid’s Calm Multi and Natural Calm as well as a host of other supplements as needed. I am going to request a heavy metal test at her next appointment and was thinking of exploring the DAN Doctor option, but I was wondering if you could recommend any other steps right away that were maybe a bit of a “breakthrough” during your son’s care. If we don’t have to see another doctor, especially with the potential of travelling, it would be helpful since there is a lot of doctor seeing in our house lately.
Thank you so much for anything you can offer! Your note about not seeing a complete change for 1 ½ years is also helpful to know that the right track can still take plenty of time.
Amanda,
The tics can be a direct result of Lyme disease, too….. Has your daughter been tested, treated for Lyme? I don’t know much about the Lyme treatment protocol, but do understand that the ticcing is only a manifestation of various systemic problems in the body. The causes can differ as much as the treatments do. A systemic fungal infection (candidiasis) will cause similar ticcing symptoms, for example, but will worsen with antibiotic treatment, whereas they will lesson with a child suffering from Lyme induced ticcing. There was a dissertation written that supports the idea that tic disorders are an autoimmune reaction in the body. Thanks for sharing and keep us updated on what you learn! BTW, we are still 100% tic free over here and still managing his condition with diet and supplements.
Caryn
This is my story…My 5-year-old son’s tics started over a year ago. Head jerking and eye blinking were the most common. I took him to the pediatrician and was told that temporary tics are very common in children and that he will most likely grow out of it. A few months ago, his head jerking started to subside but was replaced with throat clearing and an occasion “squeaking” sound he would make. Some days alot (once per minute) some days periodically (once per five-ten minutes). Then, when we were in Mexico last month he started making the noises so loudly and regularly that we new, as any parent intuitively would, it wasn’t “just a temporary tic” and as soon as we returned to the states I made an appointment for him to see a Pediatric Neurologist. That was on February 29th and I was told that he couldn’t be seen until April 2nd…which felt like an eternity. And this is where our journey began.
I couldn’t just sit around and wait for his appointment so, like many of you I’m sure, I googled “children with tics” and the term Tourettes popped up everywhere. I remember feeling like I just wanted to cry. I read story after story and watched video after video of children with Ethan’s exact symptoms who were diagnosed with Tourettes. While at the same time…trying to understand what exactly Tourettes is. Which, if you’ve researched it you, too, probably found that no one really knows what causes it or how to treat it. Turns out that Tourettes is just a label for a mysterious condition…and for some reason that gave me hope and sent me on my mission to help Ethan on my own.
I then came across some stories from parents who believed that their children’s tics were related to food allergies and many of them swore by a book called “Natural Treatments for Tics and Tourettes”. If you go to Amazon and read the comments it will amaze you. It was an “ah ha” moment for me and I ordered the book that day.
I received the book on March 13th, made an appointment with a food allergist on March 14th and on March 16th decided to experiment on my own (appt with food allergist wasn’t for another week) and I removed dairy and artificial additives from Ethan’s diet. By March 19th, only 3 days later, his tics were 80% gone. It was the first time in a year he had gone for more than 10 minutes without a tic. Today is March 22nd and he’s at 90%. His dad and I can’t believe it. Just like that, gone! All because of what he was eating? Why did I have to dig so deep to find the connection between tics and food allergies. I can’t help but wonder if parents of children with “Tourettes” have exhausted the possibility of it being food related–has anyone even told them to try?? Anyway, Ethan’s scratch test at the allergist’s was inconclusive so we’re scheduled to do a blood test this week and results will take 10 days–I will for surely post the results. Parents–don’t bother with the scratch test…and don’t let the doctor try to talk you into it–it was uncomfortable for Ethan and a waste of time in the end. The blood test or “intradermal” test is far more conclusive. We will still go to see the Neurologist on 4/2 regardless of Ethan’s improvement.
I know that we are only on day 4 and a big part of me fears that this is too good to be true and that the tics will resurface again but at the same time I also feel very empowered and hopeful…and I will continue on this mission for as long as it takes. If you want to email me with questions regarding the success we’re having email tb_shaw [at] comcast.net.
I guess there is no pill to sell, so our doctors are not educated about such a mysterious methods of treatment…
Also you might find helpful info on our forum: Anti-fungal Diet for Tics, Tourette Syndrome, and ASD. There is private board “Updates on our Kids” accessible only to registered forum members.
What a great forum to find. My son, who has just turned 5, story sounds just like Caryn’s boy – almost identical. I have just ordered the book that everyone is talking about and waiting to see an allergy specialist, and also for blood test results. I just have a few questions in the meatime and I’m hoping this is the place where I will find some answers.
I live rurally in New Zealand, where the housing standards are very poor and damp. The houses here are heated by woodburners, and alot of our neighbours use coal instead of wood for heat. I am positive the coal dust (which leaches out mercury) is very bad for my son and wondering if anyone has any information on using a hepa filter can recommend any other air filter that I should research to purchase for my home. Unfortunately we cannot stop burning wood to heat our house, but hopefully there is a way to make the air inside cleaner for him. I notice his symptoms are always much worse in march, which is the beginning of autumn when everyone begins to light their fires for heat.
I was also wondering which probiotics are the best for children with tics. I have had little help from the health stores here, and there is an overwhelming amount on the interenet for me to sort through. Therelac seems to be the one??
And also… any thoughts on nystatin? Has anyone tried it?
And one more question – what about colostrum chewables?
Hopefully this thread is not too old, I couldn’t see any dates. I am desperate for any information. As I said we live very rurally, so my only resource is the internet. The forums seem to be the place to be.
Thanks again
Kristen
Kristen, Caryn seems to keep up to date on this site, so that is very nice.
I can only comment on your note about the mercury. In my research for my daughter’s issues, there were many, many indications of tics resulting from a high amount of metal in our bodies. Especially aluminum and mercury.
I didn’t end up getting this checked out yet for my daughter since it’s not covered by our insurance. Diet alteration has been the biggest helps, but it’s not always everything. Hopefully you can pursue this route with more research! Best wishes.
Hi Kristen,
If you believe your son has an imbalance in his gut flora, try getting in touch with Dr. Rodney Ford, a pediatric gastroenterologist in Christchurch, NZ. He specializes in gluten intolerance issues and may have insights on probiotics, etc…. that you can find locally. We used Kirkman Labs Pro Bio Gold. http://kirkmanlabs.com/ProductKirkman/186/1/Pro-BioGoldand-Hypoallergenic/
But it won’t stay potent en transit to NZ, I would think. You can make your own with goat milk, too. The trick is to make sure he’s getting a large enough dose. If there is candida, you can use Candex instead of nystatin. We did that with our doctor. We did too high of a dose initially and he got swollen glands from it. So be sure to get lab work done and record symptoms as you treat him. If you live in a damp environment you may see this as a reoccurring issue seasonally.
From all the research I have done I’ve learned that the ticcing is mainly due to a sulfation system weakness in the body. Your son may have an autoimmune disorder you are unaware of, or unknown food allergies. You could try supplementing with NAC (n-acetyl cysteine) a supplement that helps the body create glutatione which will help the body clear toxins and get rid of free radicals. We’ve used it on and off. Our son is doing really well. He’s now 9, and sticks to a very healthy gluten free diet. We eat mainly low carb and low sugar. We aren’t religious about it anymore because he has maintained his wellness for almost 4 years. But it is a lifestyle choice. Our house has also been improved. We remodeled our basement due to flood damage and installed a trench to drain water. We also took out carpeting and installed hardwood flooring in nearly every room. We installed new windows with tighter sealants. Our son does have mild seasonal allergies from the environment but he remains tic free. I believe a low grain diet that avoids artificial colors, flavors, and preservatives is crucial. So is being sugar free. (There is a candy company in South Africa that makes sugar free candies we like, too. http://www.caringcandies.co.za/contact.htm
I can’t speak about using a hepa filter. We’ve never tried that. We do have a fireplace and burn wood but we have a natural gas furnace too.
Best wishes.
Caryn
Hi Mena
I am definitely going to look into the heavy metal – we are surrounded by gold mines and I’m SURE it has to be bad for my family. I’m not sure how because we are not covered either, but if you like I can keep you up to date on any information I find on it. It would be great if you could do the same if you end up looking further into it.
Cheers
Kristen
Also Caryn thank you so much for the information. Your name comes up all over the place during my google searches! I have made an appointment with Rodney Ford on the 10th, I’m hoping for some great assistance for him (fingers crossed!). I can’t remember if I mentioned above, but did you ever try a colostrum supplement with your son?
Thanks again
Kristen