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Join the Fight to Find Safe and Effective Treatments for Tics

After nearly 50 years of effort and many millions of dollars, major organizations and researchers focused on tic disorders have not found the cause or cure for chronic tic disorders, including Tourette syndrome.

Why? Because they’ve been looking in the wrong direction. Conventional medicine has historically blamed genetics, while recommending strong drugs to subdue tics. That’s not the answer.

A new direction is needed to explain and curb the tic epidemic. We need to focus on the role of the environment and the immune syem, stand focus on integrative approaches that find the actual causes underlying the tics.

Let’s fund research that breaks new ground and leads to safer and more effective approaches to tic disorders that what families have been offered.

Please see how you can help. It’s easy to get involved!

Comments

  1. Shamama
    April 20, 2015 at 4:00 pm

    Dear Sheila,

    I want to share with everyone that we found an alternative treatment that may stop tics but I am not sure if it treats tics completely and also not sure if it works for everyone. Please watch Dr. Brendan Stacks on You tube and also Dr. Anthony Sims.

    Reply
    • Sheila Rogers DeMare, MS
      August 3, 2015 at 9:11 pm

      Hi Shamama, I apologize–I saw your note come in and failed to reply to it. Have you tried the mouth appliance for tics? I know some people report good success with it, others find it is not for them. Tics can come from some so many sources. For those who have a physiological issue in the mouth that responds to correction, this can be really helpful. I’ve seen the YouTube videos and talked to people who have had success and some who haven’t. It’s costly since insurance won’t cover it for tics, but I know some who find it well worth the cost. Please let us know if you have any firsthand experience. And thanks for writing!

      Reply
    • Nancy
      September 8, 2016 at 9:28 pm

      Hi. My son is 23 has a sniffing and blowing issue. He has see. Family Dr and ENT was allergy tested. So frustrated as they say oh it’s just allergies’. No it’s not!!! It’s driving him
      And us nuts! Help in any way appreciated. Has hypnotism ever been used?

      Reply
  2. N.G.
    August 2, 2015 at 10:12 pm

    Hi Sheila
    I just came across your message…my 4 yr old boy has just recently started very bad tics and I’m devastated. ..we are doing everything to help him…cut junk food out completely not that I gave it every day…I have changed his diet. ..he gets worse if excited, tired…I’m waiting to see a neurologist and food allergy testing done on him. Would be so greatful if you had any advice to give me.

    Thanking you N.G

    Reply
    • Sheila Rogers DeMare, MS
      August 3, 2015 at 9:02 pm

      Hi N.G., I’m sorry you are dealing with this, I know it’s so hard, especially with a little one. You’ve done some good things already, and I hope you will let us know how food testing goes. if the tics started up quickly, as it sounds like maybe they did, you should look at whether there is an infection of any kind. Had he been sick? Sore throat? Also try to figure out if anything else changed. I don’t know what his daytime situation is. Does he go to preschool or does he stay home during the day? Please give a little more information. Some people find that magnesium baths (Epson salt) in warm water for 20 minutes or so are calming. Let us know what the neurologist said, also.

      As mentioned above, if the tics started up dramatically you can ask your neurologist to rule out PANDAS or PANS. In this condition, an infection can cause tics and other behaviors.

      Do you have allergies in your family — or does you boy have allergies that you know of?

      Please know that there are many things that can be done to help your son. Try not to despair.

      You might want to go over our Dos and Don’t article for a quick review of some things that might help. Then we can connect more later, OK?

      See our Dos and Dont’s in the Treatment of Tics and Tourette Syndrome: http://latitudes.org/treatment-of-tics-and-tourette-syndrome

      It’s just a quick overview but might give you some ideas. I’ll be watching for your response. Sheila

      Reply
  3. N.G.
    August 4, 2015 at 12:02 am

    Hi Sheila thank you so much for your reply so happy to hear what you think. My son has just finished pre-shool and starts big school in September. I will certainly let you know how he gets on with neurologist and allergy test. Torettes runs in my family my younger brother has it but do not want to label my son with that till he is diagnosed. I notice tics because I saw what my little brother went through…but we went to America on holiday and 4 days after we arrived home Fiac started to shoukder jerk like a hicupp but he did vomit on plain home and since then has had very bad throat infection which led him to have constant sniffles and shoulder shrug and facel expressions with it. The worst was sniffles constant for 5 days then stopped but other tics kept up..tonight scared me as he was shoulder jerking so much he could not relax so put him to bed at 8 and less then 5 mins fast asleep no jerking but I notice different foods set him worse like beans sugar dairy ….I gave both my babies soya as I was allergic to dairy as a baby. Thanks again for reply nice to have some help

    Reply
    • Sheila Rogers DeMare, MS
      August 8, 2015 at 7:55 pm

      N.G., I am out of town but wanted to respond to your information. I’m not a doctor and am sharing based on what is known at this point. The big increase in tics might be linked to the infection you described. You said you are waiting to see a neurologist — if you aren’t getting in to see this person right away, you should consider seeing a pediatrician or other doctor and ask to have the infection diagnosed and treated if appropriate. That could help calm things down as an infection can cause a big increase in tics or set them off. (There’s a condition called PANDAS/PANS that links infection to tics as well as significant behavioral changes.)

      You have noticed food reactions. Please keep a log. At times it may be confusing because there were multiple foods at the same time, or the reaction may not be not clear. But if you keep careful notes, eventually you will see a pattern

      It is interesting that you had food allergies/sensitivities yourself. As you would know, the golden rule to follow for any type of sensitivity–whether chemical, food, or typical allergen–is avoidance. Try to avoid any foods that you suspect are causing problems. You can always add them back in later to test but for now it is best to be safe.

      Of course once you have your food evaluation completed, you will know more. But even if something doesn’t show up as an issue in the food test, yet you see a reaction, you can follow your own observations for now.

      Please be sure to go “all natural” in the home. This is important. You should have received our article http://latitudes.org/10-ways-healthy-home-guide/ that gives some clear guidance on things you can address in the house. This can be helpful. The underlying cause has to be identified, but once a child is reacting with tics, it is good to cover all your bases.

      Is there a chance that Fiac child is being exposed to mold in the home?

      When does school start up? and how is he doing this weekend?

      Please investigate the infection and let us know if the doctor gave an antiviral or antibiotic to help him.

      You mention that your brother experienced tics. Think of it as a hereditary tendency toward allergy or immune problems. Don’t assume that there is a genetic family condition that cannot be helped without medication.

      Will be watching to see how things are going and what else you have learned. Wishing you all the best.

      Reply
  4. N.G
    August 17, 2015 at 7:20 pm

    Hi Sheila, He starts school 31st August, he’s doing really good. We were with the neurologist and she thinks it’s linked to strep throat as you had said to me. He passed full assessment and she doesn’t think it’s Tourette’s, so I go this Wednesday to get bloods done to rule out few things.

    Also he’s to get a swab on his throat and then MRI scan, but that will be end of September. We should know more when bloods and swab are done. I have him on a good food plan. He loves his dinners as he always did. Plus he’s doing so well since the health shop put him on magnesium for his muscles, probiotics and fish oil. The blisters on the back of his tongue are lifting; we are so happy to see a massive change in him in just a month. I gave him Weetabix for two mornings and there was an instant change, he kept opening his mouth with the same expression over and over. I totally forgot he tested allergic to wheat, and its 91% wheat. It took 24 hours to come out of his little body and then it stopped and he’s been great since. I know straight away when he gets the wrong food. I will let you know how his test come back.

    Thanks again

    Chat soon N.G

    Reply
    • Sheila Rogers DeMare, MS
      August 26, 2015 at 7:14 am

      NG, you have done a wonderful job of handling your son’s health issues. By using an integrative approach and getting professional help, you are not left trying to figure everything out by yourself–but at the same time you are a key player in making the needed interventions and changes.

      It’s so helpful you could consult a neurologist and see a practitioner to asses food sensitivities.

      You are really moving in the right direction by tracking down things that are triggering tics in your son. It’s excellent that the supplements of magnesium, probiotics and fish oil are helping. (Just a comment that fish oil works with some kids and others can’t tolerate it well.)

      I hope you are also able to “go green” at home, with natural and unscented cleaning and personal products. You could check in with the school before your son starts next week, to be sure it has been aired out if they painted or put new carpets in over the summer, etc. You will also want to talk to the teacher (which I’m sure you are planning already@) to make sure they cooperate with diet and so you know how they will handle birthday parties and snacks as far as foods he shouldn’t have. I hope you will let us know what you think of the school situation. Of course feeling stress with a new class can make an initial difference all on its own, if your boy is prone to that.

      We will be watching to see how the tests come back from the neurologist. I’m sure other families will be encouraged by the changes you are seeing! Sheila

      Reply
  5. N.G.
    August 24, 2015 at 5:15 am

    Hi Sheila sorry for delay only getting to repost message from last e-mail I will reply my update next… I am actually on my way to neurologist today with him but I told you I took him of junk food and has been really good but got him tested for all foods and they put him on Magnesium medicine for his muscles, probiotic for his throat, and fish oil– and I’m exactly a month free of junk food and 2 weeks on new healthy diet cause he showed up allergic to wheat, yeast, sugar, choc ice cream and any meat to do with pig…he has stopped ticcing; there’s the odd one now and then if he gets something that doesn’t agree with him. The sniffling stopped and I’m so happy, but will let you know how I get on with neurologist. Thank you so much for your advice. Will mention PANDAS to the doctor. You made me happy saying it might be his throat and he also had vomiting bug twice. Thanks again N.G.

    Reply
  6. N.G
    August 27, 2015 at 3:54 am

    Hi Sheila

    Yes I surely do plan on going to school for a chat. But I’m sure it’s not going to be easy. I have few members of my family that I feel think, “Ah, no way food could do this” and I have gotten the same reaction from my doctor. I am very disappointed about this. But had I not taken matters into my own hands, my son would be still be very bad or even worse…

    I took my son to a health shop for allergy testing while I waited to get an appointment with a pediatrician. My doctor basically told me and my husband to ignore the tics, that they will pass. He never referred to my letter that I had brought to him. I rang the office 3 weeks later to see their receptionist had sent it and was told it hadn’t even been sent. I did lose it with them since I was due in to see the doctor. I told him what had happened and that I was not one bit happy. But I brought my son for him to see how bad the tics were. He was so nice and apologized.
    Yesterday I got a phone call from a doctor in the hospital to give me a date on allergy testing.

    So my advice to any parent going through this is to go with your gut feeling and help your child because you don’t always get the help you deserve! And the help you pay for can be very upsetting. I’m very happy that we could help him by going to a health shop and getting him tested. The person there put him on a probiotic, fish oils, and magnesium but [muscle] tested the bottles on him to make sure he was not allergic to the items.

    I also had my 3 yr old daughter and myself tested for allergies at the health shop, and we have all changed our diet so my son does not feel anyway different. We feel great now. I have an appointment for both my children to be tested at the hospital for allergies since my daughter suffers with eczema if she eats certain foods, and I suffer with migraines.

    As babies both of them had soya milk, not dairy. Now they both tested clear for dairy, so we can give them milk in cereal and dairy on toast but both are not allowed any cheese at all. I was allergic to dairy as a baby, that’s why i choose to give my babies soya as newborns. I get results of his blood work today and will e-mail you to let you know how I get on.

    Funny you mentioned if the school had been cleaned because the health shop testing came up that I was to have no scented candles in my house and keeps sprays away if I was cleaning or spraying any perfumes ect…so I’m very careful. Sheila thank you so much for all your emails and help. I look forward to getting them, they really help me.

    Chat soon

    N.G

    Reply
    • Sheila Rogers DeMare, MS
      September 3, 2015 at 9:22 pm

      NG, I’m very curious to know how the future allergy testing comes out. Your frustration in trying to get the help you need is common, unfortunately. But you have taken matters into your own hands and that’s great. So interesting that you were told you are sensitive to chemicals as far as scented products and cleansers. That is such an important area and often overlooked; doctors often don’t know to tell families to “go green”–that it can make a big difference. That will help everyone in the family.

      I’m glad that you and your 3-year old daughter also are changing your diet to avoid items you are sensitive to.

      When will you be talking with the school? And what is the date of the upcoming appointments for your son? Sheila

      Reply
  7. Chuck
    September 3, 2015 at 9:46 am

    Thanks for sharing these comments. This is really helpful in trying to figure out different triggers for tics. Best of luck to you and your family.

    Reply
  8. N.G.
    September 6, 2015 at 2:23 am

    Hi Sheila

    I spoke with my sons teacher she was so nice about it all and will look out for him and will not let him eat anything but what I give him for lunch…She is a lovely teacher and made me feel so mmuch better. I had a video I took of my soon a while back that I could show her so she could see what I was telling her about and understand and know how important it is that he does not get the wrong food.

    So yes, doing great in school. I will know Monday when I get both my little ones tested for allergies in the hospital and will let you know what date and I will be ringing to see what the delay is on getting his mri scan done, and why I have no follow up appointment of neurologist. Very frustrating when you have to chase your doctors–so unfair, but I will keep after them if I have to.

    Thanks again Sheila chat soon

    Reply
    • Sheila Rogers DeMare, MS
      September 11, 2015 at 1:21 pm

      Hello, NG. It’s great that your meeting with your son went so well. I’m sure part of it was your attitude and how you approached this. And I must say it was brilliant of you to take a video of your son that you could privately show her to help make your case, so she could see what could happen if he had foods he was sensitive to. That’s a very good idea I’d never thought of.

      So, Monday is the big day for allergy testing! Good to have that finally so close. It must be quite frustrating, as you say, to have to work so hard to get a follow up appointment with the neurologist and the MRI scan. Hopefully that will be revised very soon!

      Do you have a list of the foods you gave to your son’s teacher that you could share? Not that everyone will have the same issues, but it might give some ideas to readers, if you are inclined to share it.

      Thanks so much for keeping us updated! Sheila

      Reply
  9. N.G.
    September 6, 2015 at 2:24 am

    Thanks Chuck glad to be able to share my story

    Reply
  10. N.G.
    September 12, 2015 at 4:12 am

    Hi Sheila

    We go Tuesday to allergy testing so will let you know how it goes. I rang the neurologist and got talking to the secretary and was told the doctor is away till Thursday and that she would post out results of bloods and swab on the throat that she had done. it’s been very frustrating not even to have a phone call…she said also she would let them know that I haven’t received an appointment for the MRI scan, and I will have to ring again Monday.

    I didn’t give his teacher a list, just told her he was not allowed sweets, jellys, chocolate, etc — basically sugar a big no for him. They have a day on Friday in school where they are allowed a treat so told her I will put his treat in his bag; so I give him popcorn or sesame sticks from the health shop. He loves them and that’s his treats at home. I will give you a list when I get allergy testing done Tuesday. I will have a better idea then. I have tried him back on certain foods like brown bread,beans, tomatoes, ketchup, tux crackers. Strawberry yogurts and tomatoes use to “drive him mad” with tics a month ago, but I was so pleased to see it did not effect him that way again. Obviously I tried them all out at different times. As for junk food I will never try him with that again, as he doesn’t miss it and he will say to me, “Mommy, I’m not jumping anymore cause I’m not having sugar.” It broke my heart that he would have to say this at just 4 years of age, but he understands what it does to him and is aware of what happened and I never want to see him go through that again , especially when I see him doing so well now.

    It’s hard to believe that some foods and sugar can do that to his little body. Scary. I took a video because a lot of my family had not seen my son like that and I needed them to understand what I was talking about. I was glad I did it because he had no tics the day neurologist saw him! She asked me if I had a video. I was so happy to have it to show her.

    As I’m sitting writing this comment my son is sitting beside me. He has a slight tic, like a small hiccup and the only thing I tried him with differently yesterday was beans. So I suspect that is the cause and I won’t give them to him. He has been so good with no tics for 3 weeks, but this has happened exactly 24 hours after I gave him the beans.

    Chat soon Sheila

    Reply
    • Sheila Rogers DeMare, MS
      September 17, 2015 at 12:38 pm

      Hi Naomi, any news from the allergy testing? And I hope your son’s mild tic went away. Please let us know.

      Hopefully the neurologist’s office will have some news for you today. I know it has been so hard to wait.

      Sounds like your teacher should have a good feel for what your boy can and cannot eat. I think showing that video will make her feel more careful about things like letting students share their snacks or lunch, etc.
      When you get a chance I hope you’ll drop a note about how the first weeks of school are going. Sheila

      Reply
  11. N.G.
    September 21, 2015 at 4:17 pm

    Hi Sheila

    Sorry for late reply I don’t seem to get notifications on reply from post so only seeing your reply now.

    My son got on better then I expected. Testing showed he had no allergies at all; showed up clear for wheat, dairy, egg, nuts, beef, pork, and chicken, plus dust mites etc.

    We are just so happy with his progress. Sugar can’t be tested but she said to keep doing what I’m doing, as I know sugar drives him mad.

    My daughter showed allery towards dairy and strawberries, but I had an idea as she suffers with eczema, and both of these can bring it out in her. I have had both my children on soya milk since newborns, and thank God I did as dairy effected us when babies so that is why I choose to give my babies soya formula.

    They drink my fresh juices which is great I do carrot and green juice and they both love it, as they would not be the best at eating veg for me but have to say since they both have come off junk food their appetites are just brilliant and instead of asking me for biscuits they ask for apple, banana, oranges or grapes, so the juicer was worth every penny.

    He is doing very well in school. The teacher says he has great concentration so that makes me very happy.

    I got a date for the MRI–that’s the 11th of December, so won’t hear from Neurologist till he has that done.

    I did get a letter from her saying that the tics were brought on by tonsillitis but did not hear anything more on bloods that he had done. As soon as I do I will let you know.

    Sorry again for the late reply. Thanks Sheila.
    N.G

    Reply
    • Sheila Rogers DeMare, MS
      September 28, 2015 at 1:42 pm

      NG, thank you for keeping us posted. I assume the allergy test was a blood test? It’s always interesting how different tests or approaches to allergies sometimes give different results. As long as you are making good progress with him, that’s what counts. I think the fact that you have cut out junk food has made a big difference. How terrific that he prefers fresh juices to biscuits. And it’s wonderful that he is doing so well in school. With your daughter, it seems you see her sensitivities in her eczema. I hope you can keep that under control. Good you have kept the dairy to a minimum and avoided it when they were babies.

      You must feel so pleased that your son is doing so well in school. The MRI is quite a ways off still. Let’s hope he doesn’t have another bout of tonsillitis. We will be watching for any news on other blood work. Keep up the good work, NG. Now I’m the one who is sorry for this being late! Sheila

      Reply
  12. N.G.
    September 28, 2015 at 5:14 pm

    Hi Sheila

    Great to get your reply. He actually didnt have blood tests done for allergy testing. It’s different, drops were put on his skin on his back, and if after the 20 mins it turns to a red bump it means he’s allergic. None showed up for him but my daughter had 2.

    I think the health shop really helped him, and I think having him on such a strict diet for a month before I got the appointment would have helped him an awful lot, for when he got test done by the hospital.

    I will keep you updated, as soon as I have more information I will be in touch

    Thanks again Sheila

    Reply
    • Sheila Rogers DeMare, MS
      October 2, 2015 at 3:53 pm

      Thanks for the explanation, NG. I’ll be watching for the next step.

      Please be aware that sometimes food testing based on the type of testing you described may not show all the foods your child is sensitive to. Since you monitor his diet and reactions, you should be able to get a good feel for things. As you say also, by having him on a very strict diet for a month, it’s possible he may not have reacted as much as he would have otherwise. Hope you have a good weekend.

      Reply

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