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my2sons

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  1. Like
    my2sons reacted to Jetocurly4 in Anyone find success with digestive enzymes only to see increase in tics after some time?   
    We tried enzymes and bought an expensive brand thinking it would help but it just increased his tics. It was a disaster.
  2. Like
    my2sons reacted to emik in Help! Nothing working for second DS   
    Hi,
     
    Unfortunately I do not have anything else to recommend. One thing I keep a close eye on is the CBIT. We haven't tried it for my daughter so I do not have a first hand experience to share, but I have read a lot about it and to me it sounds promising. It is recomended for children older than 10 years though. I beleive user "mythree" posted about her daughter's positive experience with this type of treatment last year.
     
    We have also introduced Turmeric very recently, a couple of days ago. I am still not sure if it has any positive effects.
     
    Regards,
     
    Amy
  3. Like
    my2sons reacted to Chemar in 23andMe   
    Hi
    Perhaps the parents on our PANS forum can point you to helpful analysis as many of them have had the testing done?
     
    Hopefully someone else here can help too.
  4. Like
    my2sons reacted to Pippi in We eliminated tics with 100% organic diet!   
    My2sons,
    We are vegetarian, so I don't have any experience with organics meats. That's terrible that they are spraying them with gmo during processing, how frustrating!
     
    We have found that we thought that she was sensitive to certain foods. We thought that she couldn't have dairy because she seemed sensitive. We also thought for a while that it was the gluten. Soy seemed to cause her to react. What we have found, is that it is just the pesticides, but not the food. She is so severely sensitive to pesticides, that even if she has a small exposure, she will tic. Fruit of all kinds is a big trigger, especially apples. She also has a huge reaction to potatoes that are non-organic. This includes potato flour in bread for instance. Corn is also a huge trigger. Nuts, as well.
     
    Now she has no food restrictions at all. She can eat anything as long as it is 100% organic. If she accidentally eats anything that is not organic, especially fruit or potatoes, she will tic until it leaves her system, about two weeks. Some foods only cause her tics for about three days. Now that we have been extremely strict about her diet for several months, she seems to be healing and her body reacts less strongly when exposed to pesticides. Last summer her tics were constant and complex. The longest time between tics was less than two seconds. It was terrible. When we were eating mostly organic, we saw very little change. It wasn't until we went 100% until we actually saw a huge difference. It took a long time to realize what things we kept accidentally eating without realizing. Once we bought organic spices, and organic vitamins, etc, we saw that the tics completely went away.
     
    What I realize is that since certain foods are treated with more pesticides than others, we started to think that it was those particular foods that were the trigger. What we found was that it was the pesticides themselves. She eats any kind of fruits, nuts, dairy, corn, eggs, vegetables, etc without reaction.
     
    Also, we noticed a huge difference in her impulse control with no pesticides! I hope this helps!
  5. Like
    my2sons reacted to Familyof5 in tic regression with diet changes   
    Not sure if you meant to write, "mold new tic". My kids will tic in response to increase mold in the house or in their school environment. Xmas time enhances moldiness in homes, due to bringing out all the old decorations that have been stored for a year. Also, wrapping paper has very high levels of mold on it and when you wrap and then rip the paper off the mold spores have a fun time flying through the house and attaching to couches, etc. My kid's tics always increase at Xmas time because of this and also because of all the candy they are sneaking at school and not telling me about. Just a thought if you are sensitive to mold.
  6. Like
    my2sons reacted to bigal in My son has really benefitted from a TMJ mouthpiece . .   
    First some background. My son will be 12 next week. We first noticed tics about 5 years ago. They were generally mild. But have slowly been getting worse over time. Every once in a while he gets awful tics for a week or two. When that happens it's usually a head shake tic, like he is shaking his bangs out of his eyes. The first time they got severe, I was so upset. It thought it was the new status quo. It wasn't. It only lasted about 2.5 weeks. He has had subsequent bad outbreaks, but they haven't lasted as long.
     
    We tried a few things. Guanfacine helped maybe a little. Dietary changes might have helped a bit, but I can't say for sure. Fish oil and magnesium also might have helped a bit. But despite these, things were slowly getting worse. We tried Brain Balance. It was a disappointment for us. They did help his academics a bit. But we weren't there for that. It's a lot of work and his motivation was to lose the tics. It didn't happen.
     
    I don't think that I'm supposed to name doctor's names on this forum (feel free to message me). But if you google Tourette's and TMJ or mouthpiece you will find a website for a Dentist in Virginia. He has some pretty impressive videos on his website. You see people ticking badly and then almost stop on a dime when he inserts a mouthpiece or even just tongue depressors. Apparently there is also a doctor in Maryland and one in California that have a lot of experience with this treatment. The Dentist in Virginia gave me the name of a tmj dentist in Worcester Mass, which is close to my home. That doctor didn't yet have experience, but it was agreed we would try him first. I think he charged me $1300 for the treatment, which is much less than the other doctor's charge.
     
    We got the mouthpiece in mid July. Since my son's tics are intermittent we were not able to see and real changes right away. But my son said that he felt less of an urge. Over time the tics started to slowly lessen. After about two months, it was clear that the treatment had helped quite a bit.
     
    About three weeks ago, my son lost the mouthpiece. The doctor was leaving for a 3.5 week vacation later that week. So we were initially going to rush over there to get a replacement. It was going to cost $650. My son decided not to though. It's been about three weeks now and his tics haven't worsened. It seems that the adjustment to his jaw has stuck, at least for the time being.
     
    I'd say that his tics have been reduced by about 90%. I can certainly go a week without noticing any. Previously I would see at least some tics everyday.
     
    We've been told that orthodontics is in fact the permanent solution. My son has one more baby tooth to lose and we will then get him braces. I've been told it should be about another five months. If in the meantime, if his tics get bad again, then I'll get him another mouthpiece.
     
    I should add that there were some bumps in the road. For instance, he developed an unsightly habit of flicking the mouthpiece in around and out of his mouth. His teacher mentioned that this was not endearing him to the girls in his class. He also lost it once at a restaurant and broke it once.
     
    The mouthpiece has really helped my son a lot. I really think that this is something that most of us with children with Tourette's should explore. Please post questions or message me directly.
     
    Alan
     
  7. Like
    my2sons reacted to Cj60 in eye rolling? help!   
    We also experienced a gradual decrease in tics after establishing dietary changes. Part of that process were occasional rises in tic activity. But we never observed a sustained increase of new tics.
     
    Are your children taking good multivitamins? That was something that brought about a noticeable improvement in our son well after we had initiated the new diet. He had been taking a fairly generic multi as part of the modifications to his diet, but when we switched to a fairly potent one, the improvement was almost immediate. There are threads on this forum that mention different brands of good multis.
     
    Another improvement came when we identified a food item that wasn't agreeing with him (oranges). We had made extensive changes to his diet, and were hyper vigilant about what he ate, but somehow oranges had slipped through the cracks without being noticed. He took his multi every morning with orange juice... When we removed them, ticcing lessened, again almost immediately. I just mention this because even though your sons have a very healthy diet, there might be an item still in there (or recently introduced) that is causing an issue.
     
    Good luck,
     
    Chris
  8. Like
    my2sons reacted to Chemar in eye rolling? help!   
    Eye rolling tics are amongst the most common TS tics.
    Do you have any other family history of TS or tics?
     
    Honestly whenever there has been any strep history, it is always worth investigating PANDAS, just so you can be sure that you have covered all bases
     
    Also, be sure you have your son's eyes examined by a pediatric opthalmologist as sometimes vision problems and corrective lenses can dramatically improve eye rolling, whether or not these are also TS etc related.
  9. Like
    my2sons got a reaction from true2myself in Questions & Help   
    A few words of encouragement...starting this journey can become very overwhelming no matter what direction you go in. But hang in there and stay positive. You can and will help your son. You are on the right path already. There are a ton of people on here with information to share and support to offer.
  10. Like
    my2sons reacted to my2sons in Questions & Help   
    My suggestion would be to find an Environmental physician or a Naturopathic provider to take him to to start with. They can really help you get started on a path that can have many roads. There are some tests they can do to look for vitamin / nutrient deficiencies, food sensitivities, candida, celiac, bacteria, etc.
  11. Like
    my2sons got a reaction from Emik in Gluten Free and Tics   
    We have done gluten and dairy free, also no preservatives or artificial ingredients. It has been 4 months and we have seen 95% improvement in tics.
  12. Like
    my2sons got a reaction from Emik in Gluten Free and Tics   
    Emik, it' s intetesting that your daughters tics began when she turned 9... my son's tics started days after his 9th b -day and so did his cousins. I have also read of others saying this. Hmm. Our progress with diet and tic improvement has been similar to Cara's but maybe slower and more gradual. But my DS is older so he has had more time to create the gut damage so it makes since it would take longer to heal. I read on the Web where a docyor advised a mom that neurological damage caused by gluten intolerance or celiac takes the longest to heal. It can take a year to 2 years to heal...longer if the damage is really bad. We just hit the 4 month mark and we are at about 95% improvement.
  13. Like
    my2sons got a reaction from Pilbara in Gluten Free and Tics   
    We have done gluten and dairy free, also no preservatives or artificial ingredients. It has been 4 months and we have seen 95% improvement in tics.
  14. Like
    my2sons reacted to Chemar in could it be diet alone?   
    Yes, we have had members pass through here who have discovered that dietary modifications/GIT healing was the right treatment for their child.
     
    Not every child that tics is deficient in various supplements. Most of the nutritional supps discussed here are specific to TS rather than to tics caused by other triggers.
  15. Like
    my2sons reacted to logismum in Course of TS   
    If you search Nystatin in the search function there should be a heap of posts on it. With everything i've read on it i decided not to use it but then again i didn't have a Dr helping us that i could get it from anyway. I chose to use a natural/herbal product for my son, I would have liked to try the candida clear by NOW but couldn't get him to take it. We also did and still do pretty much follow a anti candida diet.
     
    My sons worst was really just vocally, The high pitched screaming and very loud "Ah" also yelling "Yes" and "no" and using words out of context etc. Motor wise he never had any complex body movements. We had some light head shaking, reaching out his arm or raising it above his head, Feeling like he had to lick things plus more but none very severe. I really started changing things though within 2 weeks of his tics being very present so i imagine they could of gotten a lot worse. So thankful i found these forums in my searching
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