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Chemar

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  1. Like
    Chemar got a reaction from jollyjumper731 in Mumbling swear words   
    Hi
    I do understand how you are feeling as my son went through a bout of coprolalia (cussing/swearing) tics when he was 10 and it was hard for him as well as for us (he does have a Tourette diagnosis, genetic from his Dad's side) Coprolalia is recognized as a vocal tic in Tourette Syndrome.
    All TS tics are involuntary, so that makes the struggle when dealing with "socially unacceptable" tics even harder, especially as often having people notice or comment makes the tic even harder to suppress. My son had Cognitive Behavioral Therapy, and that really helped as he was able to learn ways to substitute words or say the bad ones under his breath. A good CBT therapist can really help tremendously...but it was our experience that it's best to have someone who understand TS
    He is 30 now and living a productive life so please know there is hope, even after the multitude of assorted tics that have waxed and waned over the years. Things were at their worst for him when neurologists and psychiatrist put him on those very strong prescription drugs, so just do be informed before you accept prescriptions from the  doctors etc you are planning to see. I know not everyone reacts negatively to the meds, but when they do, it can be long lasting and very seriously detrimental.
    We found tremendous help by addressing his diet, environment, allergies etc and supplementing with nutrients he needed. We also used a number of other alternative treatments that made a very positive impact. I have an old thread that gives some info on what we did to help him
    https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/
    I would also encourage you to look at the section on the ACN/Latitudes website on TS tics https://latitudes.org/conditions/what-is-tourette-syndrome/ 
    Also the very helpful resource books by Sheila Rogers on natural treatments for tics/Tourette and learning what triggers tics
    https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/
    https://latitudes.org/store/tourette-syndrome-triggers-book/
    I hope this helps a bit, and that you will be encouraged in knowing things can get better and there is much reason  for hope!
     
     
     
  2. Like
    Chemar reacted to Sunflower78 in New and heartbroken , can anyone talk to me?   
    Soo. I don't know what to think. I guess it was positive.
    The doctor we saw is a director of movement disorders at neurology department of National Children's hospital in DC and has 41 years of experience.  I guess he's seen it all.
    He did neuro exam, said my baby is perfectly healthy. Said his tics are a 2 out of 10. He sees this every day all day. Said the next few weeks will be most interesting  as they could start winding down and taper off. Said he didn't have a crystal ball and every child is different.  But 15 percent of kids have tics. Said transient can definitely be both vocal and motor. Also mentioned they could go away and then rear it's ugly head in puberty. But at the end said 80 percent of kids with tics do not have them at age 18, which should be encouraging. 
    I have a blood order for chemistry,  cbc, thyroid and some other stuff.
    He said wait and watch approach is a way to go and would not medicate my baby( good) unless tics are very bothersome to HIM
    Said magnesium supplements are a good idea.
  3. Like
    Chemar reacted to Sunflower78 in New and heartbroken , can anyone talk to me?   
    Yes, all the info I could find is on thimerosal.  I always declined flu shots . He never had one.
    He had a good day today, fishing and playing. 
    I'm still a mess, but at least I sleep better now.
    Our neuro appointment is on Thursday.  I agree, from what I read on here, many neurologists are not so good and push meds right away. I made appointments with 3 different pedi neuros at 3 different places.( husband thinks overkill, but at least I feel like I am doing all I can to find the best one).
    I will let you guys know, what he says. 
    Thank you so much for checking on us!!!

  4. Like
    Chemar got a reaction from cmontgom in Tics and use of essential oils?   
    Just do remember that Essential Oils are concentrated and not all brands can be applied to the skin without use of a carrier oil. When used neat, one drop is totally enough! and even then it depends on the individual. Some people cannot tolerate all oils. ie they will react ok with one and very negatively with another. My son has always been that way.
    Just because something is natural  doesn't always mean it doesn't have a potential for reactivity. We learned that the hard way and with much trial and error.
    It's the same with supplements....they are excellent and beneficial - but different people have different reactions.
  5. Like
    Chemar got a reaction from Cristo-Krista in Tics After Neck Injury & Antibiotics   
    Have you done any probiotic treatment? Or tested for Candida albicans "yeast" overgrowth in the gut?
    I am not suggesting it will fully resolve your son's tics, but when we take antibiotics, they kill off all the "good" bacteria too and that can often create a favorable environment for Candida, which does cause tics in some people.
    Also, have you had your child evaluated by a NUCCA or Atlas Orthogonal chiro since the neck injury. They specialize in neck injuries and I do know of tics that have resolved after readjustment. Please note these are not regular chiros but highly specialized for cervical vertabrae readjustment of the neck.
  6. Like
    Chemar got a reaction from Cristo-Krista in My son doesn’t fit into any tic disorder categories - help!   
    Hi
    I think perhaps you are referring to B12 not B6? For B12 the methyl form is better than the cyano form
  7. Like
    Chemar got a reaction from Cristo-Krista in My son doesn’t fit into any tic disorder categories - help!   
    Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he  was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including  chemical perfumed/fragranced items etc
    I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other  artificial food additives.
     
  8. Like
    Chemar got a reaction from Cristo-Krista in Detox besides epsom salt bath?   
    Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available.
    Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
     
     
     
  9. Like
    Chemar reacted to Sunflower78 in New and heartbroken , can anyone talk to me?   
    Thank you both for your kind words. This feels so lonely. 
    We have a neuro appointment on 15th, but who knows what they tell us. It seems nobody really knows much about tics and first advice is wait and watch. Sigh.
    I am taking him to the zoo today to try and forget for a while.
    I bought the book already!
  10. Like
    Chemar got a reaction from Sunflower78 in New and heartbroken , can anyone talk to me?   
    Hi Sunflower78
    So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many things we learned here made such a difference in helping to manage his tics.
    I do think your pediatrician may be way too quick to say Tourettes! Unfortunately many mainstream physicians really are not keeping up with so much info that is around about other possible tic triggers.
    I am at work so I can only do a quick reply now, but I would greatly encourage you to just start reading up on as much info here as possible and also on the main ACN/Latitudes website https://latitudes.org/
    Sheila's books and articles have been a tremendous help to so many as well!
     
  11. Like
    Chemar got a reaction from Cristo-Krista in My son doesn’t fit into any tic disorder categories - help!   
    We found the best B6 to use was the activated P-5-P form.
    European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!
     
  12. Like
    Chemar reacted to Sheila in Help form China   
    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
     
  13. Like
    Chemar reacted to MAMA3 in Tics and use of essential oils?   
    Hello, 
    This is my first time on here. Chris is my husband & I wanted to give an update on our son. He is now 9 years old & I'm happy to say his tics are now under control, with only occasional motor tics. We are so thankful for sites like this. Otherwise we would have never known to restrict his diet & try essential oils. I have several friends who have reached out after my recent post on social media & they are also seeing positive results with changing diet & applying essential oils. I spend much more time at the grocery store checking labels on anything that is processed foods. I buy mostly fresh fruits, vegetables & all natural meats. We can always tell if our son eats something that is not within his diet. His tics are almost instantly much more visible & it takes a few days to get him back to normal. We are so thankful everyday to have our happy go lucky son back. We know that he may always have tics, but it’s so reassuring to know that it is controllable with something as simple as diet changes & his daily half tablet of  Guanfacine. I have said from the beginning I will always make sure he has a normal, happy life, no matter what. It is possible. My son is a reminder everyday. 
  14. Like
    Chemar got a reaction from tictictoc in Possible PANS/PANDAS or Tourette's   
    Hi there
    I just wanted to welcome you to the forum tho sorry for your child's struggles.
    Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS
  15. Thanks
    Chemar got a reaction from rickysmom in alternatives when antibiotics make kid feel crummy   
    Hi
    My son with TS/Crohn's had abx sensitivity and we found Olive Leaf Extract, Monolaurin (Lauric Acid), Oil Of Oregano (capsules) and other natural antimicrobials very helpful, including dietary garlic, honey etc.
    I don't have experience with these and PANDAS
     
  16. Like
    Chemar got a reaction from Suerexhouse in Did eliminating certain foods reduce tics?   
    Hi Claire,
     
    although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine.
     
    He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.
  17. Like
    Chemar got a reaction from jep1978 in Separating PANS from Lyme/Bart   
    Hi
    Just bumping your first post up for others to see and respond
  18. Like
    Chemar got a reaction from jmacja in Cleaning brands?   
    Hi
    Sorry you have not had any replies.
    We use Seventh Generation products and I make a lot of my own household products with them, along with Greenwise bleach alternative and essential oils.
    Eliminating chemical products definitely helped with both tics and OCD & general neurology
  19. Like
    Chemar got a reaction from ssonheim in Onset   
    Yes, we had been using many alternative things as it was clear something was not right with my son. He was already seeing a naturopath and homeopath, but we had not yet formulated any fixed plan as were mainly doing various testing. He was on some homeopathic drops and pillules. His exacerbation happened just bf Christmas 1999, shortly after his 10th b'day.
     
    We were very against getting medications when the TS/OCD dx came in early 2000, as we have always been holistic in our health perspective, but sadly, when things were eventually so very severe for my son after more exacerbations, the combo of the school, the neurologist, psychologist and psychiatrist scared and bullied me and dh, and persuaded my then 11yo that it was the only way he could have any quality of life so the year of the medication nightmare began.....ugh, I still struggle to think back on that year
     
    I thankfully found a copy of Latitudes magazine at a friend's house in late 2001, when my son was in severe withdrawal from the meds, even tho under physician care. I learned from there about Bonnie's plan for her child (long before she had Bontech supps) and I found her then yahoo page with her supplement list. Took it to our naturopath and the rest is history...things kept getting better even tho we still have had the ups and downs that living with neuro and autoimmune illness brings. The Crohn's threw us a curveball (symptoms began in 2004 but correct dx only in 2006) Son has always had digestive probs tho, since infanthood, and one of his early dx from the naturopath was "leaky gut syndrome" and candida overgrowth, along with Epstein Barr virus.
     
     
     
    quote in my signature says it all: "When Life brings you to your knees...you're in a good position to pray!"
     
    honestly, God alone knows the mess I really was inside. I was totally terrified and felt hopeless for my son's future. Only one thing got me through that time. Prayer. I know I found that Latitudes magazine as an answer to prayer that day. I had been begging God to show me the way to help my son.....and I was finding it in those pages.......I eventually joined the forum to share the success we were seeing as a way to "pay it forward", and that is why I am still here
  20. Like
    Chemar got a reaction from tj21 in L-Carnitine Dose for Teen?   
    Hi
    We noticed an almost immediate improvement for the vocal tics when we started L-carnitine.
    However we were advised to not go above 500mg per day even though my son was adult weight & a young teen then
  21. Like
    Chemar got a reaction from tj21 in LOUD Yelling Tic in DS17   
    Hi
    I replied to your post on the TS/tics forum
  22. Like
    Chemar got a reaction from tj21 in LOUD Yelling Tic in DS17   
    Hi
    I am hesitant to comment when there is PANS involved as there are so many variables included then....but when my son had loud yelling tics, l-carnitine was very helpful.
    We also always found acupuncture, Epsom Salts baths & Bach's Rescue Remedy helpful when any tics ramped up
  23. Like
    Chemar got a reaction from fluxvi0lin in Magnesium from Natural Foods vs. Supplements   
    This is the Thorne Multi my son prefers https://www.thorne.com/products/dp/basic-nutrients-iii-without-copper-and-iron
    He doesn't take this in place of magnesium, but rather due to it's comprehensive supply of the basics, especially the Bs, minus the copper & iron which he doesn't tolerate well.
    He still gets high magnesium via his diet and transdermal epsom salts (magnesium sulfate)
    The decision to reduce supplements in favor of foods was one he made as he got older. He still takes additional supplements as needed for his specific requirements.
  24. Like
    Chemar reacted to fluxvi0lin in Magnesium from Natural Foods vs. Supplements   
    Hi Chemar,
     
    Thanks so much for the response, and the resource, glad to hear that your son is able to manage without the use of meds! It seems that a well maintained diet is a good basis for reducing symptoms. I recently got a blood test from my doctor to see what i'm deficient in (i was interested in the magnesium levels, and b vitamin counts), but I recently read that a simple test isn't an accurate method of determinng true magnesium levels. A few articles I read claming that a RBC serum test (Red blood cell serum test) is the best way to determine how much magnesium actually is stored in your cells. It's a fairly common test, so i think it would be good to see where i currently stand. The reason being that I've also read that too much magnesium intake can cause harmful affects to your liver, so i wanted to be cautious.
     
    I'm thinking that I will start off with a chelated magnesium supplement / natural foods magnesium dosage along with either a B complex or just B6 supplement and see where that goes. I've also cut processed sugars and aspartame from my diet to see if that has any effects.
     
    Will update you to see how that goes.
     
    Thanks again for your advice!
  25. Like
    Chemar got a reaction from fluxvi0lin in Magnesium from Natural Foods vs. Supplements   
    Welcome to the forum fluxvi0lin,
    My son is in his late 20s now and been dealing with TS since a youngster.
     
    He's had a lot of success keeping his TS under control with good diet and supplements as needed over the years, as well as an avoidance of artificial additives and other things he has learned are tic triggers for him.
    I have an older thread documenting some of what has been helpful to him http://latitudes.org/forums/index.php?showtopic=687
     
    He used to take extra magnesium supplements, but for some time now he has relied on his excellent multi from Thorne Research (without copper & iron) plus a diet rich in magnesium foods & Epsom Salts baths or footbaths for transdermal Magnesium
     
    My son doesn't do well on B complex but has high B's in the multi which he has no adverse reactions to like with a B-Co
     
    Like you he initially tried meds (Haldol & others) but horrid side effects so went "alternative/complementary/holistic etc" and never looked back
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