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Chemar

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  1. Like
    Chemar reacted to Atex in Looking for hypoallergenic cleaning products   
    Not to make the rabbit hole any deeper, but pesticide use is a biggie as well.  I was reminded yesterday when I bought a pair of shoes and the box contained micro-pak..... Micro-pak is in a lot of consumer products.  Home - Micro-Pak (micropakltd.com)  It may be better than what they had been spraying down boxes with, but I still wouldn't want it lingering in the house.
  2. Like
    Chemar reacted to evemac in Looking for hypoallergenic cleaning products   
    Bon Ami - been around forever!
    Eve
  3. Like
    Chemar reacted to Atex in Looking for hypoallergenic cleaning products   
    We are partial to Dr Bronners as they are one of the most transparent ones out there, and we buy Sals and Castille soaps in gallon form which last quite a while.
    Dishwasher tabs: Seventh Generation tabs and dishwashing rinse agent
    Laundry detergent: Dr Bronners Sals suds, about 2 tbsp in a full load in our HE washer
    Laundry Drying: wool balls
    General Cleaning: Dr Bronners Sals suds diluted to about 1tsp:32oz water
    General Cleaning for Hard water stains: Dr Bronner Sals suds diluted to 1tsp:32oz vinegar
    Toilet disinfecting: Hydrogen peroxide (yes the standard stuff you can pick up for under a buck per bottle)
    Hand washing: Dr Bronners Baby Mild Castille soap diluted with water in foaming hand pumps
    For hard floors, we have a steam mopper which works well without any soaps/surfactants.  When they do need a wash, it's literally 1tsp sals in a bucket of warm water.
  4. Like
    Chemar got a reaction from Swetha in Causes of TS   
    For our family, that "label" was actually a relief.......it was good to have a clear answer, both for my husband after all these years, and for my son, who suffered terribly with confusion in why he was ticcing and unable to stop it. Once he got an answer in the form of the clear TS dx, and started to learn what that was, it actually helped to diminish his symptoms as he stopped stressing about them! (as did we)
     
    My son doesnt hesitate to let people know that he does in fact have TS....it has brought him great understanding from others, whether teachers, peers or anyone else....they now know why he tics and he doesnt get ridiculed, bullied, misunderstood, punished or anything else associated with his tics....if anything, he has found a blessing thru it, and expressed that in the speech for which he recently won the award.
    http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005846.html
     
    I can fully understand why those who have transient tics or whatever, stay away from the "label" TS.....but I find it odd that, if there IS a dx of TS...why anyone would want to hide it?
    Isnt it better to have the label "Tourette Syndrome" than to have some of the other labels that the kids put on someone who acts "differently" and to have teachers continuously reprimanding a kid for what they cant help?
     
    I just dont see why there should be almost this "shame" in calling it what it is....just the way we call any other health situation by the name it is dx with....whether a "cold" or "asthma" or "allergies" or "diabetis" or whatever........
     
    Also, letting others know about it brings both understanding for the person who has it, as well as helps to educate others about something that is very poorly understood and so brings TS into a more positve light.
     
    Better IMHO to just acknowledge the fact, do all you can to help minimise the aspects of the disorder that are disruptive or disturbing, and move on!
    As one poster on BrainTalk wisely put it "It's OK to Tic".....
  5. Like
    Chemar reacted to Swetha in Tics significantly while reading   
    Dear Chemar,
     
    Thanks a ton! 
    I am figuring out many things but very slowly! Your responses and your inputs have been very helpful so far. I am grateful. Also thanks for putting things into perspective for me! 
    Swetha
  6. Like
    Chemar got a reaction from Swetha in The Treatments that have Helped My Son   
    Updating Feb 2010
    as my son is now a few months past 20yo, 10 years since we started this TS journey..... I wanted to update on his current situation
    He is doing great!
    tics still mild, more slight facial/head movement, occasional eye blinks and "uh" vocal
    OCD pretty stable and more things he can handle with ease (neatnik, ordering things a certain way, some of the sensory stuff)
     
    He has a very healthy diet and basically *only takes his magnesium supplements in a variety of ways for tics. (natural Calm, a cal/mag/zinc supp, epsom salts baths, footbaths, soaked cloth application, in addition to dietary magnesium intake)
    He has recently gone gluten/dairy/corn free, along with still avoiding all artificial food additives and preservatives
     
    we havent noticed a dramatic reduction in the already mild tics from the gluten/dairy free diet, but he has found enormous digestive benefit from it, with his Crohn's Disease symptoms subdued!
     
    I should mention that his supplements for a day are now:
    for tic reduction:
    *Magnesium as mentioned above
     
    all purpose
    Omegas: fresh ground flaxseeds and flaxseed oil in diet
     
    Probiotic= Stoneyfield Farms Plain Yoghurt (he likes plain kefir as probiotic too but lately finds the yoghurt a better choice re his digestion/autoimmune stuff)
     
    multi Jarrow Multi Easy Multivitamin and Multimineral
     
    for OCD/mood related
    Vitamins METHYL B12,
    P-5-P B6,
    Inositol &
    Vit D3
    plus methionine in the samE form
     
    Crohn's supps
    for anti inflammatory and GIT healing properties
    NOW Boswellin Boswellia/curcumin (Boswellin also had OCD reducing properties, curcumin is a potent anti inflammation agent derived from turmeric)
    White willow bark (natural salicylate)
    DGL liquorice (MUST be DGL for gut healing property)
    slippery elm coats mucous lining of stomache and prevents further inflammation)
     
    once a month he goes on about a week to 10 days of "natural" antibiotic supplements of Monolaurin, Olive Leaf Extract and Candida Clear. Crohn's is known to have symptoms of bacterial/fungal GIT issues, so these, along with the probiotic yoghurt daily, really helps. He also takes L-lysine to keep Epstein Barr virus dormant
     
    His diet is very pure and wholesome, a lot of brown rice in many forms,( including pasta, cakes, crisps), quinoa products, vegetables & salads (except corn and potato), all fruits except grapes, pineapples, watermelon) organic chicken and lamb or beef, lots of wild alaskan salmon and healthy fish, olive and flax oil for salads and cooking, lots of garlic, ginger and turmeric in cooking, rice or apple cider vinegar, plain yoghurt used instead of milk for cereals, and in sauces instead of cheese or dairy, wheat free miso /soy products, coconut milk and oil and spread, green tea, pure chai, some pure fruit juices, lots of reverse osmosis water.....that kind of stuff
     
    amazing how the kid who looked at me in horror 9 years ago when I said 'no more blue raspberry slurpees or Doritos for you!' is now the kid choosing his own healthy options and doing so well in all aspects of his life as a young man!
     
    Going "natural/alternative" was the best decision we could have made when traditional meds caused more problems than benefit for him. Latitudes and this forum were an integral part of of our "turnaround" in managing his health
     
    I hope others will be be encouraged by our story, as 10 years ago I was a mom reduced to a heap of tears and despair over what was happening to my precious boy! Here I am smiling to see where he is today
  7. Like
    Chemar got a reaction from Swetha in Tics significantly while reading   
    Hi Swetha,
    Our experience was that sometimes relaxation or concentration can also bring a tic release.
    Honestly, if your son is not bothered by the tics while he reads, I would not draw attention to them, and certainly would not stop him reading. I realized early on our journey that frequently I was way more aware of tics than my son was, and drawing attention or trying to get him to stop often just ramped them up!
    We found using "daylight" light bulbs very helpful indoors, if that may help? Also diffusing a calming essential oil like lavender or jasmine, if he tolerates those.
    Also, my son needed corrective eyeglasses, and getting those helped a lot with both eye tics and overall.
    Just some thoughts that may be helpful to you?
  8. Like
    Chemar got a reaction from Swetha in Help needed to reduce the tic explosion for my son! - From a super worried mom!   
    Hi again @Swetha
    I just wanted to also comment on what you said re excitement being a tic trigger
    This is also something many people with TS seem to experience - whether it is great excitement or big stress - that seems to often cause tics to wax.
    Someone once suggested this could be linked to the adrenaline reaction in both, and how all that can impact dopamine levels (elevated dopamine may be a tic trigger?)
    Try keeping a journal of when you notice tics up or down and what you remember could be associated (food, environment, emotions etc) It is really amazing how one can begin to see patterns and then be able to implement whatever needed to help.
     
  9. Like
    Chemar reacted to Sheila in Tic Trigger Diary   
    Hi Atex, We have some additional resources that are associated with our book Stop Your Tics by Learning What Triggers Them. 
    See here  
    Depending on what you are looking for, I think you could find some helpful approaches. Please take a look and see what you think. I'd love to know what you think. 
    If you have something else in mind, maybe we could develop it for you and it would no doubt be useful to others. 
    I'll look forward to hearing back if you get a chance. Thank you! Sheila 



     
     


     
  10. Like
    Chemar reacted to Irene123 in 13-year-old with facial and vocal tics, getting desperate   
    Sheila, thank you so much for your suggestions and the resources you have provided. We removed eggs from her diet for two months over the summer, it did not change anything, we also went gluten free a few years ago and it did not have any effect either. I will provide an update in a few weeks if there are any changes for the better, hopefully. 
  11. Like
    Chemar reacted to Sheila in 13-year-old with facial and vocal tics, getting desperate   
    Hi Irene123, I'm so sorry you and your daughter have been dealing with this for five+ years. I agree it would make sense to consult an experienced naturopath. 
    I'll share just a couple of thoughts. I saw your post on PANS (where you said you posted in error and switched to this forum). You mentioned "We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. . . . When we notice something triggers tics, we try to avoid like hairspray and pool chlorine."  It's really good that you have been able to observe that some chemicals are triggering tics and you avoid them. Usually when someone is chemically sensitive, the more you can avoid potentially troublesome items, the better. Also, when something is used frequently, like a body wash or shampoo, it can be hard to know if it is having a negative effect. That's in contrast to getting in a swimming pool and seeing that the pool chemical increased ticcing. I would suggest you try to go unscented with everything in the home, from laundry detergent to dishwasher soap, to personal products. And also use natural cleaning products, like those from 7th Generation. And avoid plug-ins, fabric softener liquid or sheets, etc. 
    Also, when it comes to diet, it is possible that she is eating something every day that she is sensitive to. You mentioned eggs and whole wheat, which are common culprits for people with food sensitivities. A naturopath should be able to help identify them or advise you.
    One test that is often recommended is from Great Plains Laboratory, which has just recently changed it's name to Mosaic Diagnostics.  https://mosaicdx.com/resource/great-plains-lab-is-now-mosaic-diagnostics/     This test might be very helpful, but needs to be ordered through a practitioner, like a naturopath or a doctor. https://mosaicdx.com/test/ige-food-allergy-test/
    (If you already looked into food reactions like that, sorry, I missed it.!) I did see that your daughter has a limited diet because she likes it that way. I know change is difficult, but if she is eating something that is causing a reaction, it's important to address that. 
    I hope you will let us know how things are going, especially with the start of the school year. Wishing you the best!! 
  12. Like
    Chemar reacted to MsMom in Hotels for Dr. Latimer visit   
    Thank you so much for the response. I called the office and got some suggestions.
  13. Like
    Chemar reacted to Lucky3 in Years of thinking about triggers...   
    Finally, after years and years of despair, powerlessness, and just thinking and grinding in my head, I think I've found triggers that cause my son's tics. What has helped me enormously (really HUGE) is this platform, in which I have never shared anything myself but have been reading for months). It makes you aware of the fact that you are not crazy, because sometimes your environment thinks that 'it's not too bad' or they think I make it worse than it is. While as a mother I feel that something is not right, that there are causes, and that you want to solve them for your child. It really seems like some kind of primal instinct. While at the same time trying to find the balance so as not to overdo it, which I found extremely difficult. This site also helped me in that, I've read messages from people who said that you don't get the years back and you have to enjoy your child, that he is not just the tics but has so many talents. And that you don't help him by going too far... I think this was and still is the hardest for me.
    Our story and my quest in short:
    Our son has had problems with his throat and breathing from an early age, a lot of coughing, a lot of throat infections and was sick with a fever every two weeks. From the age of three there were frequent sniffing noises, throat clearing, etc. They were not really 'tics' yet. Later we had his throat and nose tonsils removed, despite the fact that I felt I had tried everything first. This helped a lot with the fever/being sick etc. But those slight tics kept coming and going. After an intense period of moving / new school / corona / death of grandma (all at the same time) the tics exploded. They alternated but were almost always with throat / nose and later with eyes (that's something from the past few months).
    We've known for a long time that dairy makes it worse, so we hardly give that to our son (we know what can and can't). I am also aware of PANDAS, but I do not feel that this is the cause for him.
    Now I recently discovered by paying very close attention / writing down that MSG (glutamate) plays an enormous role and he gets a very bad tic with throat clearing because of it. Also from glucose fructose. As soon as he gets an abundance at once (such as a lot of spring rolls last weekend) it was immediately extreme. And he also suffers from pollen / seasonal allergies / dry air due to the air conditioning.
    Now that I finally have more insight into the triggers, my thoughts turn to the cause. Why are these triggers a problem to him? And doesn't my other son suffer from it?
    I now suspect it all comes from the gut.
    He also regularly suffers from worms in his stool and from candida in his toes. Finally, I think he has a magnesium deficiency, it also seems to be the only thing that REALLY has a positive effect (I give magnesium citrate). Now I have discovered after a search that these things are also related to each other. Would he suffer from parasites? Which in turn cause a magnesium deficiency? A magnesium deficiency can also affect the candida infection. And then I read again that a magnesium deficiency causes more complaints when consuming glutamate:
    If there is too little magnesium in the brain and too much glutamate, which is often added to processed foods as a flavor enhancer, the risk of neurological disorders seems more plausible: this is a negative combination of an excess of stimulant and a deficiency of inhibitory substances.
    It's a long story, I had to get it out. And I will now continue with a magnesium test (not a blood test as it doesn't measure it well enough) and a parasite test. I hope this post might help you in your search or read something that will help me in my search. I also read here several times that people said 'don't stop looking for triggers' and Chemar has it on her profile: Never stop exploring, seeking and investigating information....your light at the end of the tunnel may be just around the corner !
    And that sentence really stuck with me. Thank you for all your time to share your experience.
     
     
  14. Like
    Chemar reacted to JPdad in My child is 99% recovered- just sharing good news   
    I also wanted to also add some good news to this thread.  I joined this forum in 2013 back when my son was 5.  He is 16 now with no remaining symptoms or flares ups and has been this way for about 5 years.
    What worked for us was getting a proper diagnosis early (within 2 days of first episode) and fighting like heck to get a doctor to prescribe long term antibiotics.  At first he was just given the standard course of antibiotics to fight the strep or ear infections he had.  Symptoms would improve, but then come right back.  After about 6 months of constant flare ups we ended up getting him on daily antibiotics for 2 years.  To do this it took traveling out of state to a Pandas friendly doctor. After that, he went down to just a preventative does of antibiotics a couple times a week for a year or so.  After that, we went down to just antibiotics in the winter months, then down to just when he had any illness or symptoms or a dental visit.  Now he’s been completely off antibiotics and flare free for about 5 years.  Puberty really seemed to shut things down for him Pandas wise. I strongly believe we would’ve had a different outcome if we didn’t catch it early and get him protected with long term antibiotics.
    His original symptoms were awful OCD and tics.  He had to do weird things like tap his leg with his fist 3 times after doing anything like throwing a ball or spelling a word.  His tics ranged from mild blinking to full upper body contortions.  It was hard to watch and heartbreaking at times and we truly wondered if he’d ever return to normal.  
     
    The reason I came here today (first log on in 5 years) was because my son opened up to us on vacation about his Pandas for the first time.  It was hard to get him to talk about it when he was young.  Last weekend he explained the OCD urges he used to have.  Some he hid, like when he played basketball he had to dribble down the court an exact number of times during drills…. Other things he couldn’t hide, but the OCD was worse for him than even we could even notice.  
    Anyway, every case is very different and I know how it feels to be in the midst of it all.  Just wanted to give everyone here some hope that there is light at the end of the tunnel and the outcome can be a successful and well adjusted child.   My son has a 3.8 GPA in High School and has several offers to play college baseball.  He is a 3 sport athlete, class Vice President, and has a great friend group.  Everything you could hope for a child.  All I wanted 10 years ago was to be able to write the post I am writing right now.  Wishing you all strength in your battles and the best of outcomes for your children! 
  15. Like
    Chemar got a reaction from MLee in Post vacation tic   
    This is a lesson we also learned the hard way!
    My son's reactions and length of waxing varied depending on what he was exposed to. Thankfully he was able to recognize how dramatically things could deteriorate by eating stuff that he knew triggered tics before.
    We did find detoxing with Epsom Baths very helpful, as well as some other things that benefited (eg acupuncture, amongst others)
    I hope things settle soon for your child @MLee
  16. Like
    Chemar got a reaction from MLee in Vocal tics   
    @MLee @JulesLou
    I think you have both added B6 (P-5-P)?
    But not sure if you tried NAC yet? (N-Acetyl L-Cysteine)
    My son did not respond well to it-but I know many others have had good results.
    The recent ACN/Latitudes newsletter also had this testimonial about it with B6
    https://latitudes.org/these-nutrients-helped-our-son-with-his-tics/
  17. Like
    Chemar reacted to Sheila in Calming Effect of Magnesium on Tics   
    Thank you for sharing this, Chemar. What a great reminder for readers to revisit the role of magnesium, which we talk a lot about on this forum.
    For some it could mean going back and giving it another try. Or, it could be giving magnesium for the first time. It's great that in the case you mention, there was an immediate calming effect on tics so it was clear it was working.  If giving it a try, give it each day, as it does not stay in the system long. And, start slow in case it could cause more of a laxative effect than you want. 
  18. Like
    Chemar reacted to JulesLou in 3D "Organoid" Models & Tourette Syndrome Study - Yale   
    @Chemarthis is very interesting reading and hopefully a bit of a break through for people in the future.
  19. Like
    Chemar got a reaction from JulesLou in Dr Piper Gibson treating tics/Tourettes   
    I have not heard of that doctor @JulesLou
     
  20. Like
    Chemar reacted to Atex in Dietary Nutrition & Neurological Disease   
    I totally agree.  It takes a lot of work and certain products may cost more but we have found it's worth it.  One big hurdle is understanding exactly what you're eating.  For example, MSG is hidden by giving it so many different names.
     
  21. Like
    Chemar got a reaction from JulesLou in Epsom salt bath   
    Yes, chlorinated pools had such a negative impact on my son as well!
    Try keeping a journal so you can identify your child's tic triggers and responses to supplements or other changes. It helped us to do that.
    I hope those vocals will wane for your son
  22. Like
    Chemar reacted to JulesLou in Epsom salt bath   
    Thank you again, my son has vocal tics which are noticeable but bearable but last Sunday he went swimming for the first time in ages and Monday he has started two different very loud noises so I am convinced the chlorine in the pool has started these. I am hoping that they will settle down again soon but will now look into buying L carnitine. 
    I am also thinking about eliminating dairy to see if this helps as I have read lots of stories on this.
  23. Like
    Chemar reacted to Conanjaguar in Eye tics   
    @Chemar
    To add onto what you said, I usually take an equal amount of Vitamin D3 with magnesium, L-Thiamine, and the P-5-P form of Vitamin B.
    And yeah, 300-400 mg if magnesium is generally recommended, with men needing more.
     
  24. Like
    Chemar got a reaction from Conanjaguar in Eye tics   
    @MLee
    We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium.
    We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome
    400mg is still the suggested adult supplemental magnesium dose as far as I know.
  25. Like
    Chemar got a reaction from MLee in Eye tics   
    @MLee
    We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium.
    We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome
    400mg is still the suggested adult supplemental magnesium dose as far as I know.
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