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Chemar

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  1. Like
    Chemar reacted to Sheila in Why Tourette Syndrome Assoc Needs to be Investigated   
    Chances are, if you were satisfied with the treatment options that are available for Tourette syndrome and other tic disorders, you wouldn't be on this forum. So many families like you need help finding better therapies than the drugs that are offered. We've written a series of articles calling for an investigation of the Tourette Syndrome Association because for the last 40 years they have ignored information on safer, new directions for treatment while at the same time having a virtual monopoly on information provided to the media. Don't believe me? Click the links below and follow this effort. A 10 PART SERIES ONE Making our case – The first in a series of articles
     
    TWO Looking back 40 years
     
    THREE There’s a lack of research studies reflecting positive reports received
     
    FOUR Dr. Marshall Mandell’s amazing discovery was ignored by the TSA
     
    FIVE The TSA ignored the work of Doris Rapp, MD
     
    SIX The TSA medical board ignored the findings of the Alternative Therapy Network for Tourette syndrome even while TSA staff referred families to it and success stories with natural treatments were mutually shared.
     
    SEVEN The TSA and our organization had a liaison relationship for a few years . . . yet they sought to stifle our message and discourage people from trying natural approaches.
     
    EIGHT The TSA has failed to alert the public and medical community that environmental triggers can worsen Tourette syndrome symptoms. Their negligence is indefensible.
     
    NINE The TSA has censored and controlled the media message, making it difficult for families and physicians to learn of integrative and natural approaches to Tourette syndrome.
     
    TEN This is the final article in a series that has documented the Tourette Syndrome Association’s (TSA) failure to determine the cause of Tourette syndrome and find safe, effective treatments for symptoms.
    Please support this very important effort. We need to make sure research goes in the right direction and families learn about better options for treatment. Thank you, Sheila
  2. Like
    Chemar got a reaction from Josie in Doctor referral?   
    I would be very cautious about contacting the TSA for doctor referrals as they tend to only give referrrals to physicians who use conventional treatments (ie rx drugs) and teamyoung is specifically looking for a doctor who approaches things from a more natural aspect.
  3. Like
    Chemar got a reaction from lilliepad in Advice/Help   
    Hi lilliepad
     
    I am just bumping your post up so that others here can respond.
  4. Like
    Chemar got a reaction from searching_for_help in H. Pylori questions   
    Just wanted to mention that a product called Mastic Gum (aka Mastica) is one of the most effective methods of eradicating H.Pylori
  5. Like
    Chemar got a reaction from JuliaFaith in What supplements work best for inflammation?   
    I don't see Boswellia mentioned but it is an excellent anti-inflammatory supplement.
    http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21617
     
    Taking it with curcumin (extracted from turmeric) provides a double whammy against inflammation.
  6. Like
    Chemar got a reaction from Hope2 in At what age do other kids REALLY notice?   
    Hi Andrea
     
    my son was dx with TS when he was 10, altho he had an ADD, CAPD, SID with possible OCD etc !! from when he was 4yo and just starting preK classes. He had what we now know were early tics then too (eye rolling and blinking..thought to be related initially to his short sightedness/astygmatism, and some vocals) His young friends then never seemed to notice or comment on those early symptoms
     
    He had a pretty dramatic onset of the full blown TS symptoms just after his 10th birthday and so things were very noticeable to his friends as he had a lot of motor and vocal tics, and his OCD and depression became really bad.
     
    When the TS dx came , he was in 4th grade and he decided he wanted to be upfront about it. I got some literature and learned as much as I could and the school allowed him and me to tell the class about TS (they brought in the other 2 classes in the grade as well)
     
    it was a positive move as it not only helped give understanding to my son, but gave him the ability to continue to speak openly about it and so avoid misunderstandings with others.
     
    Yes, there were then (and still are now) people who ridicule and are unkind, but that is life (as my other son. 23yo, who has red hair and freckles, but no TS discovered )
    My TS son has always dealt with those types by responding firmly but nicely and tried to educate and then, if no improvement, ignored. Yes, I know he has suffered some hurt in his life from this, but overall now, where he is a 20yo young man with TS etc....he is a very sociable, well liked and well adjusted person who has a far deeper and more mature character than his peers. He allowed TS to make him better not bitter, and it came from facing it head on right from the start.
     
    For a 7yo I realize it may be a little harder as the level of comprehension is very different from an older child.
    Still, maybe getting some of those free leaflets/booklets that the Tourette Syndrome Association put out on how best to talk to young children (patient and peers) about TS. I think they also sell a video about it?
    I dont agree with much about TSA's closed minded views on treatments for TS, they do also have a lot of helpful stuff, especially with regards to education, school accommodations, school advocacy etc.
     
    another good site is http://www.tourettesyndrome.net/education.htm
     
    hope that helps a bit
  7. Like
    Chemar got a reaction from ibcdbwc in Cat allergy - time for the cat to go?   
    There are special shampoos you can use on the cat to reduce the dander & saliva allergens.
     
    http://www.petmd.com/cat/care/evr_ct_cat_allergies
     
    http://www.allergystore.com/cat_allergies.htm
     
    The trauma of giving away a beloved family pet would be a lot worse than trying to minimize the allergens imo
    Both the kids and the cat would be mega stressed at parting.
  8. Like
    Chemar reacted to Administrator in I am no longer able to copy/paste in forum?..off topic   
    Hi All,
     
    Sorry for the troubles that you have been experiencing. This is a confirmed bug for users that are using the latest version of Internet Explorer v11. We just applied a patch to the forums this morning, which should resolve the copy and pasting issue.
     
    Anyone that was experiencing the problem should simply empty their cache in their browser. The copy/paste functionality should then start working again on your computer.
     
    Note: The patch that was applied should fix the copy/paste issue for the majority of people. If for some reason anyone continues having a problem, then it is due to a configuration in your Internet Explorer settings. The following steps would need to be followed if you still continue to have difficulties (after emptying the cache in your browser):
     
    a. Open Internet Explorer.
    b. Click on Tools.
    c. Click on Internet Options.
    d. Under Security tab, Click on Internet and then click on Custom level.
    e. Scroll down and under Scripting, you will find an option “Allow Programmatic clipboard access”.
    f. Under that click on Enable and click OK and again OK.
     
    Please send a support ticket if you need any further assistance.
     
    Thank you.
  9. Like
    Chemar got a reaction from MissionMama in Dr.an Extreme Disappointment!   
    Hi T.Anna
     
    that is such a gracious response from you....thank you.
     
    I am personally appalled that health care workers would ridicule a child under any circumstances.
    And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho.
     
    Kudos to you again for taking the high road here.
    And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here.
    Feel free to message me if you would like it re-opened.
  10. Like
    Chemar got a reaction from my2sons 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.
  11. Like
    Chemar got a reaction from valsmom in Tics and Anger   
    hi
    honestly, with the strep history and rages...I would most definitely investigate PANDAS
     
    Yes, some kids with TS can have anger issues, especially as noted when they are exposed to allergens, toxins etc.....but personally I would not hesitate to first get a PANDAS evaluation as the longer you wait with treating strep inflammation of the brain, the harder it can sometimes be to treat!
     
    Also, if there is no family history of tics/TS...the likelihood of it being TS diminishes.
    Remember too, TS and PANDAS are not mutually exclusive but where TS does not get "worse" necessarily if not treated...PANDAS can!
     
    Our PANDAS forum parents will be able to give a lot more input
  12. Like
    Chemar got a reaction from AmyGG in Licking bottom of shoe   
    It may be tourettic OCD?
     
    We found cognitive behavioral therapy to be very helpful for tics/OCD behaviors that were troublesome socially or health hazards
  13. Like
    Chemar got a reaction from EAMom in Could it be PANDAS?   
    Please get a 2nd opinion before using that inhaler!!!!!!
    Before we knew that my son had TS, he had wheezing which we now know was actually a tic! A doctor said he sounded like he had asthma gave him an inhaler which made things way worse!!!
    I am not saying your child does not have asthma...just to have an actual respiratory doc confirm this before risking that inhaler...
     
    I am sure the PANDAS parents will have plenty to say on the doctor refusing to run blood tests and proclaiming no PANDAS on just his opinion! so will leave that alone.
  14. Like
    Chemar got a reaction from Jetocurly4 in What vitamins and suppliments help your tic child?   
    Phew that sounds kinda pricey to me valsmom, especially when there are other very pure and complete formulas around,
    However, I do understand that is specifically formulated and is helping your child so that is good
     
    Jetocurly, to answer your question, we used supplements separately, except for those that I mention as combinations ie the multi etc
    My son had no problem swallowing supps and as I mention, we had them split in morning and evening groups.
    You will see also that I mention for kids who struggle with swallowing pills, sometimes taking them while swallowing water or liquid of choice through a straw helps.
     
    We have gone through various brands over the years but are most impressed at present with Thorne research multivitamin/mineral and their B complex. It is the only B complex my son has ever been able to tolerate. They usually only sell via physicians but iHerb.com is now stocking them at much less cost. (free shipping over $20 orders)
     
    In addition to the large selection of good, pure supps at iHerb.com, I would highly recommend pureformulas.com as they carry excellent brands at very good prices and have free shipping on everything. We get our Douglas labs supps there and some of the others.
     
    My son also likes some of the NOW supps and some Jarrow for the extra things he takes.
     
    There is also the BonTech range of supplements ...but they are specifically formulated for TS so unless you know your child has TS, not really recommended. There are also some people with TS that seem sensitive to their ingredients. Douglas Labs were making them for BonTech but not sure if that is still the case.
  15. Like
    Chemar got a reaction from FraggleRed in The Treatments that have Helped My Son   
    Hi

    I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it.

    Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician!

    PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information in the later posts of this thread


    Hope this answers your question...feel free to contact me if you need more details
    --------------------------------------------------------------------------
    FIRST: I need to clarify that my son has genetically inherited Tourette Syndrome, and that my husband and his father before also manifest TS etc

    My son uses mainly supplements (vitamins, minerals, herbs and certain amino acids) and healthy diet as his "treatments"

    He was on prescription meds for a year, but had very bad side effects, and not much improvement in tics as well as a worsening of his OCD etc.


    His natural treatment plan was enhanced by detoxification from heavy metals (in his case mercury, and chlorella supplement was used followed at the end by alpha lipoic acid)) and also controlling yeast overgrowth(candida) in his digestive tract. (we initially used caprylate by Solgar but then found Candida Clear by NOW to be most effective)

    We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG ( beware its hidden names in food...!!), chemical preservatives and high fructose corn syrup) We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those.
    For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc

    My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy [/b] made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams drive him nuts

    There is an excellent article here at Latitudes on Tic Triggers

    http://latitudes.org...ng_triggers.htm


    Acupuncture has greatly benefited him too, as has reflexology and biofeedback (NOT neurofeedback)
    In addition he sees a NUCCA chiropractor who uses gentle pressure methods to help reallign him as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org )

    He also had Cognitive Behavioural Therapy for the OCD, and occupational therapy helped with many of his Sensory Integration issues



    In addition we tested for PANDAs (strep negative) and Pyroluria (not an issue) as these can also be conditions that exacerbate tics, OCD etc

    We saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) and she and her team worked together on my son's treatment and testing

    The OCD, depression, anxiety and other mood issues were always the most troubling for him, and the improvement that the supplements like primarily 5HTP & Inositol have made there are remarkable! (It is not a good idea to mix some of these with meds tho, so do note that!)

    I based the rest of his supplements on Bonnie Grimaldi's researched plan for her child.
    http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
    She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but I still use the combinations that I initially implemented for my son, based on Bonnie's protocol but fine tuned to suit my son's specific needs, under guidance from a physician, as it WORKS and so I am reluctant to change anything.
    ------------------------------------------------------------------------------------------------------------------------------------------

    Here is our program

    * multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 ( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! )

    * combo essential fatty acid supp containing flaxseed, borage and evening primrose oil
    ( My son is sensitive to fishoil, as some people are, but if you tolerate it, it is good to also use that)

    * Lecithin

    * Royal Jelly

    * ginko biloba(for ADD)

    * Inositol (for OCD & tics)

    * St Johns Wort (for OCD)

    * Vitamin B12 as METHYL cobalamin

    * P-5-P (vit B6)

    in the evening he gets

    * 5HTP (for OCD) (please note 5HTP can have bad side effects in some people so use with caution! and NEVER with medications that elevate serotonin!!)

    * Methionine (for OCD) (some people prefer samE)

    * calcium/magnesium/zinc combo( magnesium = main tic reducer)

    * taurine (main tic reducer)

    * GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants)
    ---------------------------------------------------------------------------------------------------------------------------------------------
    When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA for short periods)

    He used to take L-carnitine, which many folks find very beneficial especially for vocal tic reduction, and relaxation, but lately he seems to get edgy from it so we discontinued it.


    The doseage of the supps depends on age and body weight so I have not included it here

    I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining some of these supplements as interactions can occur which can be serious.

    Here is an excellent site for reading up on the various supps etc
    http://www.iherb.com/health.html
    -----------------------------------------------------------------------------------------------------------

    I should also mention that when my son began his natural treatments, he had tested +ve for epstein barr virus, tho without mononucleosis. We therefore adopted a homeopathic and herbal/supplement/diet regimin as antimicrobial
    Things like monolaurin(lauric acid from coconuts) olive leaf extract, and cooking with garlic, ginger, turmeric, plus the candida Clear (which has oregano oil, wormwood, pau d'arco and other antimicrobials in it) Extra Virgin Coconut Oil (we like Nutiva) is also excellent uncooked, and drizzled over food.
    The probiotics we use are natural Lifeway kefir and Stoneyfield Farms Plain Organic Yoghurt
    L-lysine is also a good supp to prevent viral outbreaks


    information overload????
    I will be happy to answer any questions!


    -------------------------------------------------------------------------------------------------------------------------------------------
    EDITED TO ADD: Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes (Tourettic OCD), and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. the amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release.
    A very good way to also increase endorphins is moderate excercise. I should also point out that *some people may tic more from phenylalanine* as it is dopaminergic. This was not so for my son for the short time that he used it, but it needs to be noted.

    Also wanted to mention the tremendous benefit my son has from EPSOM SALTS tubs. The magnesium sulfate in the salts seems to have good results on tics, detox and relaxation. He has one most evenings. 2 cups epsom salts in a tub of warm water and approx 20 min soak. He drinks lots of pure water, or chamomille tea while in tub too.
    Epsom foot baths are good too! as is soaking a washcloth in strong epsom solution and apply to areas where tics happening most. Epsom cream also helps. (1.2 tbsp salts, saucer hot water. dissolve and mix into 1/4 cup aquaphor cream) Morton Salt has a very good Epsom lotion
    ----------------------------------------------------------------------------------------------------------------
  16. Like
    Chemar got a reaction from logismum in What vitamins and suppliments help your tic child?   
    Hi
    I have documented my son's supplements in the link in my signature below.
     
    The things that help really are dependent on what is causing the tics, and also what the individual needs are.
    Not everyone responds the same way.
  17. Like
    Chemar got a reaction from Jetocurly4 in What vitamins and suppliments help your tic child?   
    Hi
    I have documented my son's supplements in the link in my signature below.
     
    The things that help really are dependent on what is causing the tics, and also what the individual needs are.
    Not everyone responds the same way.
  18. Like
    Chemar got a reaction from kakrpa in Newbie here - help w 23andme results?   
    bumping this up
     
    Welcome to the forum kakrpa
  19. Like
    Chemar reacted to mar in Great thanks!   
    This is long overdue but I just want to thank everyone on this forum and the whole forum alone. You have brought so many good things into my child's life. When he was 7 was when everything feel apart he is now 11 and doing well!! I would of never known to test my child with allergies due to tics and many more things. Food allergies or sensitivities that helped so much. He is doing so great with tics and he is so health conscious and is learning to know his limits as we introduce new things. He just got picked to be on the hometown part time travel baseball team and is so excited!! There where times where I didn't think this would ever be possible but thanks to you great moms and all your support and info you have helped my ds and helped me realize with a little extra work does make a difference!!
    Mar
  20. Like
    Chemar got a reaction from Jetocurly4 in Gluten Free and Tics   
    Hi
    yes there are many posts here on the benefit of gluten free diets.
     
    Not everyone finds it necessary as some people do seem to tolerate gluten with no adverse effect on tics.
     
    But for others, even those with no clear gluten intolerance, it does seem to help a lot.
     
    I would suggest you take a look at the Helpful Threads pinned to the top of the board as well as do a search on gluten, as you will find a lot of info.
  21. Like
    Chemar got a reaction from JuliaFaith in Understanding science- good article   
    I do agree with Michael......... plus, as someone with a background in medical/scientific research... I am also aware of the very real aspect of "skewed" research, "peer reviewed" included...where researchers make the data fit the hypothesis whether for prestige, payoff or tenure.
     
    I learned early on to be very cautious in just accepting something blindly because it was a "scientific" study. Especially when Big Pharma and others with a vested interest are at the helm.
     
    Obviously, there is a lot of invaluable info that comes from genuine, unbiased research, and thankfully there is a lot of that. But sad to say, not every "scientific" study falls into that category.
  22. Like
    Chemar reacted to MichaelTampa in Understanding science- good article   
    Feels like it forgot to mention the influence the pharmaceutical industry has on the selection of articles, that where they get their money can influence what they publish.
  23. Like
    Chemar got a reaction from SAS in PANS microbial exposure: treatment advice?   
    Welcome to the forum SAS
     
    I am just bumping your first post up so others here can reply
  24. Like
    Chemar reacted to Pilbara in NEW AND TRYING TO UNDERSTAND THE TICS   
    At the beginning of this year (which when I think about it was when the tics started) he use to run out of class every morning, had really bad anxiety, kept calling himself stupid. It brought me to tear he was so distressed. We investigation and he was diagnosed with Irlen Syndrome, which is a visual perception problem. Simply the white of paper dominates so the words move on the page. It's a correctable problem with the use of tinted glasses. He is now building confidence, is enjoying school, is catching up with his peers. Most importantly the anxiety
    is gone. Also most likely as he develops he won't need the tinted glasses anymore because we identified the problem so early.
     
    I'm a Social Worker by profession so really aware of behavioural changes. I've been looking for comorbid conditions but can't really say there is anything outside normal development for his age. Definitely can rule out ADD/ADHA. No other signs of OCD other than repeat of words and sounds. But even though repeated, there is no pattern to the number of times its repeated so I'm not seeing the consistency I would expect that comes with OCD. Definitely no other OCD behaviour or thoughts behind an action that I have witnessed.
     
    I would describe him as a child that is nervous, but I don't think he meets the criteria for an anxiety disorder. He just holds back, thinks about things, but quite often will have a go after watching someone else. I'm also finding that he is growing out of this nervousness. At 7 years he is involved in more high risk sports like BMX racing and Go-Kart racing. He has a buggy that he drives flat chat around the block. This is more than a lot of 7 year olds will partake in. Confidence is really starting to build. He is a very happy and active sports mad kid, good hand eye co-ordination as well.
     
    Occasional bedwetting, but again also within the realms of normal as bedwetting can occur up until 9 years of age. But very infrequent these days.
     
    NOW FOR THE BIG THING THAT I JUST CLICKED ONTO YESTERDAY. We live on a rural block, he is always outside in the dirt playing with his construction toys. This property has a history of being used for various industrial uses, ie. a pig farm, industrial spray painting, truck yard, etc. There may be contamination in the soil, but most importantly he may be subjected to toxicity from the Industrial spray painting. Although paints don't contain led now, there is a high chance that when they blast the old paint off the equipment, depending on its age it could contain rust and lead if over 40 years old. Once it becomes airborne the wind could carry it towards us.
     
    Thanks to the amazing women on this site and the incredible knowledge you have, I've located an Integrated Doctor (albeit a 2 hour flight away), that will see him in a couple of weeks time, but before then, he is posting the test through to get a hair sample so we can test for heavy metal poisoning immediately.
     
    I am so thankful that I have found this site. To find people that are actively trying to make life better for their children has been so helpful. I really appreciate it.
  25. Like
    Chemar got a reaction from Pilbara in NEW AND TRYING TO UNDERSTAND THE TICS   
    Hi Dedee
    I just want to mention that many people with TS do in fact have co-morbid conditions like OCD, generalized anxiety, ADD, ADHD etc etc so just because there are other conditions associated with the tics most certainly does not "likely rule out TS".
     
    I agree, as I posted above, that investigating possible PANS is always a wise move, but we do need to be careful not to confuse people who may well be dealing with TS.
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