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Everything posted by Chemar
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Short answer...yes, those "offensive" foods will bring on a reaction that quickly. The more sensitive the child's system, the faster the reaction. Also, when they have been avoiding triggering foods and then get exposed to even a tiny amount, a big reaction can occur. I am beyond shocked that someone was using an insecticide spray around kids and food at a party!!!!!! My son would react to just walking into a room that had been treated hours before with pesticide!!! The difference before and after candida treatment was phenomenal for us...not just my son but our whole family. We used Candida Clear by NOW as well as dietary restrictions. Our doctor did not like Nystatin or diflucan etc, but recommended the natural herbs etc that are found in candida clear, which includes capryllic acid... as an aside.....I wish they wouldn't call it "yeast" as it is so confusing for some people...candida isn't even a true yeast but a different kind of fungus..... We have a number of anecdotal reports here about dairy increasing tics for many kids, including increased voacl tics
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My son was on it for about 6 mths total but we saw results almost immediately. He went off it for a few weeks but when a yelping tic started, went back on it again Some years later he tried it again and did not like the effect. He was much older then (He is 24 now) When I search the word carnitine on Tourette/tics forum I get well over 500 results?
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Hi and welcome there are a number of reports of the amino acid l-carnitine helping with vocal tics. It is not intended for long term use but can be very effective short term. My son had an intense screaming tic during the months after he was weaned off the TS meds and l-carnitine was suggested by our physician and helped greatly. He was 11 yo at the time and on 500mg a day of the l-carnitine. We used the NOW brand. If you do a forum search, you will find posts by others on it as well
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Tics And areas of discomfort - Have any of you noticed this
Chemar replied to michaelct's topic in Tourette Syndrome and Tics
Hi Michael yes there are a number of anecdotal reports here of tics related to "irritated" areas -
Son just started shaking his head and rolling his eyes
Chemar replied to shaunms's topic in Tourette Syndrome and Tics
Hi shaunms you really do need a doctor to identify the tics but yes, they do appear to be tics Although I agree you should possibly find out about PANDAS (tics and other neuro symptoms triggered by strep) at the same time MANY cases of tics have absolutely nothing to do with PANDAS or infections of any kind, so please do also check into other things too. Tics can be caused by Tourette Syndrome, allergies (food and environmental), teeth/jaw issues, flicker from TV/computer screens and a host of other things in addition to infections and other illness. Obsessions and compulsions and other behavioral changes can also accompany TS, not just PANDAS We have some helpful threads here (see my signature below) and also a great book written by Sheila Rogers on natural ways to help treat tics (http://www.latitudes.org/book.html) Finding a doctor who is clued up on all these things is really so beneficial as most just take the "it is TS, let's medicate" approach!. I hope you find the answers you need. -
ADVICE...5-HTP - Face Wiping Tic
Chemar replied to cobygurl's topic in Obsessive Compulsive Disorder
If your son says he is itchy then it may be an allergy or other skin problem? and sorry but IMO the neuro is wrong that it "cannot" be a tic .......but it may be what is known as Tourettic OCD which is basically when tics morph into OCD or OCD symptoms become tics. here is a good list of common tics though not all are listed: http://www.tourettes.../CommonTics.pdf My son was 10 when he first took 5HTP on a short term basis. I honestly don't know about a child so young on it and it is not meant for longterm use Inositol is documented as being a safer alternative for young kids (I think?) -
Adult with TS - Alternative Treatment
Chemar replied to leahsheart's topic in Tourette Syndrome and Tics
Hi Leah my son is an adult now (24) and still doing well regarding tics. (He does also have Crohn's Disease and that is much harder for him than the TS) If you look in my signature below, you'll see a link to what has helped him. We have used only alternative/natural treatments since he was 11 (tried meds for a year with horrible side effects!) I also have a link to the Helpful Threads in my signature There is a lot of info here on natural treatments as that is the focus of this forum The book by Sheila Rogers is an excellent reference http://www.latitudes.org/book.html -
Seeking Input About This Case History
Chemar replied to astridrobi's topic in PANS / PANDAS (Lyme included)
Welcome borsoog You may want to start a new thread for your post as it is likely to get more responses that way as not everyone will see it on this other thread. -
Good Environmental Doc in Northern NJ
Chemar replied to jimTheBassPlayer's topic in Tourette Syndrome and Tics
Hi thundermonkey I believe Jim has other threads here re the physicians he decided to go to. Dr Sherry Rogers is on our advisory board at Latitudes/ACN though I realize Syracuse, NY is a ways from NJ but still, may be worth it. http://www.latitudes.org/brd_mem.html#Rea You may want to also post on our ADHD board as this being the TS/tics board, the approach we have is somewhat different than for ADHD.... one important one being that those stimulant meds your son is on are a major potential tic trigger for anyone with TS, and there are also reports here of some kids developing transient tics after meds like ritalin. I am just adding this in as I have concern that some TS parent may read and see the two meds mentioned as helping and not realize you meant helping for ADHD not TS! -
If there is a chance of there possibly being TS, with or without PANDAS, it is IMHO very risky for anyone , nomatter how qualified, to try to diagnose PANDAS by phone! My personal suggestion would be to see a PANDAS specialist in person, with your child present for a complete evaluation. Some of the treatments for PANDAS eg steroids can be detrimental to people who have T, as discussed above
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Hi it looks ok I think, but I have no idea what the last 3 ingredients are as I have not heard of those fruits? But yes, more magnesium would be needed, especially if he has tested low on that or does in fact have TS
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New Here - Suspect TS in Daughter - Please Help
Chemar replied to true2myself's topic in Tourette Syndrome and Tics
Yes, the allergies are usually to the milk protein ie the casein or to the lactose so it makes no difference whether it is organic. Some people with cow's milk intoerance do see to be able to handle goats milk. Elimination really does provide clues as when you reintroduce the offending food after a period of being off it...the reaction is usually very clear! That is so good that she has a clued up teacher too -
New Here - Suspect TS in Daughter - Please Help
Chemar replied to true2myself's topic in Tourette Syndrome and Tics
Yes, it makes absolute sense to try to get an accurate diagnosis to help with school. We did, and then got a 504 plan for my son which really made a big difference. He used it all the way from elementary through high. Some people prefer an IEP. If your child does have TS, it is covered in the education system under ADA, so many accommodations are entitled by law That is great that you have found a pedi doc with a more holistic approach -
Updates from members - successes or not
Chemar replied to kcjstaine's topic in Tourette Syndrome and Tics
Hi TNLady Honestly, from what you are describing, things sound pretty mild and do not seem to be disturbing your son's normal functioning. I agree that it is helpful to actually know what is causing the tics and other symptoms like OCD, but frequently finding a good Integrative or Environmental Doctor is easier said than done. Where I agree it is always a good idea to be sure there is no underlying infection triggering the tics and OCD etc, as PANS (as it is now called) is a very real diagnosis that can be better helped if identified and treated early. But please don't become so focused on that, or even a TS diagnosis, and possibly lose sight of the other potential reasons that your child has these symptoms. Most of all, I think it is important for your child not to sense that there is something "wrong" with them and become concerned, as that can often be a trigger in itself. Just do your own sleuthing, and hopefully find one of those rare gem doctors who don't just write a prescription for everything, but are actually clued up and willing to help heal holistically rather than just give stuff to mask symptoms! -
Anyone with vocal tics linked to allegies?
Chemar replied to leepee's topic in Tourette Syndrome and Tics
Welcome to both of you Lisa, sorry your post got missed! As logismum mentioned, some people with TS do seem to react negatively to fish oil and so for them flaxseed oil, or freshly ground flaxseeds are a better source of Omega 3, along with eating more omega 3 rich foods (avoid farm raised salmon !!!!) Allergies (food as well as environmental) can be a tic trigger and we have many reports here of tics resolving once the allergens are removed. Do take a look at our Helpful Threads pinned to the top of this board -
If you are looking for a more natural approach rather than just medicating, an Integrative or Environmental doctor is a good choice. I would suggest you look at our pinned Helpful Threads to get some more info on the many things that can cause tics http://www.latitudes.org/forums/index.php?showtopic=2459 Our admin, Sheila Rogers, also has a helpful book http://www.latitudes.org/book.html re the steroids...it is only tics related to Tourette Syndrome that may get worse on steroids due to the dopaminergic trigger. We were warned early on never to give my son steroids so never have. Some allergy meds can be tic triggers too You may want to take a look at this survey on tic triggers (scroll down the article for the list) http://www.latitudes.org/articles/finding_triggers.htm
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New Here - Suspect TS in Daughter - Please Help
Chemar replied to true2myself's topic in Tourette Syndrome and Tics
Hi Is there any history of TS or tic disorders in your or her father's families? Just do note that where it is often very helpful to have a neurologist diagnose, they often suggest the strong meds which can have very adverse side effects. Just be informed before giving any to your child. There is an excellent website to learn more about TS and the conditions that sometimes accompany it http://www.tourettesyndrome.net Here at ACN/Latitudes, the focus is more on natural ways to help kids with TS/tics, and our admin, Sheila Rogers, has written a very helpful book about all this http://www.latitudes.org/book.html Do also take a look through our Helpful Threads at the top of the page http://www.latitudes.org/forums/index.php?showtopic=2459 -
Honestly I would not be so quick to say it is Tourette and not PANDAS, especially with recent strep in his sibling, and similar symptoms of it for him!!!! TS (or other tic disorders) and PANDAS are not mutually exclusive so he really should be checked out by a PANDAS specialist. You may want to also post on our PANDAS board to get more input there. If it is Tourette Syndrome, those steroids for the cough may well have triggered more tics as steroids elevate dopamine, which in turn increases Tourette tics. There are many factors that can cause tics, apart from TS or PANDAS, and so it really does not sound like the doctor who treated him is very clued up about all this. As an aside, please be very cautious about medicating for the ADD as some of those meds can cause tic increases in kids who are TS.
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tics explosion on the 1.st streoid day
Chemar replied to croatian mum's topic in Tourette Syndrome and Tics
Spartan IMO the only way to have a better doctor experience is to choose an Integrative or Environmental medicine doctor. Sadly very few conventional doctors do anything other than conventional treatments. As you are no longer a child, and you say your tics are getting worse, all the more reason to see a physician who thinks outside the textbook and can help you determine what is triggering the tic increase rather than just give medication to cover it up and potentially bring adverse side effects. jmho -
Just an FYI that Mastic Gum (aka Mastica) is an ancient Greek remdy for ulcers, now understood to eradicate H. pylori and heal ulceration it causes. It's sold in capsule form as well as the chewable.
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So MANY Reactions To Supplements...How To Continue.
Chemar replied to cobygurl's topic in Tourette Syndrome and Tics
I agree with Chris that it is important to know just what the root cause of your son's tics are. If a child has tics from PANDAS, they are going to have very different responses to supplements than a child who tics due to TS, or allergies or environmental toxin exposure etc etc Also, the type of supplement can make a big difference in a person who may have sensitivities to some of the ingredients. We finally understand why my son has always been so acutely reactive to meds, some supps and food additives etc as he has an official Multiple Chemical Sensitivity diagnosis, which explains why he has to use supps that are very poor with no "filler" ingredients etc It's also important to have baseline levels and not to supplement if the child already has good levels. Adding a supp when there is no deficiency is not just a waste of money...it can actually have a negative effect. -
tics explosion on the 1.st streoid day
Chemar replied to croatian mum's topic in Tourette Syndrome and Tics
That is good news croation mom So it sounds like the PANDAS diagnosis is the more accurate one then, rather than Tourette Syndrome? -
Hello Angie we used a diet rich in Omega 3 as well as supplementing with it, and Gingko biloba
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Our physician advised us to introduce all supplements at low dose and individually,working up to recommended dose, noting any adverse or beneficial effects, and then adding the next. We were advised to keep a detailed journal which really helped determine what was good or bad, identified triggers etc etc My kids had been on multivitamin/mineral since they were tiny, so that was always present.
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If you just introduced an anti-fungal, he may be herxing ie experiencing the toxic die off of the fungal infection, which always makes things worse before they get better. Is he doing Epsom Salts baths to help with the detox? as well as drinking lots of pure water? Our doctr had my son on specialized detox remedies during anti-fungal treatment to minimize the herxing