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Everything posted by Chemar
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sounds like dud doctors IMHO Also, TS and PANDAS are not mutually exclusive! Candy contains so many tic triggers that I am not surprised he started ticcing!! The artificial dyes and the HFC (high frustose corn syrup) alone are bad enough but then add all the other garbage and you have a tic time bomb!!! If he was doing better without milk it would fit a profile many have discovered here. Why not try giving him goats milk (very very few people are allergic to it') or one of the milk substitutes (as long as he tolerates rice or almond or soy)
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Bonnie if the braces are made of metal (ie not the invisalign kind) he may also be ticcing as a reaction to that! ....we have had numerous reports here about braces triggering tics for whatever underlying reason. Sugar also does seem to be a tic trigger in excess, and for some, even small amounts.
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Hi Bonnie Have you considered a NUCCA chiropracter? (http://www.nucca.org) When my son had a shoulder tic, it was related to his cervical vertebra, including the atlas, being misaligned and once the gentle realignment was done, the tic resolved. NUCCA chiros are very gentle and careful and highly respected in their profession
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Hi for some great GFCF recipe idea you could try http://healthy-family.org What type of surgery is your doctor suggesting?
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No we did not use Walmart and yes I am also referring to the rage side effect which is claimed to be "rare" but as you have noted, enough people are reporting it anecdotally to make it not so rare! I am glad you found something that works for you Guy and the only reason I always comment on the side effects is that, as you again note, someone may take it at the full dose and have a very serious reaction. Unfortunately doctors do not in general make their patients aware of potential side effects so patients need to be informed before they just take a pill! (and yes, that applies to supplements too!)
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No I don't remember what brand and he experienced a lot more than out of control !!! rages. He was paranoid, phobic and his thought processes very erratic. I just get very disturbed when I see side effects described as "rare" Guy We were told that about all the meds my son tried and the side effects were also horrible and since being on the forums (here and elsewhere) and digging deeper, , I have realized that the canned "rare side effects" that the docs and pharma state is simply not so.
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Recommend PANDAS doc in Appleton, Wi?
Chemar replied to Sean's topic in PANS / PANDAS (Lyme included)
Hi and welcome you had posted this on the Tourette forum so I have moved it here to the PANDAS forum for you -
Said it before and have to say it again....Clonidine can have horrible horrible side effects in some people so please be careful before trying it !!!
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Hi I don't know any doctors in your area but just wanted to welcome you to the forum Great that you are reading Sheila's book. Do also take a look through the Helpful Threads summary pinned to the top of this forum Hope you find the answers you need. all the best
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I am just bumping this post up for replies as this member really needs guidance. technodad, I do think it would be helpful too if you give members here a brief synopsis of what you have posted on TS forum, and also re the history of strep etc
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technodad...just another word of caution..... STEROIDS are a big trigger for Tourette Tics as they have a dopaminergic effect so until you are certain that your child does not have TS, be very very careful about steroids! They do help with PANDAS, but are bad for TS Honestly, while this neuro may know a little about PANDAS, you would be well served to ask on our PANDAS forum as to whether there is an actual PANDAS specialist in your area http://www.latitudes...hp?showforum=17 I am sure there are many great neurologists who are on the ball about all these things....but I have yet to meet one. The ones we have experienced are "old school" in their knowledge and approach and were only willing to treat TS with those awful meds with multiple side effects and considered all else "quackery'............hopefully your neuro is different but just be cautious and don't just accept everything they say as fact IMHO
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Hmmmm I would be very careful as to whether this neuro doc is actually PANDAS literate...and also cautious of the "other meds" You may want to post on our PANDAS forum here and also look at their "helpful threads" summary pinned to the top of the board...the parents there are very clued up on doctors and what to ask and testing etc http://www.latitudes...hp?showforum=17
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Yes it could be PANDAS if they have both been strep infected/exposed. I hope the doc you are seeing is PANDAS literate? Genetic TS could also show in more than one family member Also if you have some environmental allergen triggering the tics (eg mold, arsenic in woodwork, formaldehyde in new carpeting, etc etc etc) then both could be susceptible and ticcing as a result.
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UK rise in children with "throat infection"
Chemar replied to Chemar's topic in PANS / PANDAS (Lyme included)
lol Wombat I had to giggle as I have never heard of a "Christian" name for a microbe I am guessing you mean biological name I lived and studied in the UK for a number of years and was not aware of a lack of nomenclature identifying infectious agents tho? Maybe I just was not paying finite attention to it. -
I was amazed that there was no mention of what these "throat infections" were caused by http://www.bbc.co.uk/news/health-20002115
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Neurologists are not the ones to see re PANDAS...they most often do not even acknowledge it!! and their answer to TS is usually to suggest prescription meds! You may want to first read up on PANDAS to see if you think your child fits the profile http://www.pandasnetwork.org There are no actual tests for TS other than genetic screening and that is still in experimental stages. It is usually based on clinical observation and family history Do you have Sheila's book and have you read through the helpful threads? http://www.latitudes.org/forums/index.php?showtopic=2459
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Hi Skyler sorry you are having to deal with this. You are right that it is unusual for Tourette Syndrome to manifest in late teens, but not impossible. Still, from what you describe, it really does sound like something else may be triggering you tics. We have many reports here of food or environmental allergies making tics worse so, being as you have recently entered a new situation for both at college, that is the first place I would look....is there something in your room or diet that could be making the tics more intense and frequent? We have an interesting "unscientific" survey posted on our website rleated to tic triggers that may give you some clues....the survey result is near the bottom http://latitudes.org...ng_triggers.htm also take a look at our Helpful Threads summary http://www.latitudes.org/forums/index.php?showtopic=2459 hope that helps get you started on trying to work out why the tic is worse.
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Where I agree it is always a good idea to check on possible PANDAS/PANS or other infection trigger for tics, I do need to point out again that not every child that has a sudden onset of tics has PANDAS Genetic TS can also "switch on" suddenly too (especially at pre or puberty in boys when the surge of androgens may result in increased dopamine), as can any other trigger result in sudden tics eg exposure to an allergen, pesticide, mould etc etc etc etc etc
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Guy that is why I asked if it was meant to be on one of our infection forums OLE and Oregano oil are both natural antimicrobials and so yes, they help tics when there is an infection trigger. They are not TS or tic aids per se
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basics on benefits of sulfur in detox and other biochemical processes http://www.ehow.com/...etox-soaks.html http://www.peacefulh...m/detoxbath.htm there are many more articles, including research, plus info on the benefits people have derived for centuries from the Hot Sulfur Springs that occur naturally around the world Kid's Calm is a multivitamin/multimineral The Natural Calm is the one to use for additional magnesium benefit
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Hi it's good that you are investigating PANDAS as with the sudden onset and personality change etc that is always a possibility! Just an FYI that the Kids Calm you purchased is a MULTI vitamin/mineral so you give just the dose recommended. For the extra magnesium it is the pure Natural Calm magnesium powder that one mixes in liquid that is suggested. It comes in assorted flavors http://www.iherb.com/search?kw=natural%20calm
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I posted a reply to your thread on PANDAS forum that we have always used the Monolaurin capsules made by Cardiovascular Research. Get it at iherb.com (cheapest) or Vitamin Shoppe Easy to swallow capsule and we have found it to be highly effective as a general antimicrobial.
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2 cups in a full tub of warm water is what is generally recommended, so one cup in half a tub and less in a quarter tub etc It should not affect the bowels unless swallowed.
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Can you completely rule PANDAS out if....
Chemar replied to dsnow777's topic in PANS / PANDAS (Lyme included)
bumping up for replies -
Yes a teaspoon is what is recommended for children. Phew...you shocked me a bit there with the heaping tablespoon If your son is showing such a negative response to the magnesium, you really may want to look into something other than TS as a diagnosis...especially as you mentioned the strep throat stuff earlier. Honestly, I wouldn't wait for things to get worse before consulting with one of the PANDAS literate physicians, as if this is strep induced, the sooner the brain inflammation is halted etc the better for the child's long term prognosis! The parents on the PANDAS forum can confirm that the longer you delay, the harder the healing becomes!