Chemar

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 !!!

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

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

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

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

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.

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

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

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.

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

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

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

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

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.

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.

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!

yikes!!!!! A heaping tablespoon of Natural Calm is way too much IMHO!!! Even for an adult! Did he have a runny tummy after that? Excitement is a known tic trigger too

The sulfate in the Epsom Salts is an important part of the equation though! That is what aids in the detox property. Much better to use diluted Epsom Salts than add a chloride into the mix IMHO, especially as some people with TS are very sensitive to chlorides!

Hi we use the Monolaurin form as a natural antimicrobial, as recommended by our physician http://www.iherb.com/Cardiovascular-Research-Ltd-Ecological-Formulas-Monolaurin-600-mg-90-Capsules/23529 The only other place we found it was at The Vitamin Shoppe where they sell it in smaller quantity but it works out more expensive http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=CV-1068 I have seen rather remarkable research being done on it in HIV patients as well. Very potent anti-viral but seems to be very well tolerated.

technodad...my son has an extremely sensitive skin but benefits from the Epsom baths...were you diluting the Epsom in a full tub of water? I am wondering if perhaps you made it too concentrated? If you are using only a half or less tub of water, then it should probably be only 1 cup of epsom We saw immediate results with magnesium, but then remember my son has genetic TS where magnesium is proven to work Chewables are fine provided they do not contain artificial flavor and color and are not just magnesium oxide, which is very poorly absorbed, so really just a waste of money

Hi people can still have sensitivity to foods even if they are not allergic to them so yes, eliminating suspect foods and seeing the result is always worthwhile IMO

Hi I will try to post more later but would encourage you to also take a look at our Helpful Threads pinned to the top of this forum In my signature at the bottom of this post I have a link to what helped my son, who has genetic TS inherited from his father/grandfather etc You'll see that there are many things that can help to reduce the frequency and intensity of TS tics....for us and many others, giving extra magnesium supplement and doing the Epsom Salts baths was a major turning point! Bonnie Grimaldi's research backs this up Remember most conventional doctors scoff at the idea that anything other than medications can help so if you are going to see doctors, I would suggest finding an Integrative one. Also, re how you feel...it is natural to be distressed when we know something is "wrong" with our kids but do take heart....as you know if you suspect you have TS...it is not a terminal illness! Try to focus on enjoying your children and see beyond the tics. It will be ok!