Is this TS or just a passing tic?

[Ausclare]

Dear Roses,

I think what your feeling now is normal. Its like the roller coaster ride anyone goes on when there is change. I believe that none of us are given anything that we can't handle. That although it seems like an impossible mountain to climb now, I'm can tell you with experience, that now you've found this site your life will change.

 

The people on this site are so supportive and loving I know that they have the compassion and knowledge to help you get through even the biggest challenges.

 

The first time I read some of these threads I knew my life had changed after four years of crying.

They have given me the confidence to accept my children have Ts, and that it doesn't always have to be this sad. Just read the new topics from Chemar.

If you live in America you even have the advantage of Health care professional addresses.

Us poor Aussies still have to try trial and error!!!!!!!!

 

Good luck with your journey, I'm sure we will all be better souls for it.

Love and hugs

Ausclare

[Guest Guest_efgh]

Hi Ausclare

 

Good to see your post. very true

I believe that none of us are given anything that we can't handle.

 

How are your son's tics now? Are they waning? take care and keep us posted.

 

goodluck

[Chemar]

See what a great group this is, 7Roses?

 

Everyone who has left you a message here has been thru the emotions you are experiencing and so their words come from a very deep understanding.

 

Just to reinforce something from my very first post that Claire has also mentioned......where the multivit and the cal/mag/zinc supplements should only bring benefits....there are some people who dont tolerate fishoil too well, usually only when it is on its own, not blended with the other EFAs....but there are some who just cant handle fishoil at all(usually people who have seafood sensitiviteis) and then it is best to use just the flaxseed with borage and evening primrose added.

 

Dont forget that it is also important to try to avoid letting your son eat "junk" food...ie foods that have added artificial color or sweetener, preservatives, MSG and the dreaded High Fructose Corn Syrup that they seem to stick in everything these days. There is enough evidence now from many anecdotal accounts that those things do trigger tics.

 

Once you are able to, I still would strongly recommend that you still do take your son in to see a doctor, preferably one from those lists pinned to the top of this forum by Dr.Sheila Rogers (who is the one to thank for this wonderful website )I realise that this is hard to do till you have the finance or the insurance available and so in the meantime just keep trying to do all the good things you can to help.

But, as many of us both with TS and just transient tics have found, their are often underlying things that make tics worse, and these are usually best detected by blood tests........

 

they are things like Yeast Infection (which TONS of people have and dont even realise it is making them ill) it is called Candida and usually grows in the digestive system where it produces toxins that cause all kinds of health problems. Usually people who have used a lot of antibiotics have it, or those who have "cravings" for sugary/starchy things. It is real easy to get rid of it by following a special diet for a bit and using a supplement called Capryllic Acid.

 

Also there is Mercury.

because you son has exhibited Selective Mutism it is very possible that he has high mercury levels, most often caused by the childhood vaccines! but also sometimes during pregnancy if the mom has lots of mercury fillings , or ate a lot of canned tuna and fish high in mercury.

Again there is a very good supplement called Chlorella, that helps to "mop up" mercury and also one called Alpha Lipoic Acid that is a final stage treatment to help get mercury out of the brain.

 

 

But before one tries to treat these situations, it really is good to have a doctor who is trained in these natural treatments to guide you with the testing and doseages.

 

I cant remember from the above posts if your son has ever had strep? There is a whole area of Tic research and treatment now devoted to something called PANDAs, where it has been found that strep (both the strep throat kind and the other streps that dont always show themselves as a "strep throat") ...well, these strep viruses can also trigger tics. Again, a correct blood test by a knowledgable doctor will reveal whether their is high strep present(the usual throat swab cultures dont reveal this properly) And, antibiotics are given which have a very positive effect in reducing tics.

 

While on the subjest of antibiotics....you have probably seen the term "probiotic" in a lot of the threads here......they are the "good" bacteria that our bodies need and are usually deficient in our modern diets, and especially when antibiotics have been used.

I personally feel that everyone in this modern world should take probiotics.

They are available in supplement form, but the least expensive and healthiest way to take them is thru natural yoghurt (NOT the flavored, sweetened ones...the plain kind)

My favorite brand is Stoneyfield Farms as it has a good balance of probiotics.

I like it plain with oat cereal, but my son needs it "flavored" so I chop fresh fruit into it for him and he likes a little honey or maple syrup in it too.

 

 

Well, dear 7Roses....I think that is quite enough info for you to take in from one post so I will say bye for now and just keep looking to the Lord for guidance and strength..........I am so glad He has brought you here.

You and your son are in my prayers too!

[Chemar]

Roses....

I have bumped up the thread that has a link to info on Pyroluria....it is a condition that usually runs in families, and can cause tics. it is simple to test for and easy to treat.

[Ausclare]

Hi all,

 

Just a quicky to let you know I'm still around, my 2nd son's tics are still really extreme, but yesterday I got a referral to an Immunologist at the Royal Childrens Hospital Melbourne. Unfortunately the appointment time is about 4-6 weeks so I'm trying to eliminate foods at home.

School is driving me to distraction because the kids swap food and I have no control over it, even though I explain it time and again to my child.

Home schooling is still an option but I worry that I'm turning into a control freak!!!!!!

See Roses we're all trying to keep the worry and insecuritiy at bay.

 

I'm going to ask for heavy metal testing, dairy, wheat and I'm going to try for all vitamin and mineral tests, but don't know how supportive this Dr will be.

Have I left anything out. Feedback would be much appreciated.

 

Ps,

I passed this site onto more Aussies so you can have a crash course in upside down senses of humour!!!

 

LOL

Me.

[Ausclare]

HI again,

 

I just read the last reply for Roses from Chemar, so don't worry about the replies to me.

Thanks.

[The7roses]

Hello, Hello!!

 

Just to keep you all posted, I went and got the Spring Valley Calcium/Magnesium/Zinc suplements. The pharmacist said to start off easy as these capsules have 333 mg. of calcium, 133 mg. of magnesium and 5 mg. of zinc. She said some kids can't tolerate too much all at once and, if he did okay with this amount after a week or so, I could give him 2 capsules daily instead of one. Do you think this is okay?? Also, all of the kids vitamins have dye in them and she said the adult brands are too much for a child so she suggested the Poly ViSol infant vitamins at 2 droppers full a day. Do you all think these are good to start with? My little Devyn is kind of overwhelmed at all I've been telling him. He is willing to try most of it except for the TV part, as he loves sports. This kid turns on ESPN to catch up on the scores before he goes to school each day. That one is going to be tough for him. I'm just going to start off with the supplements, then we'll try and do the TV and if neither of them work, we'll start on the food. I've been watching him like a hawk for the past 2 days to see if any if the tics are slowing down. How long should I wait before I would see an improvement with the vitamins? And, since there doesn't appear to be TS in the families, that we are aware of, am I safe to assume he just has the transient tics? Tell me more about them, if any of you would. How are they so much different from TS?

 

Again, I am just so relieved tohave you all at the touch of my fingertips! I feel like I now have a 24 hour lifeline. If I think of something I don;t know an answer to, all I need to do is turn to you. How comforting. You all are my angels.........

[Claire]

There are transient tics, chronic tics and TS. Chronic tics and TS don't disappear within one year or so, as do transient tics. TS symptoms are generally more severe than chronic tics, though I suspect that Chemar's son with TS has fewer symptoms than some children with mercury/yeast issues and chronic tics, due to the care they have taken to build his immune system.

 

Chronic tics generally improve greatly once puberty starts. TS often improves by adulthood. This is just what I have read.

 

FYI, I totally understand with the TV and his not wanting to do the test, but just for the record, the only way to really test it is to not watch any for a week, then reintroduce it and see what happens. Still watching a little a day during the test period doesn't really seem to do much. It is like my son still having a little wheat a day, though much less than before--his excema didn't improve until we totally eliminated it. I am not pushing you to do this at all, I just don't want you to rule it out as a trigger without truly eliminating it. You would definitely see improvement within a week.

 

We also saw improvements from food eliminations and killing his yeast, and that took a week.

 

I don't have an answer for you on the vitamins--e.g. your approach and how long it takes--I am not the board's vitamin expert! Others will answer this question for you I am sure.

 

Glad you are feeling better.

 

Claire

[Chemar]

Hi 7Roses

 

I am so very glad that you are on the road to dealing healthily with the tics.

 

As to your question re transient vs TS, in all truth this is something that only a neurologist or devel;opmental pediatrician can answer for sure, but...........

 

it is unusual to find actual Tourette Syndrome without a genetic link somewhere.

and

with the prevalalence of transient tics in modern society....it is very possible that you are dealing with that.

 

It usually takes a couple of weeks for the vitamins to show full effect, BUT do remember that all the vitamins in the world wont help enough to stop tics

IF

he is eating food that has the main triggers in like food coloring, artificial sweeteners, preservatives, MSG, high fructose corn syrup etc

 

AND

if there is a root cause that needs treatment like the things I mentioned in my last post

 

PANDAs(strep --not just strep throat)

Pyroluria

Yeast (Candida) infection

Mercury or other heavymetal(eg lead) toxicity

food or environmental(which includes photosensitivity to TV/Computer) allergies or sensitivities

 

If you dont start seeing improvement from the vits then eventually you are going to have to start a process of elimination of the other possible causes.

 

As to the doses of vitamins....that is really where it is hard to gage as it does depend on what is deficient (again there are tests for this)

 

I would recommend that you take a look at Bonnie Grimaldi's website and look at the doseages she recommends for kids your son's age....(you find the info in the section called "Product Information")

 

In case you havent heard of her, she did research and developed a supplement plan to help her own son with TS and it worked so well that she began sharing her info with others.......the first link that I am going to post below here is from 1999 when she posted her "recipe" of vitamins on the internet....that will give you a guideline on what she(and now many others, including my family) have found to be a good basis for tic treatment.

 

She now has developed her own range of products called BONTECH and has refined her program by adding some new supplements too

The second link that i am posting is for her current website which has a LOT of EXCELLENT information and as I mentioned, also lists her product ingredients and the doseages recommended for various age groups.

 

Just do remember that Bonnie's program is primarily designed for people with TS, although numerous folks with transient tics have benefitted from it too.

 

There are many on this Forum that have used her vitamins with great success!

and others (like me) who have her research to thank for providing me with the guidelines to develop my son's own plan(I dont use her products, but follow her guidelines....my main reason is that I do have to budget very carefully and, altho her products are VERY fairly priced, especially considering their purity and formulation...still, I have been able to put together a less expensive program for my son, that also enables him to have to swallow less capsules per day...by getting combinations and brands that contain the things that his symptroms and testing showed he specifically needed)

 

So here are the links for Bonnie's program

FIRST, her original plan is on this geocities link(and there is also a link from there to her current website)

http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html

 

and her Bontech website is at

http://www.BonnieGr.com

 

 

Ok, dear Roses, that is probably MORE than enough info to digest in one day

 

so i will say bye for now and God Bless

Cheri