Waxing and Mutterings

[Guest Carol]

This is my first posting to this site but hope this is the right place to get help, advice and to sound off.

 

My son was diagnosed with TS over a year and a half ago, he is 6 years old. Up until a couple of months ago his TS was mild but he got worse a couple of months ago and started to say words, before it has only been noises, these tics I find hard to take/listen to etc are the words and also the mutterings. He will says things under his breath, can't make out what all the time or sometimes he is repeating words from the TV that he is watching. Also he will just say a sentence when we are all quiet, again he says it quickly so I don't know what and when I ask him he says nothing Mum. I just worry so much that this will be hard for him to disguise!! and I see this more as what people with mental problems do! which is why I am finding it hard - ie what happens now. He is also jumping/skipping alot and doing fluttering things with his hands.

 

I know that this may be just a waxing period but would appreciate anyone else's experience with such tics.

 

He started taking clonidine about 10 weeks ago 50 micrograms of and I believed that to be helping but not so sure now or if indeed the dose should be increased.

 

I would appreciate any thoughts!!

 

Carol x

[Guest Jeff]

Hi Carol, We have found, as have many others, that tics can be reduced dramatically by eliminating food additives from our diet. The worst ones are Artificial Flavors (including "vanillin"), artificial colors (ex: Red #40, Yellow #5, etc.), and the preservatives BHT, BHA, and TBHQ. It can also help to give your child supplements to provide nutrients that he/she might be lacking.

It can be a big life-style change at first, but the results are worth it.

If you want more details about what we do, let me know and I can send you an email.

Good luck. Jeff

[Chemar]

Hello Carol

In addition to the very good advice that Jeff has given you about the artificial tic triggers, there is also a lot of help to be found in giving your son the supplemental vitamins and minerals that have been found to be beneficial for Tourette Syndrome. There are some other threads here that discuss the supplements in more detail, including these

http://www.latitudes.org/forums/index.php?...98ded1eda47ba9a

 

and this one, started by Bonnie Grimaldi, who has researched and developed excellent supplemental products that help enormously with TS

http://www.latitudes.org/forums/index.php?...98ded1eda47ba9a

 

I also want to encourage you to try, nomatter how hard it is, not to focus too intensely on your son's tics, or to try to get him to explain why he is doing or saying things.....this kind of scrutiny and attention often makes it much worse, because you are forcing him to focus on the tics or to try to control them and that is sometimes like shaking soda with the stopper on the bottle....something has to pop!! You son is having vocal and motor tics that just "happen"....he doesnt understand them himself, and is probably very confused and scared by it all.

Just try to be there if he needs you, but let him tic....HE HAS TO...it is not in his control, especially at his age. The muttering and repeating things he hears on TV etc, even repeating others words, and the movements you describe are very "normal" tics!

 

It is very possible that your son may also be experiencing a waxing phase in his tics for a specific reason...many children have increased tics as they enter the pubertal years.....sometimes a food or environmental allergy can set things off.....so can illeness or infection. I am not sure if you know about PANDAs, which basically involves strep related tic intensification etc.

There is a wealth of info available and some really excellent websites related to TS and its associated disorders.Let me know, and I will give you more links to some of these sites.

 

I know you will find a lot of caring people on this forum, and also a lot of very good advice and expert opinion, especially from Dr. Rogers. Latitudes/ACN is the very BEST website to learn about TS and it's treatment

 

I would also like to invite you to join the BrainTalk TS Forum as a support group.....you will find great support and experience there from people who are either parents of TS kids, or who have TS themselves.

I find that combining these two forums really helps me in my role as a mother of a 13 yr old with TS .

BrainTalk is at http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go

 

Carol, I know it is SO very hard to watch our precious children go thru this, but please dont despair.....there is a lot of hope and success in living with TS....my own son is a testimony to that....having gone from very severe TS/OCD etc nearly 4 yrs ago to mild symptoms now, and a full and meaningful life now!!

 

Most of all...just keep absorbing as much knowledge as you can and keep contact with forums like this one and the one at BrainTalk....having the support of others who truly understand is the best thing you can do for your son and yourself.

 

((((HUGS)))) to you and your precious son

[Guest Carol]

Thank you both for your kind words and advice.

 

Jeff, I would love more advice on the artificial triggers that you mentioned and would love you to e-mail me details. My e-mail address is: carol.eastwood@iow.gov.uk.

 

Chermar, many thanks for your links. I have tried Bonnie Grimaldi's formula but my son will not swallow the capsules and no matter how hard I try and disguise it in food the taste is always so strong that he will not take them. I have just sent off for magnesium taurate pills in the hope that this may be easier to put in foods.

 

I think I will post on Brain Talk too.

 

Many thanks

 

Carol

[Chemar]

Hi again Carol

glad to see you at BrainTalk too

 

Swallowing all those pills is the hardest thing for kids to do isnt it...even my son, who is now 13, hates it!! He is not on Bonnie's supps anymore as we just cant afford them at present, and so I have found good pure combo supps that provide him with the quantities that Bonnie recommends, but he gets to take less pills. I know that they are nowhere near as good as Bonnie's ......but they seem to be helping greatly and he finds it easier to take and my $$balance can handle it better.

 

There was a thread on BrainTalk recently discussing ways to get the supps in to young kids.......you've probably tried them all, but here it is, just in case you find something new

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005353.html

[Guest olga]

that sounds really interesting. i'd love to know a way to get supplements down my little one's throat. i couldn't get the link to work. could you cut and paste it here??

[Chemar]

Hi Olga

the BrainTalk servers appear to be down....so that is why the link wont work.....cant cut & paste either cos I cant get in either

 

Hopefully it will be back up real soon.

I will post as soon as it is

[Chemar]

BRAINTALK IS BACK UP

 

Here is the link again for advice on getting the supplements into your little ones

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005353.html

[Guest Carol]

Chemar, can you share with me what you vitamins etc you give your son?

 

Best wishes

 

Carol xxx

[Chemar]

Hi Carol

I posted them in the 2 thread avove here "Supplements" and "Helping Kids to take pills"

 

let me know if you need more info