Diagnosed with TS

[leonor]

Hi, my name is Leonor. My nine year old son was just diagnosed with TS on the 4th of May. He has been having ticks since kindergarten. He started with stuttering, eye rolling, arm pulling, finger stretching, etc. At the beginning it used to be one tick at a time and it now has progressed to four or five at a time. Yesterday he started with a vocal tick. I have been researching TS for the past few years but I would like to get some personal opinions from people that have family members/friends experiencing TS themselves.

[Chemar]

Hi Leonor and welcome

 

Let us know what info are you looking for and we will all try to help as much as possible

 

I have a son and husband with TS

My son was on prescription medications for the first year after he was diagnosed at age 10......but we found they actually only made life worse for him because of the many bad side effects.

 

So now we use a combination of natural treatments for him and it has had a remarkable effect in reducing the severity and frequency of his tics.

 

Do you have a family history of TS?

 

looking forward to your reply so we can all rally round to give you the support and info that you need.

 

Cheri

[leonor]

Hi Cheri , thank you so much for getting back to me so fast. I would like to know how to get in contact with a doctor that uses natural remedies. My son's tics are not so severe that he hurts himself or that hinder his school or play. but I want to be able to be prepared.

[Chemar]

OK Leonor

 

there is a thread posted to the top of this board that provides some useful lists for finding doctors who support natural treatments...

here is the link (if you dont find one in your area, or need more help working thru it...LMK )

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

[Andy]

Hi Leonor, My five year old boy was diagnoised at 4 years of age but we suspected something was wrong at two years of age. Diet and the vitamin B family with fish oil seems to help. The key is to treat the cause and not cover up the symptom. We are trying to find it and hope you the best.

[Guest Jeff]

Andy - one comment about the fish oil. Many people react to fish oil. I know, because it happened to me. My daughters and I follow an elimination diet to control our tics. I tried taking fish oil and noticed an increase in my tics. I soon began to hear stories from many others who experienced the same reaction. I stopped taking it.

My daughters and I have great success by eliminating artificial colors and flavors, the preservatives BHA, BHT, and TBHQ, and trying to minimize Corn Syrup.

If we stay "clean", our tics are not an issue.

Jeff

[Guest Kat]

undefined Hi all! I'm thinkin' that I should've probly come here 4 years ago when my husband was diagnosed with TS.

I'm totally baffled.......I thought TS was tics (both physical & vocal) etc., but when my husband, Donnie, "comes undone", it's far more.

He'll start with slapping his face and doing what I call his Mr. Ed impersonation...if he takes a TRAZEDONE right away and a nap, he's usually ok...but sometimes he winds up like a lost 6 year old child...no idea of who or where he is (really scary if he's out driving somewhere!), totally disoriented, and this is accompanied by excruciating headaches. Is this normal? He also takes CLONAZIPAM (and HALOPERIDOL previously). I've never heard of TS'ers "coming undone".

[Chemar]

Hi Kat

 

the ONLY time my son ever "came undone" was when he was on meds (haloperidol=haldol)

As your husband is on a combination of strong medications, it may well be that the meds are having side effects.

 

They produced "medication induced psychosis" in my son.

 

Since he came off meds and started these natural treatments, he has gone from frighteningly severe TS to vey mild.

 

Do try to gradually read thu the relevant posts here and also the many articles on TS that you can reach from the latitudes homepage....especially the "Finding triggers for tics" article.

There are Soooooo many things that can make tics and behaviour worse, and it may well be that some of these are triggers for your husband too.

 

Stay in touch...this is a great place for info, and lots of caring support too!

[Guest Guest_teach1]

Hi, I just read the last few posts, and got nervous when I read about people using haldol. I was on it for 20 years for TS, and now have dystonia- blepharospasm-constant squeezing shut of eyes, facial spasms, and neck twisting (very painful). It is all caused by the haldol, and is irreversible and for life- so I'm getting used to a whole new list of problems. So please be careful of the drugs you take for this condition!! I learned the hard way.. teach1

[Andy]

Thanks guest teach for your information, The first doctor we saw when my son was two said that he will out grow his condition. The next two "specialist" suggested medication treatment when he was four years of age. I am glad that you shared your information and my heart goes out to you. Just know that you helped me with staying on the track of treatment that we are on for our son. I would also like to thank Jeff for the heads up on fish oil, I will have to montior that and chart if there is a negative correlation. I never knew about the strawberry and grape thing. My son has had a hard time of it for the last month, now I will see it any of the three, which have been in his diet as of late, may have been the cause.

[Claire]

Andy,

 

I am not sure if you read the other threads, but some kids do have a reaction to fish oil. My son does great on it though and it can be of high value. Our doctor said to add one supplement at a time.

 

I think it is unfortunate that some doctors recommend meds at such an early age. Tics aren't harmful, and if the issue is teasing, they don't have to deal with it until later. On braintalk, they posted that many of the meds leave some permanent issues with tremors or something.

 

I hope you will peruse the threads here, they helped me a ton. While many of us have different triggers and solutions, there are definitely clusters of more common ones. Most of us avoid artificial ingredients now, some avoid the salicytes (grapes, strawberries, etc..)--but that is a trial and error thing. Many many foods can be triggers and that is quite variable.

 

Claire

[Guest John]

I'm new here and have been reading the Threads. This is very interesting.

Teach1 I read some of yours and was sorry to learn that your probs have been compounded by the medications you were prescribed, which were supposed to help you! Just thought I'd mention that I read on here in one of the threads where someone mentioned their experience with Body Talk. There was a quote from a lady who I think said she was relieved of the same condition you have, through the treatment of Body Talk. I have also had excellent experience with Body Talk and through it even discovered I had parasites which thankfully I'm now rid of. It really helped me with headaches and other problems. Though I would mention this. Perhaps you might explore this treatment, especially since they have said that your condition is permanent, you never know. Wish you luck Teach1.

[leonor]

HI EVERYONE, I JUST WANT TO LET YOU KNOW THAT I HAVE BEEN SEARCHING ALOT OF SITES AND NONE COMPARES TO THIS ONE! ALL THE INFO THAT IS ON THIS SIGHT CAN MAKE HEAD SPIN BUT I KNOW I CAN GET POINTED IN THE RIGHT DIRECTION. ANYWAY,MY SON HAS AN APPOINTMENT WITH HIS PRIMARY DOCTOR AND I WOULD LIKE SOME ADVISE ON WHAT QUESTIONS OR TESTS THAT I SHOULD ASK FOR. I AM GOING TO SEE IF SHE WILL DO ALLERGY TESTING,BLOOD WORK FOR METALS AND YEAST. I KNOW THERE ARE MORE BUT I NEED TO KNOW WHAT WE SHOULD DO FIRST THEN KEEP WORKING OUR WAY THRU. HAS ANYBODY EVER HEARD OF USING THE GONSTEAD METHOD OF CIROPRACTIC TO HELP TS? AS I'VE BEEN READING THERE SEEMS TO BE ALOT OF MATERIAL ON PRESSURE ON THE BRAIN STEM. FOR YEARS MY SON HAS BEEN COMPLAINING OF PAIN BY THE BASE OF HIS HEAD. WHEN I WENT TO GET IT CHECKED OUT HIS FIRST VERTEBRAE IS WAY OFF KILTER. THE GONSTEAD METHOD MANIPULATES THE VERTEBRAE INTO PLACE. SO FAR WE'VE WENT FIVE TIMES AND ITS STARTING TO STAY IN PLACE-PLUS HIS PAIN IS NOT AS BAD ANYMORE. THANKS, LEONOR

[vickistg]

Hi! I'm new to all this. My 8 y.o son has not yet been diagnosed, but his verbal tics have worsened considerably in the last few weeks and we are planning to take him to the Dr. this week. He is homeschooled so that's not a problem, but he is starting to be teased at church activities and I can't have him sit in service as the tics have gotten quite loud. I know that molds are a problem in our home and we are looking for a new house. I've also noted that the tics worsen in our car. Not anyone elses, just ours. He can go hours in someone else's car with little or no problems. The car is fairly new and doesn't have any mold that I can detect. I am very allergic to molds, so I usually know when they're present in any real quantities. Any ideas for herbal treatments or detox regimens? He's the youngest and it's starting to cause problems with his brothers. They try to understand, but it makes life challenging when you can't have a conversation over the tics. Help!!!!

[Claire]

leonar, vicki

 

leonar,

 

I am not familiar with that chiropractic method, but if it eases his pain, it sounds great, in addition to other benefits you might see.

 

I posted a link on the tests (and labs that run, along with costs) them that my son's specialist ordered for him, and it is still on the top page here, called: "DAN/EM doctor total costs for board".

 

Good luck!

 

Vicki ,

 

My son had a bad reaction to molds (we believe we have now gotten rid of the sources). He also had a reaction to my husbands car. Other posters have commented on synthetic fibers causing problems. Now I am down on carpeting in general , and we have hardwood floors throughout our house.

 

As for detox programs etc. it may be important to run diagnostic tests first, so that you can customize a program for your child. If you will read through the threads here I suspect that some of the comments will generate ideas for you as to what might either be triggers for your son or what might be underlying health issues that need to be addressed. Feel free to post your questions, we have a very helpful group here.

 

Claire