So,So Confused!

[lilbit95]

Hello to all!

It's great that there is all this support and info on this website.

But, I just don't know where to start. Here it goes....

 

My 6 yr. old son has a working dx of TS and ADHD.

At the age of 3 we first noticed: hand flapping, face contortions, toe walking,

spinning objects. "We have always just said he was doing his thing."

And he has always been hyperactive, hard to get to sleep, etc.

He has never been sick that much, only going to the ped. for

the usual checkups. So we have just thought everything was o.k.

However, we did mention the hand flapping to his first ped. back when he was 4,

she said he was just fine.

 

And the hand flapping /face contorting has always been really noticeable when he gets

excited or he is being praised for something.

 

With a sick visit in the fall of 2005, a doctor first mentioned "does your child have a tic?"

He was doing the face contorting/hand flapping then.

We said we haven't had him dx'd, but that we suspected something.

 

Well since he has started school, he has had some problems.

He is doing fine with his schoolwork, except the teacher says he has hard time finishing

or staying focused. He would get into trouble for constantly touching others (ex. tapping, hugging).

 

Another incident, she reported he had an outburst of a swear word over an over.

She has mentioned that he will yelp out like a dog in the classroom.

(I know that these are considered "vocal tics".) We mentioned this to the teacher and

she said he needed a dx or these episodes would be considered bad behavior.

 

He is seeing a great pediatrician that has give him the working diagnosis of TS and ADHD.

He will have to go for MRI here soon to rule out other conditions.

And later on we are seeing the ped. neuro that specializes in TS, etc.

 

Right now I am in a tailspin about everything.

So please forgive me if I am darting all over the place here,

hopefully someone has some input.

 

Can someone with TS have a tic that is only really noticeable when they are excited?

How often does the vocal tic have to occur? (He hasn't had another episode

of the swearing, yelping.)

And is a constant humming, singing considered a vocal tic?

 

 

I am grateful for any input at all

Thanks, lilbit95

[Chemar]

Hi Lilbit95

 

yes, it can all be so overwhelming and alarming when one is starting out trying to get a clear diagnosis and understanding of these things!

 

There are sooooooo many underlying conditions that can cause tics in addition to Touirette Syndrome that it truly IS a good idea to gradually work thru them before settling on a TS dx (unless there is a clear family history of TS)

 

As many here have discovered, issues that can cause tics range from

PANDAS ( high strep in the system that is NOT just strep throat, but can be strep "lurking" and needs a blood test, not just a throat swab , for clear dx)

Heavy metals in the system like MERCURY, lead etc (mercury especially from childhood vaccines containing the preservative thimerisol)

PYROLURIA which is linked to a deficiency in zinc, B6 and other vitamins/minerals

FOOD ALLERGIES to maybe dairy, gluten or artificial ingredients like colouring, artificial sweeteners, MSG etc

ENVIRONMENTAL ALLERGIES like mold, dustmite, formaldehyde(in carpets, wood and upholstery) other chemicals (eg pesticides, chlorine, perfumes, house cleaners, toiletries, FLUORIDE in toothpaste etc) and also

SENSORY ISSUES (photosensitivity has been found to be a BIG tic trigger for many)

 

etc etc etc

 

this forum is loaded with info on these subjects, and I would also HIGHLY recommend the new book by Sheila Rogers that details all this. http://www.latitudes.org/forums/index.php?showtopic=1314

 

 

All of the things you have described are recognised Tourette tics too, both the motor and vocal ones, and yes, excitability and stress are known tic triggers!

Here is an excellent article by Sheila on tic triggers that may help you

http://www.latitudes.org/articles/finding_triggers.htm

 

 

The majority of posters here have found that an alternative approach (ie not using the standard prescription medications for tics and ADHD) has greatly helped......

 

please do keep asking questions and seeking knowledge, and if at all possible, try to find an Integrative doctor to work in conjunction with your pediatrician to advise you on all the things I have listed above. Conventional docotrs arent always aware of all this, whereas Integrative docotrs (conventianal MDs who have gone on to specialise in alternative/complementary medicine) tend to be. There is a thread at the top of this forum that gives help in finding Integrative medical doctors.

 

I would also like to recommend a very good website for you to learn more about Tourette Syndrome and its associated disorders

http://www.tourettesyndrome.net

 

Hope this gives you some things to ponder and investigate

[kim]

Lilbit 95,

 

I read 2 forums which are basically autism bds daily. Neither of my boys, ages 9 and 13 would be considered autistic, aspergers, or exhibit the main problems commonly asssociated with autism. But.....It sure appears there can be some common issues. My boys have both been diagnosised with TS, once by a Pediatric Neurologist, and Chronic Tic Syndrome by a pediatric allergist. Now a days, I really don't care what "handle" is put on the disorder. The chronic tic diagnosis, as with the TS diagnosis, were both based on information that I gave the Dr.s as no tics were visible at any office visits.

 

Two lists which you might find helpful also, are asd solutions@yahoo.com and EnzymesandAutism@yahoo.com. There are many similiar stories there, and many,many posts on what parents report to be beneficial in resolving hand flapping and toe walking. As Chemar mentioned, food allergies, yeast and bad bacteria overgrowth, and various supplements are common ones. An alternative Dr. or DAN Dr. are SO beneficial when trying to sort this all out. My experience with the reg. Dr.s has been horrible. I just don't give up on trying to make them understand that I'm not insane, and they need to PAY ATTENTION when a parent says I don't need medication, I need tests!!!!!!!! It has been really frustrating to realize that even my insurance offers something like IgG food testing, and they don't want to order it. My insurance covers chiroprators, if primary physician will do a referral. He won't. They don't recognise a Chiro. findings, is what I was told a week ago. He thinks adjustments can be harmful. Where was he when they were dosing my babies with mercury on the day of birth? Too bad they weren't as diligent then about possible risk of harm! Sorry, as you can tell, I have some pretty strong feelings on that subject.

 

My oldest son was a kindergarden hummer. This was before any motor tics were present. It happened on and off through 2nd grade. His teacher said she didn't think he even realised he was doing it, so I do feel it was kind of tic related.

 

Many feel that the younger you can get intervention for any medical issues, deficiencies, etc. the better. So, good for you in educating yourself.

 

So sad about the DX or considered bad behavior remark. Your little ones struggles are bad enough without having to worry about punishments for things that are beyond his control.

 

If you have a great pediatrician, maybe you can get him to order the strep titers, zinc/copper tests, and IgG allergie testing as just a starting point. Don't know how many posts you have been through here, but if you need more information on what I'm talking about, please ask!

 

Kim