Help-my son has motor & vocal tics

[dan]

I feel for what you're going through, Patty. My 8-year-old son had mild and occasional tics from the age of 4 or so, but the doctor told us that was very common and nothing to worry about. But around the time he turned 7 his tics got way worse and we noticed a lot of oppositional-defiant behavior as well. The tics got so bad that summer that we didn't know what to do, and then he began vocal-ticcing in addition to the motor tics. His vocal tics got so bad last fall that when his class was given a standardized test, he had to take it alone in a separate room because the noises he was making were bothering the other kids. After much trial and error and hundreds of hours spent researching on the Internet, he's at least 85% improved. His tics -- both motor and vocal -- are so mild and occasional that they're not noticeable, and his oppositional-defiant behavior is much improved as well. We took him to a DAN doctor, who gave him an exhaustive battery of tests, but the treatments he prescribed only made my son worse. We had him tested for Lyme disease, chronic low-level strep and similar infections, all of which can cause tics, but the tests turned out negative. The regimen that seems to work for our son is Bontech TS-Plus Control and EPA/DHA (it took these several months to finally kick in), Bifidobiotics (a probiotic), Country Life DMG (we've tried other brands but they don't seem to work as well), and guanfacine (a tiny dose, half a gram twice a day). We also give him vitamin C during the fall and spring pollen seasons, as he's allergic to pollen, which tends to make his tics worse. I'm convinced there's a relationship between my son's tic problem and his seasonal asthma. It may be that the asthma medication he's been taking (mostly albuterol and cromolyn in a nebulizer) for years triggered or exacerbated his tics. The acute worsening of his tics when he was 7 appears to have been due to his taking inhaled steroids for asthma, followed by Singulair. Hope this helps.

[kim]

Dan,

 

Congratulations on 85% reduction.

 

I just wanted to tell you that I thought your post was full of good info.

 

I know I have read of DMG on one of the autism bds, but could you explain what it is used for?

 

Kim

[dan]

Thanks, Kim. We got the idea to try DMG (dimethylglycine) on our son from Latitudes (http://www.latitudes.org/articles/letters_patients_families.htm). DMG is used a lot with autistic kids, and our son isn't autistic, but the parent in the Latitudes letter said her son, who wasn't autistic either, got good results with it, so we gave it a try and it seems to help a lot. Our son is about 55 lbs. and takes four 125-mg. tabs twice a day (with breakfast and dinner). I'm not sure how or why it works, but we think it's played a big role in the drastic reduction in his tics.

[patty]

Dan,

 

It is great to hear that your son is doing much better, and thanks for the detailed info. I really appreciate knowing what works for people.

 

Did you find your DAN doctor helpful in coming up with a treatment plan? or did you end up being your own investigator?

 

We have a similiar experience. My son started with homeopathic medicine under the guidance of a ND and made his tics worst. Now, I am back on chiropractic, taking calcium & magnesium and using a air purifier and it seems to be helping.

 

Do you know what helped with your son's vocal tic? As I think this is the most bothersome one.

 

Also, have you tried guanfacine alone before adding the various supplements? My son's neurologist also recommended using guanfacine, starting with 1/2 mg 2X a day. But I have not try it yet. What is your son's experience with it?

 

Thx!

 

patty

[dan]

Dan,

 

It is great to hear that your son is doing much better, and thanks for the detailed info. I really appreciate knowing what works for people.

 

Did you find your DAN doctor helpful in coming up with a treatment plan? or did you end up being your own investigator?

 

We have a similiar experience. My son started with homeopathic medicine under the guidance of a ND and made his tics worst. Now, I am back on chiropractic, taking calcium & magnesium and using a air purifier and it seems to be helping.

 

Do you know what helped with your son's vocal tic? As I think this is the most bothersome one.

 

Also, have you tried guanfacine alone before adding the various supplements? My son's neurologist also recommended using guanfacine, starting with 1/2 mg 2X a day. But I have not try it yet. What is your son's experience with it?

 

Thx!

 

patty

Patty,

We were very impressed with our DAN doctor, who ordered a whole battery of metabolic and other tests, on the basis of which he prescribed various supplements and other treatments. But when all was said and done, those treatments actually made our son worse, so we stopped them.

 

My sense is that this doctor had a lot of experience treating autistic children but little if any experience with tic disorders, and he was extending the theory behind treating autism to treating our son. Can't blame him for trying, as it's all he had -- but it didn't work, at least in our son's case. So we ended up being our own investigators.

 

Since my son developed both motor and vocal tics and we've combined several things to treat him, we're not sure what's helped what. Vitamin C -- at least during the fall and spring pollen seasons -- seems to help his vocal tics, which his pollen allergies tend to exacerbate.

 

We've never tried guanfacine alone, except for a period of several days when we had to stop the other things in order to get a blood sample but he continued on the guanfacine. During that time his tics got noticeably worse, and they improved as soon as he resumed the supplements. So it appears that guanfacine alone was not responsible for our son's improvement -- though we think it's helped, especially with his hyperactivity, which had been a problem.

 

I forgot to mention that, based on the advice of someone at the Edgar Cayce center in Virginia Beach (the Association for Research and Enlightenment), my son has also been getting treatment from an osteopath who does the old-fashioned manipulations, and for all we know, that might have contributed to his improvement.

 

Curiously, while acupuncture treatments prior to each pollen season had seemed fairly effective in staving off his asthma attacks, after he began vocal-ticcing at age 7 we noticed that the acupuncture seemed to make the vocal tics worse, at least temporarily, so we've stopped acupuncture treatments completely.

 

Now we're wondering, though, whether the guanfacine is what's causing his occasional visual hallucinations. I'm going to do more research on that.

[Shannie1217]

Hi Patty-
This is strange. I'm sending you a message about a post you made in 2006 regarding your son and his tics. Yay Internet! Anyway- I am right where you were when you were brave enough to make your initial post. I'm living a nightmare with my son who has vocal tics (he's 6) and eye blinking. I currently have him on a dairy free diet with a Magnesium supplement (we haven't seen a Neuro yet- appt in October). They have decreased, but still very much there in certain situations. Now that some time has passed, can you please give us an update on your son? Did the tics ever subside? Are they worse? What ended up working for you? THANK YOU SO MUCH FOR ANY RESPONSE!!

Shannon

[mge_1]

Hopefully all is well. Can you please give us an update? Thank you