dan

Thanks for this, Giselle! Dan

Thanks much, Claire and Kim. Your feedback was very helpful. Dan

Thanks, Chemar. I didn't know about nativeremedies.com and will check out their allergy help remedies. Thanks, Mrs. D. Each Bontech TS-Plus Control capsule contains 20 IU of vitamin D, but it doesn't list the source of the vitamin D. He's taking 12 capsules a day and so is getting 240 IU of vitamin D per day. I don't think Bonnie has posted the vitamin D addition on her website yet. The vitamin A in the capsules is beta-carotene (250 IU per capsule). It's not hard for us to tell when our son is acting out, and his recent ODD behavior doesn't fall into that category but rather seems to be systemic and has been accompanied by a bunch of other symptoms that include hyperactivity, post-nasal drip, waking up earlier than usual and wetting the bed.

Our 8-year-old son's tics have gotten much, much better over the past year, to the point where most of the time they're either nonexistent or not noticeable. The bouts of oppositional-defiant behavior (ODD) that were a very troublesome part of his tic picture last year had also gotten much better. But about two weeks ago, we noticed that his ODD began to resurface, and last night we got a phone call from his teacher saying that he's recently begun acting oppositional at school. We can't think of any reason for this sudden spike in ODD, other than fall allergies. The ODD spike has come concurrently with post-nasal drip (which in him usually comes from pollen allergies) and also with some hyperactivity. We've been giving him extra vitamin C for the allergies, but it hasn't helped the ODD. One of the things that seems to have helped our son's tics and related problems is Bonnie Grimaldi's vitamins (also DMG, EPA/DHA, probiotics, avoiding certain foods, low-dose guanfacine, and old-fashioned osteopathic manipulations). I noticed a few weeks ago that Bonnie just added vitamin D to her TS-Plus Control formula, which didn't have it before. That's the only other change we've introduced in recent weeks. Could the vitamin D be the cause of his ODD? We're also in the process of weaning him off the guanfacine (Tenex), but his ODD spike started a week before that, so it couldn't be the cause. We're at our wit's end here. His ODD has gotten quite bad again; last year it alienated his classmates and drove his teacher crazy. It's like he's full of negative energy that has to be released. The neurologist/psychiatrist team that examined him said it's systemic rather than psychological, and it sure seems that way to us, because most of the time he's fine, but when he gets into an ODD state, he can't be reasoned with and thinks he's done nothing wrong. Does anyone have any suggestions or thoughts?

Chemar, What supplements did you find helped your son's OCD?

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.

I just did a Google search of "guanfacine" (Tenex) and "hallucinations" and found a bunch of studies suggesting that guanfacine causes auditory and visual hallucinations!

I just Googled "guanfacine" (Tenex) together with "hallucinations" and saw a whole bunch of studies that suggest guanfacine causes auditory and visual hallucinations!

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.

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.

My 8-year-old son has had seasonal asthma to pollen (spring and fall) since age 3, and we've noticed that his tics get worse when the pollen is bad.

Hi everyone, For whatever it's worth, my 8-year-old son has had occasional hallucinations, both aural and visual. The aural ones started a year ago and occurred primarily at night while he was in bed but not asleep. He said he heard voices arguing with each other. I don't think he's had any of these for a while now. The visual hallucinations are more recent and started out as human figures he'd see out of the corner of his eye, but lately he's had a few where he saw a figure straight-on. That's what happened this morning, when he saw the dark figure of a man with enough detail to see the hands. He was somewhat upset by this but not freaked out or anything. I explained to him that it's nothing to worry about, and that the hallucinations are caused by his brain in the same way as the tics are. That's my understanding of it. Other than fits of oppositional-defiant behavior, which seem related to his tics, my son appears to be quite normal psychologically and doesn't at all fit the profile of schizophrenia or anything like that. He was examined thoroughly by a psychiatrist as part of a team evaluation done with a neurologist, and the psychiatrist said my son was very normal and happy except that the tics were making him miserable. That was a year ago, right after his tics emerged as a major problem (he'd only had mild ones before), but now his tics are much, much better, I'd say at least 85% improved and not noticeable by other people. His oppositional-defiant behavior is much better too. The combination we've found that seems to help him is Bontech TS-Plus Control, EPA/DHA, Bifidobiotics (a probiotic), Country Life DMG (we've tried other brands, but for some reason they don't seem to work as well) and guanfacine (a tiny dose, 1/2 gram twice a day). We also keep him off corn, cheese, sweets and artificial anything.

Hi everyone, For whatever it's worth, my 8-year-old son has had occasional hallucinations, both aural and visual. The aural ones started a year ago and occurred primarily at night while he was in bed but not asleep. He said he heard voices arguing with each other. I don't think he's had any of these for a while now. The visual hallucinations are more recent and started out as human figures he'd see out of the corner of his eye, but lately he's had a few where he saw a figure straight-on. That's what happened this morning, when he saw the dark figure of a man with enough detail to see the hands. He was somewhat upset by this but not freaked out or anything. I explained to him that it's nothing to worry about, and that the hallucinations are caused by his brain in the same way as the tics are. That's my understanding of it. Other than fits of oppositional-defiant behavior, which seem related to his tics, my son appears to be quite normal psychologically and doesn't at all fit the profile of schizophrenia or anything like that. He was examined thoroughly by a psychiatrist as part of a team evaluation done with a neurologist, and the psychiatrist said my son was very normal and happy except that the tics were making him miserable. That was a year ago, right after his tics emerged as a major problem (he'd only had mild ones before), but now his tics are much, much better, I'd say at least 85% improved and not noticeable by other people. His oppositional-defiant behavior is much better too. The combination we've found that seems to help him is Bontech TS-Plus Control, EPA/DHA, Bifidobiotics (a probiotic), Country Life DMG (we've tried other brands, but for some reason they don't seem to work as well) and guanfacine (a tiny dose, 1/2 gram twice a day). We also keep him off corn, cheese, sweets and artificial anything.