susanna

Thanks for the "heads up". I've actually seen that at my pharmacy as well. but I have a feeling the flavor is artificial and I try to minimize the artificial stuff as much as possible. We were actually just at the peds a few weeks ago...I thought my son had contacted strep again (thankfully the test was negative and we did not experience any tics) In any case, the doc was willing to prescribe a different antibiotic if it was necessary since my son made sure to share his dislike of augmentin with him

My older son (age 9 1/2), who I've always suspected of having some OCD tendencies, started exhibiting what look like tics, however, I think they may be more OCD than true tics. (For those who don't know, I orginally came to this site searching for help for his younger brother who had a sudden explosion of tics...I believe he has PANDAS...for him the tics are under control at the present.) During the past school year we, as well as his teacher, noticed eye blinking in our older son...had his eyes checked out by a doctor and they were fine. For a while, he also had a mouth stretching tic....this started when his lips/mouth became chapped....even after the chappiness went away, he would still do the mouth stretching....it did eventually go away for a while, however, during the summer, the mouth stretching has returned on and off, and the eye blinking has gotten worse. The eye blinking went from squeezing both eyes shut, to now only squeezing one eye shut....he actually stops talking each time he "winks". In talking to my son about this, he says he can control it, but it "feels good" to do it, hence my suspicion that it's OCD related. Anyone have any experience with this type of OCD tic? When we went through testing for my younger son I also had my older son tested...he had many of the same food sensitivies and issues as his younger brother. Where we have been pretty successful in adjusting my younger son's diet for his food sensitivities, we have not been as successful with the older son. I do my best to keep the artificial junk away, and do some basic vitamin supplementation. What I guess I am looking for are recommendations of what supplements, if any, you have had success with for this type of OCD tic. I do have a homeoptahic pediatrician who has worked with us on testing, etc, and I do plan on scheduling an appointment with her for this issue, however, I would like to look into any supplements which have the potential of helping this "tic" before I get in to see her. Thanks Susanna

Welcome Evie Know that there is hope. My son also had a sudden onset of tics over a year ago at just over six years of age. Antibiotics worked for us in reducing the tics, but it did not completely eliminate them. Tried Duracef first...son had a reaction...good old Augmentin ended up doing the trick. We always knew when strep was lurking because the tics would reappear/increase with no additional symptoms (no sore throat, no fever, etc but we would get a positive throat culture)...antibiotics (Augmentin) worked each time. Behavioral and "anger management" issues became (are) a larger problem than the tics. What made a significant difference for us was getting him tested for food sensitivities, eliminating those items he tested sensitive to, and eliminating artificial colors, flavors and preservatives. We found that the foods he craved the most are those he is sensitive to, with wheat being a huge culprit for him. We got him to "buy into" the food elimination by setting an ending date which happened to coincide with his birthday....we strictly followed the diet for over 90 days. It was amazing how well he followed his new diet....he would go to the supermarket with me and read food lables....he would go to his grandmothers and read labels there as well....he knew what he could and couldn't have. He was amazing! Luckily I have a Whole Foods and a Trader Joes in my neighborhood and was able to find healthy alternatives for some of his favorites. I did also talk to his teacher about what was going on and provided appropriate snacks for him for her to keep on hand so he wouldn't feel left out if the teacher gave out snacks. There was an incident toward the end of that 90+ day period where we did let him "cheat" at a brunch...his behavior changed right before our eyes....it was amazing how "good" food (milk, eggs, pancakes with syrup) made such a difference....it wasn't that he was cheating on cookies and candy....and made a believer out of my husband who up until that time thought I might have been "losing it" for thinking that good-for you foods like whole wheat had anything to do with what was going on with our son. After his birthday we became a little looser with the diet because I had promised him and he wouldn't let me forget that promise...the problem is that allowing him to "cheat" every now and then became more and more frequent and these days cheating is the rule rather than the exception since I decided to pick my battles. I'm trying to get him back on track, however. The tics aren't really an issue...we've only seen minor facial tics in the spring which I believe were related to his seasonal allergies, and minor tics reoccur with illness. The problem again these days is his behavior. Also, he doesn't look as good as he did when he was eating "better" It's also unbelievable to see him crave bread....it's like an addict looking for his next fix. I'm slowly trying to ease back into the diet....wheat is the first major thing I'm trying to get him to give up...we'll work on the dairy, eggs, etc later. Unfortunatley we never found a good wheat free, yeast free bread substitute that he liked. All this time, however, I have tried my best to stay away from the artificial "junk" ...that is another huge trigger for him. You say your son craves sugar...that could indicate yeast...it's definitely worth looking into. Food is an issue for so many here. We also did work with a pediatrician who had recently gotten into homeopathy...we did treat homeopathically and she more importantly helped me navigate the numerous tests I learned about on this site. Having found a traditional doc who is open to alternative treatments has been a blessing to me. I'm supposed to be supplementing as well, but he fights me on most of the supplements....I am able to get in a good multi-vitamin into him, but that's about it. I find the soiling himself issue you brought up interesting. My son also has a variation of this issue. Although he doesn't hold it in and get constipated, he ALWAYS has issues with getting his undewear soiled and I was still wiping for him until recently...he has finally undertaken that job, but he hasn't quite mastered it. It amazes me that this could be related to the PANDAS/tic issue...I guess I need to look into this further. OK, I think I rambled enough with my experience. Bottom line is know that there is hope. Having found this site is a good first step...it was for me. Knowing that it's PANDAS is half the battle. Read through the postings here.....Ronna especially has firsthand knowledge of dealing with PANDAS. Claire has some good posts on testing and some informal surveys of what have worked for parents here. Some of this is trial and error....as you've probably already figured out, what works for one child may not work for another...they each have their own unique set of issues. If you can find a doctor to work with you, get your child tested for food sensitivities....the thought of a food elimimation diet to determine the triggers was ovewhleming for me. Yeast would also be something to test for right away given his sugar craving and the necessity of the antibiotics. And don't hesitate to ask questions. Lots of great people here willing to share.

crabbywun Where in PA do you live? I too live in PA nad have found an alternative doctor who has been helping me, with success.

My son's asthma is pretty much under control, however he is having a HORRIBLE time with his allergies...congestion, red, itchy eyes, etc. He's been suffereing for a few weeks now....It's never been this bad. Spring and Fall are his usual bad times for asthma, but not this year. We've had to use his inhaler only once. He only has some mild facial tics these days...probably a combination of the seasonal allergies and "cheating" on bread and dairy.

We received a Tourettes dx at our first neuro appointment almost a year ago. I believe he has PANDAS. At this point the dx doesn't really matter to me. Any sort of illness tends to set off the tics as do seasonal allergies to a lesser extent. We only do antibiotics with a positive strep diagnosis and that seems to be working for us. The elimination of artificial junk and initially eliminating and subsequently limiting foods he tested as positive to have also been beneficial.

I just received the pyroluria test results for my sons today. We had the testing done by Direct Healthcare Access II Lab www.pyroluriatesting.com My son who tics had a reading of 29.0 (High) The specimen was not frozen when received indicating that this result was on average 27% lower than what it would have been if frozen (approx 40). I also had my older son tested. He doesn't tic however I suspect he is borderline ADHD and seems to have some of the physical symptoms of the disorder. His result was 8.75. His specimen was also not frozen, so his result when corrected could be as high as 12 which would put him in the borderline category. I haven't spoken to our doctor yet to determine supplementation dosages. Also, both boys had the OAT test and both tested negative for yeast. And as Claire has already mentioned both boys tested low in glutathione. We've decided to do the DMSA challenge next to test for heavy metals.

Hi Gina I had these very same questions a few months ago....I bumped that thread for you. Susanna

bump

Frank Which homeopathic remedies does your wife usually use for colds? Susanna

My son is sick with sore throat, runny nose, coughing and some congestion. I believe he is a PANDAS kid. Tics have been pretty much under control with diet and vitamins. Illness/Strep will set off the tics. I noticed a few facial things...not sure if they are "real" tics or just the result of the runny nose. In any case I took him to the ped this morning....rapid strep test came back negative (as it usually does)...results of the culture should be back tomorrow. Ped suggested Sudafed or other child's cold medicine for his runny nose and congestion. I am very leary to give him any of that stuff...both because of the artificial colors/flavors they usually contain, as well as I am unsure how he will react to the med. So, does anyone have any natural remedies to help the symptoms? I have chicken broth simmering on the stove for him, purchased some decaf Green Tea, Ricola Natural cough drops and Vitamin C drops for him to suck on, and plan to have him gargle with salt water later (he's sleeping right now). Anything I can do for the runny nose? Any other suggestions? Thanks!

My son's doctor has recommended metals testing for my son via a DMSA Challenge test. I don't know much about this. I did read that problems could arise if the metals were chelated from the body too fast. Does anyone have any experience with this test? Were there any issues?

Helen I would definitely take your daughter in to see the doctor and insist on a throat swab for strep even if she doesn't have the classic symptoms. My son's tics were initially also brought on by strep. A few months ago he started ticcing again after having been virtually tic free for months. On a hunch I took him in for a culture...the doctor did it just to appease me since his throat looked fine and the doc thought it wasn't strep....sure enough it came back positive, much to the doc's surprise! (luckily, this doc knows about PANDAS) Within a few days of starting the antibiotics the tics subsided. I should also mention that we also had been eliminating fooods he tested as sensitive to (dairy, wheat, soy, yeast, citrus, eggs) and have eliminated artificial "junk"....but when the tics reaapeared I was pretty sure he hadn't cheated on his diet, thus the hunch it was strep. Susanna

Did any one catch this show? For those who don't know, Tim Howard is the Manchester United goalie who happens to suffer from TS. Although the interview wasn't specifically about TS, it was brought up and discussed. He talked about some of the myths that those in the UK printed in the papers when we was first hired and it was disclosed he had TS (i.e swearing, disabled, etc). Over time the fans in Manchester seemed to have embraced him. Tim also mentioned how he is med free. Too bad that he's a relative unknown here in the US...(he walks around his hometown here in the U.S. and no one recognizes him).... as he could go a long way in dispelling some of the myths and stereotypes of those who suffer from TS and tic disorders. He's also a great rolemodel for our ticcing kids, and quite frankly, for all kids given some of the sports figures some kids idolize

Update on my son We eliminated the foods he tested as being sensitive to for 90+ days. My son was a champ in not ingesting the foods he wasn't supposed to eat, he would read labels in the grocery store, at people's houses, and even if I said it was "ok" to have something which he knew he wasn't supposed to have, he would fight me on it and wouldn't eat/drink it. I had told him we need to follow this diet until his 7th birthday, which just past a few weeks ago, and that we could then try out the foods he hadn't been eating. Tics hadn't been a major issue for us lately...behavior was more of an issue. As we got into December we got a bit more lax with the diet, so he had a piece of bread here, a glass of milk there, maybe a slice of pizza, even a scrambled egg one day....we didn't go overboard and there weren't significant/noticable changes in behavior that we noticed as a result...maybe an occaisional facial tic which usually showed up after having something with artificial junk or preservatives. And then came yesterday. We took our boys to breakfast where they have a breakfast buffet and an omelet and belgian waffle station. My boys had been to this place before (before the food restrictions) and were really looking forward to it. So I decided to let my son eat whatever he wanted. He had scrambled eggs, bacon, milk, a pancake and a belgian waffle with butter (he decided to forgo the syrup..he knew it wasn't real maple syrup which he nows prefers ) He ate all things he was sensitive to. Right before our eyes his behavior changed! It was such an extreme change it had to be the food. The very bad behavior continued for the rest of the day at his cousin's birthday party. He also kept craving the offending foods (mostly wheat based) It were as if he were addicted to the stuff. He also had a few facial tics to accompany this behavior, but the behavior was much more troubling than the tic. I guess his body was just overloaded by the offending items. I really don't think it was just his regular misbehaving...he misbehaves plenty...this was different. Needless to say we are back on the diet today. He's already acting much better today...still an occasional facial tic or two....and back to his "normal" level of misbehavior. (he's actually a very sweet and loving boy...just a short temper at times) Bottom line, the food sensitivities are a real issue for us and eliminating the offending foods make a difference. I have a feeling wheat is the big culprit for us. After having him back on the diet for a while I want to challenge him with the offending foods again...but this time one at a time to see which ones are still an issue and which ones we can add back occasionally.

Hmm, I'm probably not doing enough. I am currently giving him a calcium supplement from Whole Foods (Country Life Tall Tree brand) that contains 25 I.U. of vit D, 250 mg calcium (as calcium carbonate, calcium citrate....it doesn't say how much of each), and 50 mg of magnesium (as magnesium oxide, magnesium aspertate) 250 mg calcium is 25% of the RDA for children over 4 (per the label) He also gets a small amount from his multivitamin (25mg), and the amount he gets from his juice...per the juice label each 8 oz of juice provides 10% of the calcium RDA. Unfortunately he won't eat the leafy green veggies. I guess I really should get him tested so I know exactly what I'm dealing with...in the meantime I'll probably double his supplement. Once again, thanks for sharing.

Claire How did you determien the calcium deficiency, and subsequent non-deficiency? Was it the Spectracell test? How much do you supplement? I realize what is "right" for youre son is probably not "right" for mine, but I'm just trying to gauge a range. Also, what brand of Calcium do you use?

For those of you whose children have a dairy sensitivity, how do you insure that they are getting enough calcium? My son also has a citrus sensitivity so OJ w/ calcium is out. I have found a grape juice with added calcium, and have been giving him a calcium supplement, just not sure if it's enough. I'd love to hear how you deal with this.

I agree with your choice, Diane. I too opted not to get my son a flu shot. In the past I have gotten him the shot because he suffers from asthma. I thought the risk from the shot was worse than his not getting the shot. His astma has gotten better over the years, so that did help me in making my decision.

My 6 yr old son who was diagnosed with TS also had major "anger management"/rage issues. The elimination of artificial junk had a positive impact on his rages (and his tics). Since then I've also had him tested for food sensitivies....we've been eliminating the foods for which he tested positive as being sensitive to for the past two months...still not sure if that's making any difference other than the fact that he's eating healthier in general and has slimmed down a bit. He still has anger issues at times, but not nearly has bad as they were before eliminating the artificial stuff. Tics are a non-issues these days, other than a short flare up which ended up being related to illness/strep.

First off I realize I have the wrong publication in the title of this post...it should be the Wall Street Journal, NOT the NY Times. (can I change this???) In any case, I was just handed an article from yesterday's Wall Street Journal (pg D7) "Strep Throat Ties to Behavior Problems is Studied" (Sorry I'm unable to figure out how to put in a link to the actual article....if anyone know how to do that please feel free) But in any case, I'm excited that a "mainstream" publication is finally getting the word out of the possible link between strep throat and tics. The article discusses PANDAS and the studies currently being undertaken by the NIMH. Although it seems to cover primarily OCD, it does acknowledge the tics connection as well. Numbers for the NIMH, the Obessessive-Compulsive Foundation and the Tourette's Syndrome Association are provided.

Thanks for the congratulations. It still hasn't really sunk in yet, but I do find myself being much more aware of everything I put into my mouth. So from the limited feedback it seems that breastfeeding in and of itself is no guarantee that a child will not tic, yet it makes me wonder how much worse things would be if they weren't breastfed. Also, what a mom is ingesting would also play a huge factor. Although I can't prove it, I really think the early introduction of the soy formula played a roll in my son's sensitivity to soy as that is the only soy he has ever ingested, other than small amounts which may have been hidden in other foods. If all goes well I definitely plan on nursing this child as long as I can.

As has been previously pointed out, lots of our kids with tics seem to have food sensitivites, especially with cows milk and soy, as my son does. I was wondering if perhaps if being nursed as an infant vs being formula fed would have any impact on later sensitivities. The reason that this is of interest to me is that I find myself pregnant with child #3 Surprise, surprise! In addition to all the things I find myself worrying about having a baby at my "advanced maternal age", the possibility that this child could also end up with a tic disorder is another thing I add to the list and would want to do anything I can to minimize that possibility. So I'll start. My oldest son, who does not tic but is possibly borderline ADD/ADHD and has a few OCDish behaviors was nursed for his first three months of life, but I did supplement with formula during that time after the first week. He wore me down that first week and unfortunately I didn't have the support around me to know that if I had stuck with it, it would have gotten better. I did BF him more than formula feed him. My younger son who tics, was also BF and formula fed for three months. I started supplementing with him right from the beginning. My older son, who was also a baby himself at the age of two, would get very upset when I would nurse the baby, and at the time I didn't want to traumatize him any more so I would sometimes formula feed. I did have to switch to soy formula from regular formula since he had eczema and the soy formula seemed to help with that. Now I wonder if that was the start to his soy sensitivity. Logic tells me nursing is best if one is able to do it, and I want to be able to do that with this child for as long as possible. Just wondering if there are any common threads here.

Hello Dara and welcome Many of us here know all too well how you are feeling, but there is hope. My 6 year old son started ticcing in early April. I live in the Phila suburbs and Dr Brown at CHOP was one of the ped neurologists recommended to us as well but I couldn't get an appointment with him until September!, so we decided to go with another Dr that was recommended. In any case the diagnosis was TS and the doc really didn't offer much other than the suggestion of meds when he was older. Luckily I found this site and started doing some things on my own (eliminating artifical, colors, flavors, preservatives, high fructose corn syrup) and also found a pediatrician who practices homeopathy to order tests and help guide me. By September my son was tic free, although we're still dealing with some anger management issues. One of the things that jumped out at me about your post is that you mentioned that your son was sick with several colds when he started ticcing. Has your son been tested for Strep? Have you heard of PANDAS? This appears to have been my son's trigger last spring. Blood tests at the time we he started ticcing showed elevated ASO titers and although the rapid strep test came back negative, the one that was sent out for culture came back positive. He was treated with antibiotics. Within the past week he started with some minor facial tics again. Sure enough, even though he didn't have the classic strep symptoms, only cold symptoms, he tested postive for strep and I have him on antibiotics. Ronnas is our PANDAS expert. If you look at the thread I recently started about my son being sick with a cold and seeking advice Ronnas has posted some great links to PANDAS information. I recommend you read them and see if anything "clicks". If you want to e-mail me privately I could also share with you my experience with my homeopathic doctor who is located in the Phila PA suburbs. You've found a great place here and there is hope for your child. Susanna

Before I had gotten the strep diagnosis my homeopathic doctor suggested an herbal medicine for my son's cold:Sambucol. It is an extract of elderberry that tastes good and is an immune booster. If this is an immune booster, however, I wonder if it would cause the same problems as echinacea (sp?) and make the tics worse???? She also suggested the Vit C supplementation and to push fluids, and to have him eat garlic and onions if he eats them...which of course he doesn't. Since we got the strep diagnosis I am doing the antibiotic, a probiotic and extra vitamin C. I don't want to leave anything to chance with the herbal remedy since the cold is actually getting better.