ilovedogs

Hmm, I really need to re-think the PANDAs thing or something along those lines, I guess. We have no TS anywhere on either side of our families so I didn't think the genetic component was there anyway but I didn't think that all TS was genetic either? He had strep once, after he started tics and nothing changed with his tics or OCD stuff. We don't have tics here in Phoenix and I've never found any on him when we visit back east. I try to keep our visits to cold season when the tics aren't as prevalent. Oh, and to answer the teeth question: yes, his teeth are a mess. When he bites, his top teeth are so far forward that his bottom most molars don't touch any tooth at all. They need to move his whole upper jaw back and move the bottom jaw forward to align the bite. I have a feeling he'll have his braces on for a while, too, because he doesn't wear his bands as much as he should, etc. I've been tempted to have him skip the braces but he was already having tics anyway so I guess I figured I'd just go for it.

No, Cheri, I've never really explored it. I just found a pediatrician who believes in PANDAs whom I might be able to see if I can get the testing covered by insurance. He did have a strep swab test last month and both were negative. Maybe I do need to go that route?

Hello everyone. I am looking for another starting point. My son, 14, has more severe tics than ever. We've been doing epsom salts baths or magnesium cream nightly as well as natural calm daily. I'm not seeing any positive change for him. He doesn't get any relief as the tics are non-stop all day long and involve his shoulder and head turning so his neck is killing him most days. I do massage on him nightly and he has a chiropractor(there are no NUCCA chirps nearby) and I also get him a weekly massage at our health club. Although those things feel good, they don't relieve the tics. His only 'true' allergies are seasonal allergies and all outdoor. He tested negative to dust, mold, dust mites, etc. I just am so lost and money is tight right now so I am having trouble wanting to find a new naturopath, etc. Years ago I put tons of money and energy into this and got nowhere so I gave up and we just dealt with the symptoms. At this point, I can see that he is starting to hit puberty pretty hard, too. I asked him to cut out soy and if he'd be willing to give up any foods and he said NO. UGH, what do you do with a teenager who complains about the discomfort from the tics but who won't make changes? And, what doesn't help is that I really can't guarantee to him that any changes we make will make a difference to his tics anyway so he doesn't want to make the effort. Any suggestions on where to go from here? What can I do that is small and minimal change wise or supplement wise that won't be too dramatic to him? Seriously, I can't remember being this frustrated by the tics. I honestly can't wait for the next 18 months to be up because he'll have his braces off hopefully and maybe we can rule that out, too. UGH!

My son is 14, he started tics the day he turned 9. It was like a biological switch was turned on for him. His tics are the worst they've ever been in the past 5 years. He got braces put on back in April and has had a few new tics since then including a low vocal breathing tic. He is late going through puberty and is just now showing signs of those 'boy' changes so I also attribute the higher tic increase to hormonal changes. Anyway, he thinks the braces are part of the reason he tics more, which could be likely so I'm hoping that once he's through with treatment that we'll see some improvements. Of course, he'll also be passing through puberty and maybe that will also create positive changes for him. We intend to do more testing on metal allergies and food sensitivities. I will say, however, that it's hard to get teenagers to change their diets. He says the tics just aren't bad enough to him to want to give up bread, milk, or sugar. I do make sure he doesn't eat HFCS and I try my best to keep him away from food dyes, MSG, and nitrates but at this age it gets harder. He spends more time at friend's houses, he is more independent in preparing his own meals, and he resists change in many ways, LOL! Anyway, I really don't have lengthy experience but I am looking forward to hearing other's comments and advice.

Yes, that is a good point. With the holiday excitement, our new puppy, and eating more sugar than usual too, I'm guessing it all leads to more tics. I just wish he'd be willing to do an elimination diet but the tics aren't bad enough to HIM. To me, they are hard to watch even after all these years. Mostly because he has about 4 going on at a time now and they aren't letting up in a waning period like they used to. There are so many possibilities: the braces, he's 14 so puberty is setting in, his diet, seasonal allergies, food sensitivities, etc and it all overwhelms me at this point. He's 14 and has been ticcing since he was 9. I guess I was hoping I'd have a handle on it by now and I'm just disappointed in myself for not keeping going. Unfortunately, all those tests and naturopaths, etc cost a lot of money so I stopped dealing with it all. I have had him skin tested for allergies and had some bloodwork back but the only true allergies that come up are seasonal allergies to trees, pollens, weeds, etc. No mold, dust mites, house dust, cat, dog, nothing. It appeared that all his allergies were based on outdoor triggers. As for foods, nothing has come up in any of the tests we've done. It's kind of infuriating because I'm guessing it's something else. We don't have tics where we live. We don't have much humidity so there's not much mold(there is some in houses with unknown leaks, etc, of course) but it's not a big problem here like it is in FL or WA states. And, quite frankly, I've been focused on his learning disabilities and other school related issues more so than the tics. Getting him tested educational problems, ADHD, etc have taken a lot of money and time. I guess I'm just burnt out and need some encouragement that some day it will get better. My marriage is also in trouble and that has been consuming my time and my thoughts and adding to my own stress factors. And, more than likely, my son knows there's trouble at home and that might be leading to some tics, too? Who knows? I'm just tired of watching the tics, I'm tired of massaging my son every night because his tics hurt his neck and shoulders so much. I know it could be so much worse, my son lost a friend a few weeks ago to leukemia. I know it's not a terminal illness, but I guess I'm just frustrated and getting discouraged. Thanks, Cheri, for all your support here. I honestly still don't know where to start. Should I get him tested for metal allergies to see if the braces are the problem? LOL, it's like a crazy puzzle and the pieces just keep getting turned back over and I can't figure out where they fit. I have started using nightly epsom salts baths for him as much as he's willing to do so, and I've started using kirkman's magnesium cream and I also use a few essential oils for massage like lavender and valerian. It's only been a few days so I'm hoping it will help. Oh, another question: he doesn't like the natural calm at all. I wanted to see about trying tablets. Is there a specific dose that is best to start off with? And, do I have to balance out the calcium with it? Thx, Bonnie

Which brand of magnesium have you found the most success with? He is really having trouble with a head turning tic and a head shaking tic right now and it's really causing him pain. I have a magnesium from Floradix that's a liquid but I'm not seeing any change at all. I don't think he has a problem with soy as he loves sushi and eats soy sauce on a regular basis. I'm just really getting frustrated because he'll complain about pain from the tics but he'll not work with me to make any dietary changes. I guess the tics aren't bad enough for him?

You know, I forgot to come back on here and respond to the idea of the lyme's test. We live in AZ and there are no tics here so lyme disease isn't really prevalent here. Anyway, what magnesium do most people use here? My son is older and can swallow capsules and pills and doesn't like the natural calm. I gave him a supplement called PS100 the past 2 days and now he's exploding with tics again. His naturopath wanted us to give it to him for his ADHD and for improving brain function but I'm wondering if it's triggered more tics? It's so hard to watch him tic right now, like 4-5 tics going at one time and barely a few seconds between episodes. Of course, I told ds that he's been eating too much sugar and that his diet probably needs to change and he tells me, "So what? The tics aren't that bad, mom." OK: so, he'd rather tic than eat right? UGH! Teenagers!

Hi Sean, we live in Phoenix too and I've heard good things about Dr Schneider. I have not gotten up the guts to pay what she asks to do all the testing, etc but I'm thinking about it soon. As for the tics, I've noticed that my son will tic in relation to what may be going on with his body at times. As Mar mentioned, her child tics more when she has a cold and it seems like the sniffling lasts longer. My son recently had a nasty cough and he started with a breathing tic that was relatively short lived. Unfortunately, his other tics are on the increase right now but that's another story. Anyway, I guess I just wanted to come on and say that you're not alone and just to remember that tics will wax and wane and sometimes we just don't know why.

My ds, 14, now presents with 4-5 tics at a time right now. He has had tics for 5 years and they have waxed and waned and really not been too problematic for him. He does not have vocal tics, only motor tics but they are giving him trouble these days. Of course, we have the onset of puberty, the new braces, his recent birthday and holiday season, and the fall allergies all working against us right now. So, I'm looking at starting over with him. He's been tested for environmental allergies and all his true allergies are to trees and weeds. No house dust, no food allergies(we've done both blood work and skin tests), dust mites, mold, etc. I want to have him tested for metal sensitivity and other sensitivities by a naturopath, but I don't even know where to start. We live in AZ and I found a pediatrician on our side of town who knows about PANDAs but doesn't really treat just tics naturally. I did think of getting him tested for the PANDAs at this point, though, too. He does the epsom salts baths and takes magnesium. It's not magnesium taurate, just a plain mag supplement. And, because he's 14 he's very difficult to work with on dietary changes. He says he doesn't care about the tics, he still wants to drink Sprite, UGH! It's driving me crazy, LOL! Oh, and heaven forbid if I ask him to give up Wendys. He's not as bad as some kids, we don't allow him to drink anything with caffeine except for green tea, I don't buy stuff with food dyes(he only gets that on special occasions or when his friends give him junk at their houses), the only soda I allow is Sprite or root beer or natural stuff like Hansen's brand and I don't buy it very often. I looked into the NUCCA chiropractors but there's no one within an hour drive of my house, but I may call them to see if they can refer me to someone who can adjust him gently because most of his tics are neck and shoulder tics these days. Also, I gave him a greens multi supplement one day just to see if he could swallow the pills and he developed an eye tic that day that was horrendous(according to him). The tic was gone by the next day so I'm wondering if there's something about those greens that caused him to tic or if it was just a coincidence. Other than the magnesium, what supplements help the best with tics? What about other vitamin supplements like D and greens for alkalizing the body? I do have Sheila's book but I find that I get overwhelmed and want to make too many changes at once. Also, my marriage is in a shambles right now and I think the stress in the home isn't help ds, either.

John, just wanted to throw something out there regarding the tonsil removal as an adult. I had mine removed at age 30 and the recovery was awful. If you have a demanding job, etc please make sure you communicate with them and take as much off as necessary. It was a 1 month recovery for me.

Well, the closest NUCCA chiro is about an hour away. You'd think for as big a city as Phoenix is that I'd be able to find someone closer. Funny, but today was his 14th birthday and he just started a few new facial tics that I've never seen before. I remember when he turned 9 and THAT DAY he started tics, it's been exactly 5 years and I don't feel any closer to a solution for him. Of course, it didn't help that he had 4 sugar cookies, 2 cupcakes, and a Hershey's bar today! UGH! He knows that sugar is a trigger for him, along with the birthday excitement, LOL! And, yes, I considered that the braces were triggering something. He has a terribly huge overbite and will have the braces for probably another 18-24 months. I am hoping that once they are off, and his jaw gets aligned properly that some of the tics will minimize. He seems very sensitive to the magnesium oil. What have you found is the best supplement for magnesium and should I give calcium with it? Also, ds is sensitive to zinc and I was wondering how important zinc was, too?

Hmm, I forgot about that Cheri. I'll have to see if we have someone around here. I've been using our massage therapist at the club and she does a relaxed form of deep muscle relief, kind of like Reikki, but it doesn't seem to help him. I noticed that these tics got worse when he started working with a personal trainer and she got him working on balancing the upper back muscles, strength training, chest stretching, etc. I also have taken him for regular chiro adjustments too. He did mention that his tics get worse when he eats sugar, go figure. I can't believe that he is so observant of his own body, though. It's so great to see him mature and learn about his body and what makes him tick(no pun intended), LOL. Other than his struggles with school work and ADHD stuff, he's really doing quite well. I also noticed that he's been ticcing more since the braces went on back in April, maybe that has something to do with it because the braces are re-aligning his jaw and face muscles.

Ds has had a shoulder tic on and off(mostly on) for the past 4 months. I can't seem to find any triggers but really haven't done any modifications either to his diet or otherwise. I took him for skin testing for allergies and the only allergies that showed were from trees, weeds, plants from outdoors. He has had food allergy testing and was skin tested for many foods, as well all coming up negative. He is going to be 14 next week!! He started tics the day he turned 9, almost like a biological switch was turned on. For the most part his tics are minimal and don't bother him too much but these shoulder tics have caused a great deal of discomfort in his neck and upper back. I've taken him for massages, have him do epsom salts baths, use magnesium oil on his back, massage him nightly, etc but nothing really provides relief. I'm sort of at a loss, and was hoping for some other suggestions. I haven't been on here in a while. I currently have joined an essential oil company and am experimenting with oils for him for his ADHD and tics. Hope everyone here is well! Thx Bonnie

My ds can't do citrus, either. For the natural calm, we used to serve it warm with some honey and he didn't balk at the taste. Honestly, I have a very compliant child though, so he would just suck it up and take it, LOL!

Hello everyone! I rarely post here, but started posting here over 4 years ago when my then 9 year old son exploded with tics. He is now 13 1/2 and still tics. I have never medicated him and usually I find that the tics wax and wane and don't seem to give him much discomfort. We are currently on vacation in FL and I noticed that he has developed 2 new facial and neck tics since we got here. I can't figure out what the trigger is, though, and it's driving me crazy, LOL! Usually I can attribute it to something but maybe it's just the vacation stress and excitement. He is here training for a tennis tournament that starts on Sunday so we've been here for 10 days already and he's progressively gotten worse. Nothing in the diet has changed as far as adding or taking away from anything he used to drink/eat. Maybe FL has some allergens that he's not used to? Anyway, just wanted to come on and say hello. MY son was also diagnosed with ADHD and we have seen a few docs who say he has a brain injury from birth and that his learning difficulties and tics may be as a result of his birth. Honestly, who really knows, right? Over these past 5 years since it all started I have come to realize that no matter how bad it seems, the tics do change as they continue to wax and wane. I get great comfort in just knowing that it's not forever. Once we get back from our travels(we are going to Dallas after we're done here for tennis again) I plan on working with some more diet restrictions, some allergy blood food testing, and working with some essential oils and supplements again to see if we can get the ADHD and tics under better control. As I said, the tics aren't 'awful', they're just tics but at 13 my son is not as open to diet restrictions as he used to be, LOL. He just says, "Aww, come on mom, just let me have the Powerade. Who cares if it has red dye." UGH!!! Yep, this is what happens and then you bend to them and see new tics and wonder why. DUH. I hope that some of the new folks on here will gain some hope that all will be well. Our journey isn't over, obviously, but I always feel more confident in dealing with his tics and issues as time moves on. It's never as bad as may think.

Cheri, I have not tried GABA directly with him. He was on Kavinace from Neuroscience for a year and half to help with his OCD and it really helped a lot. Apparently, the Kavinace crosses the blood/brain barrier better than GABA itself. Anyway, I do have some GABA calm I could give him. Could I give it to him before exercising, though. Turns out I think we're dealing with some social anxiety that was triggered by my dad's funeral and all the stuff that went along with it. He says that he gets nervous around other kids, afraid of being made fun of, or acting silly and having kids tell him to knock it off, etc. He gets so worked up about it that it's affecting his GI stuff because he won't eat properly and gets diarrhea, etc. I am hoping to schedule him with a local counselor who specializes in autism spectrum kids and with TS kids. She came recommended from some friends on our local TS message boards. I still have him scheduled to see the pediatric GI doc so hopefully he can get his GI stuff squared away, too. He's only 13 and his teen years are still all ahead of him!

Thank you for the information. I have both those books but haven't read them all the way through. Oh, and he has made mention that he likes to listen to music while doing math so I think you're on to something there. Well, I am not sure we're dealing with PANDAs or an infection. He may have food allergies or some other nutritional issue or, like you said, a deficiency in how he processes amino acids, etc. I've heaard of the AZ center for integrative medicine and I visit Tucson often but it's about 2.5 hours from me. I'm sure they have practitioners in Phoenix, I just haven't taken the time to research it yet.

Hi everyone, I am looking for advice. I have been on the TS side of this board for 4 years now and my son's tics are pretty much not an issue for him. They increase in stressful situations but for the most part, are not a problem for him. His big issues are his ADD, his anxiety, and stomach problems. One of the reasons that I have held off on exploring the PANDAs issues for him is because his GI issues are so bad that even 1 day of antibiotics can send him to the toilet with painful diarrhea. He's only been on ABX twice in his life and then we tried a 3rd time a few months ago for a possible sinus infection but he was more miserable from the 1 pill than he was from the cold he had that we just stopped the ABX and the sinus stuff cleared up on it's own anyway. How do they treat PANDAs in kids with major GI issues? I already give digestive enzymes and probiotics. Also,does anyone know of good doctors in the Phoenix area? I have a few naturopaths that we've seen but they are not very versed in PANDAs. I know we have a few good DAN doctors but I don't know of any good integrative MDs. Thanks, Bonnie

My ds' tics are minor compared to his anxiety and GI issues. And, when he gets a GI issue going he gets 'anxious' that he will have to throw up or something. Anyway, I am taking him to a pediatric gastroenterologist to get him tested for celiac and for fructose malabsorption and then I'm taking him to the allergist to test for environmental allergies. Once we know what we're dealing with, I can go the natural route and see our naturopath and try to find a diet and plan to help his GI problems. In the meantime, he has been very anxious since my dad died 3 weeks ago. He didn't handle the funeral and viewings very well as it was his first time doing all of this and I was uncertain how he would do. It definitely spiked his anxiety issues, which, in turn spike his GI problems. It's like he gets caught in a vicious circle. I am also hoping to find a good DAN doctor here in AZ if our naturopath isn't very helpful but I was wondering if any of you have any other input? I use essential oils and calming teas for him along with magnesium but when he's really amped up and on edge I haven't quite found the right combination of ingredients. I'm sure that as he progresses through the teen years, his anxiety will change and grow and I'm concerned about depression, etc. My dh's family are a bunch of depressed, anxious people and my dh feels that his genetic pool has done ds no favors, LOL.

We only tested for strep at the time I brought it up to the MD and he was negative(we did both tests on him at least 3 times over the past few years). Actually, he's only had strep once in his life and the antibiotics didn't have an effect on his tics at all. Since dh's family has a history of OCD, LD's, and anxiety I just figured we're going down the same path with ds. The tics are just an added bonus, I guess. Am I missing something else to look for with him? And, even if it is PANDA's I don't think I'd treat him with a bunch of meds anyway because we're doing pretty good just handling things naturally and with good doctor support, etc. If he ever took a drastic turn in the other direction, I guess I could get further testing done on him beyond the allergy issues, etc.

So, I thought I'd ask about this here. My ds is an only child, he has lots of friends because he's involved in competitive sports and homeschool groups, etc but he does spend a lot of time alone and with us. I also talk to myself but I keep my voice low and whisper. I have had episodes where I talk to myself and people catch me doing it in stores, etc and then I'm totally aware of it but really wasn't aware I was doing it at the time. Once ds was born, I used to talk to him incessantly even when he was a baby. I'd tell him everything on my mind. Anyway, my husband is concerned and thinks it's weird but I think ds is just like me and that he'll have to learn how to curb the talking when he's in public or around other people, etc. Also, a quick update on us for those of you who remember us. Ds is now 13 and still has tics but they aren't too bad most of the time. His real problem is anxiety and stress related issues like stomach problems from anxiety, etc. I am planning on really focusing this year on treating his allergies and nasal congestion. I want to possibly go wheat free for a while and see if he improves with that. He has a lot of food sensitivities but he fights me on taking supplements so I feel I have to take baby steps with him. He also hates swallowing pills. I thought the allergies would get better once we moved(we moved into a single story home with 100% hard wood flooring) and that his allergies would get better but they haven't. He's had 3 colds since August and they all have heavy nasal congestion so I'm planning on some environmental allergy testing and we'll see what we find out. Anyway, I hope you all have a wonderful holiday season and a Happy New Year!! Bonnie

Hi guys, my ds has tics and OCD but is now battling a sinus infection and cough. The doc first put him on azithromycin(z-pac) and he got diarrhea within 2 hours of taking it. Really bad intestinal cramping and pain, too. So, we took him off antibiotics to see if his body would fight it off naturally and to see if maybe he improves today or tomorrow. Is there any other antibiotic out there that has a lesser effect on the intestinal tract yet still fight infections just as well? Just in case we need to put him back on them, I'd like it to be less traumatic for him. Thanks! B

My ds hardly ever complains about his tics. Sometimes he mentions that his shoulder is sore from his shoulder tic and sometimes he complains a bit at the end of the day, but it's never gotten to the point where he's really hurting. Lately, he's had an eye tic where he rolls his eyes to the upper left hand corner. He says he feels like he's straining his eyeballs and it really hurts his eyes and is making him miserable. Thankfully, we homeschool and I can cut back on his reading a bit for now but I was wondering what I can do to relieve them? He will do epsom salts baths every few days or so but I am looking for something that will give immediate relief. Anyone dealt with this tic and can offer some advice? Thx! And, while I'm asking: what about his shoulder tic? I've thought of making a magnesium cream for him and rubbing it on but he gets frustrated if something doesn't give immediate relief. Hence, the reason he'll only do epsom salts baths a few times a week, every day would be asking too much of him, LOL!

Hi Lynn! Haven't been on here much either. Sorry you guys are having waxing periods, so are we. I know that my ds always gets worse at this time of year. Maybe it's the moon, maybe it's the changing sunlight hours, maybe it's the allergens....never really sure. All I know is that I have changed nothing in his supplements or foods and he'll just start waxing, seemingly for no discernable reason. Hang in there, you're not alone!

Hey Guy, I noticed that many of your posts go unanswered and I'm not sure why but wanted to respond here. My cousin has tics due to a brain injury she sustained in a car accident. She has found that biofeedback and meditation help relax her neuro system but not enough to get rid of the tics themselves. I have thought that guided meditation would help my son as would EFT(emotional freedom technique AKA tapping) but he's just not patient enough to do it nor is he bothered by his tics enough. Some day I'm hoping to try these things with him. She also said that Heart Math program helped relax her, as well. You can find info on Heart Math on Amazon. Hope this helps.