ilovedogs

" Ditto on everything she said. Well, not everything but in general anyway. We've run the gamut of trial and error only to find that we do OK on just minimal supplements. If we want to be perfect and have NO tics at all, then I'd really have to get serious and cut stuff out. My AHA moment came when ds ticced like crazy in a hotel room that smelled musty and moldy. He exploded with weird tics and we haven't seen them since this trip so I finally said: It's allergy related! Elevated histamines really trigger his tics but I have seen no change while he was on allergy meds so again, I was left wondering, LOL! Hey, at least they keep life interesting. What would we do without this stuff to consume all our free time? I mean, who really has time for the beach right? HAHA! Just kidding. As for chlorine: we have a pool and we've been to quite a few waterparks this summer and I've personally seen no correlation between tics and the chlorine. Yet, many folks see a totally direct relationship between chlorine and tics and that's why this is such an individual thing. God did not create all their little brains to have the exact chemical makeup or neuro sensitivities so what may work for one, may NOT work for another. Talk about frustating to say the least. The best we can do is be the best moms we can be and be an advocate for our children. B

Thanks guys. I'll start by adding back in the magnesium and then being a bit more diligent on the diet. I'd love to get some Omega's in him but he burps up even the flaxseed oil and cooked salmon. Actually, so do I so I'm wondering if we have an issue with those oils in general? Anyway, we're in this for the long haul and some days I just can't see the light at the end of the tunnel. B

OK: so we've been at this for almost 3 years and still I feel like I know absolutely nothing, LOL! Anyway, ds is increasing in tics again but they are more complex tics like pulling his shirt and a vocal where he clears his throat. His eye blinking is almost non-existent, too, but he also smells his fingers if he eats anything with his hands like pizza, sandwiches, etc. He has so many weird habits/movements/tics(whatever you want to call them) but they aren't very noticeable to most people unless you stare at him. The most noticeable is his finger sniffing. I have been very lax in giving the supplements but I'd like to start again and see how it goes. What I wonder most about is how many of tics seem more like habits. Like things he does only in certain situations. He clears his throat more after having eaten a meal and then I don't hear it as much. He only sniffs his fingers while eating. He only pulls his shirt when he's in movement like playing tennis or walking through a store. So, I guess what I'm wondering is: would magnesium and B vitamins help with something that seems more like a habit or a tic that occurs situationally? I'm so used to the eye blinking, hair tossing, jaw stretching, etc that I truly see he does/did ALL the time, that I'm having a hard time figuring out where to start with these situational movements. Any suggestions? Our doc has not been very helpful and I'm thinking of finding a new DAN, but the tics really aren't interfering in his life so I don't want to go overboard and get him all worked up over nothing. I feel like for 2.5 years I kept messing with him, trying new supplements, changing his diet, etc that he's just burned out if all. I'm sure if it was hindering his life or his performance in tennis, he might be more willing to work with me but he's almost 12 now and he resists changes and supplements even more since he doesn't see a problem with his 'issues'. Sigh, this is one long road! Bonnie

Caring mom, thanks for the recommendation for that cream! We have a compounding pharmacy down the road and I think I'll ask him for some of that(or do you need a prescription?). I have to say that we did NEAT(a bit different from NAET, but still a type of muscle testing) with an alternative med doctor, too. I didn't see any improvement in tics or in his allergy response. Ds' allergies have been getting worse this year and I know most of his allergies are environmental so I'm thinking of doing an actual allergists testing and see what comes up. I'm assuming dust mites, pet dander, and tree/pollen allergies. I've tried to change his diet so many times that I never see a change in his tics. I've been letting him eat all kinds of crud all summer long and I still don't see a true increase in tics, they just change. So, instead of him sniffing his tennis racquet while on court, he pulls on his shirt now with his right hand. Or, instead of blinking his eyes while watching TV, he now does a mild eyebrow raise. Anyway, I would like to find an integrative medical doctor but I have yet to find one here in AZ that is reputable or recommended. With my luck, I'll finally find one and they won't take my insurance, LOL! Bonnie

Lynn, you may already be gone but I was going to say that I'd think that if he's doing it in his sleep that it might be a virus. A friend of mine's son had just a cough for 2 weeks and they finally took him to the doctor and it turned out to be bronchitis. He didn't have any other symptoms and felt fine most of the day, too. Maybe bring some eucalyptus oil with you and some honey to soothe his throat and if it gets worse,check with his doc. I totally understand the watching for new tics thing. Ds always is keeping on my toes, LOL!

HI Faith, I'm sorry that things are waxing for you. We all know how frustrating that is. I can only speak about a cortisone shot from my own experience. I got it to possibly help with heel pain from a nerve problem I've been having. I got the shot back in May and I'm still having problems with my skin from it. Somehow the cortisone thinned my skin at the injection site and started a mass eczema reaction. I had pain where it felt like my skin was on fire, peeling and bleeding skin, and it just kept spreading. I had to go to a dermatologist and see a new podiatrist because the first one denied that I could possibly have a reaction that bad from just 1 injection. Basically, I'd say that everyone reacts differently and some folks have had more systemic reactions, too. If it were me, I'd not do it again and I'd probably only allow it on my child if it was a last resort and if I was guaranteed improvement. It's just not worth the risk. Also, the shot itself can be quite painful and you risk infection at the injection site, too. Have you thought about giving him a break from all 'treatment' plans? Going back to just a clean diet, starting back with just magnesium, adding in one supplement at a time, etc may jump start healing again??? Honestly, I don't have any answers. We've been having things pretty good since last fall but ds still tics. I've let him eat all kinds of junk and he still doesn't increase tics so I'm guessing we're dealing with more of a food allergy or an environmental thing. It could be yeast for us, too, but that's a BIG one to try to treat so I'm holding off since things are going relatively well for now. Bonnie

Thank you for the replies. We have not been diagnosed with PANDAs though. Ds did have a Titer test done for strep about 1 1/2 years ago, 6 months after his tics started. I forget the results right now but he did not have any traceable strep infection in his body. He only wets at night and it's not every night. He has no other symptoms of anything right now. The anxiety has been gone since last November, the tics are minimal, his ADD is much better, and we've stopped all supplements. My dh was extremely ADHD as a child and had some LD's like dyslexia. He did not have anxiety issues or tics. My father in law has OCD, though, but not my husband. I might just go to the pediatrician and see if they can help at least rule some things out. I'm tempted to try a bedwetting alarm but I just don't know if they are effective.

Does anyone here have kids with trouble with bedwetting. We have trouble with our ds off and on. He had a really bad exacerbation of OCD symptoms and early waking and bedwetting last fall but now all the problems are gone except for occasional bedwetting. He's almost 12 and it's starting to bother him more now. Some nights he'll just wet his underwear a bit and the bed won't have a spot or smell or anything. Then he may go a few days with no problem and then he'll have a few days of issues, etc. According to my mother in law, my dh also had issues with bedwetting but she never told me how old dh was when it subsided and dh isn't much help. Should I have him checked for a medical condition? Has anyone tried the bedwetting alarms? I'd really like to help him get over this but I know that sometimes things just take time! LOL! Thanks, Bonnie

We've never seen a reaction to his Ipod, not even watching a TV show or playing an app game seems to bother ds. But, if your ds was wearing headphones, maybe he was reacting to the sensory feeling of having those on? My ds has sensory issues and sometimes those trigger tics or trigger habits that resemble tics. Maybe try a different type of headphone or have him listen to the music off of the computer for a bit and see if the tics change or dissipate.

Thanks ladies. I bought the All Terrain bug spray and I'll be using OFF family care wipes when we do the Everglades(on myself, not ds). I swell up like a tomato is growing on me when I get bit, LOL! I read about the B1 but most articles say it has to build up in the body and since we leave tomorrow, I'm not sure it will help but we'll start supplementing with it just in case. We will be mostly staying within a mile of the beaches so I don't think the bugs are as bad there since it's breezier. My grandparents are in Boynton Beach and ds will be playing at a tennis training program in Delray Beach. As for the humidity: it was 110 degrees here in Phoenix yesterday and the dewpoint was in the 50's. And, next week it's supposed to be 113 for quite a few days. Ds goes out and plays in all this weather so I'm thinking he'll adapt fine to the FL weather. I'm the one who's going to wilt! Luckily, I'll be indoors for most of the week!

We will be traveling to Florida next week and my grandmother wants us to do an Everglades visit. Not something I'm looking forward to since I'm a complete meal for a family of mosquitos. Throw ds in and they'll have dessert, too! Anyway, ds got bit twice in the past 24 hours and he's swollen up to the size of a small plum. We've been treating the itching with tea tree oil, calendula cream, and icing. I'm hoping a dose of benadryl at bedtime and some rest will relieve the swelling by tomorrow. He's never swollen up this much before so now I'm wondering what to use to prevent the bites while in FL. I would really like to stay away from DEET but many natural products get mixed reviews. Any suggestions? Thanks, Bonnie

That's wonderful!!! So glad to hear it went well. We'll be in your neck of the woods in September again so we hope to see you guys soon! Bonnie

Patty, how is it going with the braces? I always forget how old your son is, too! As for cleaning the teeth without fluoride: check out The Natural Dentist line of products, they carry both fluoridated and non-fluoridated products and we love the taste. I use an oral rinse that's for gum health and ds loves it if he bites his cheek and creates a sore. It's called Healthy Gums from the Natural Dentist line. Iherb has good prices on this stuff. I also believe there are some rinses that have tea tree oil, grapefruit seed extract, and other essential oils.

Hugs to you, Lynn! We've been there, done that. Ds always tics more when we travel, probably just the excitement. But, I also noticed that old hotel rooms and new allergens can trigger an exacerbation, too. Just remember that it all will pass and he will wane soon. Please do try to enjoy your vacation. Praying he wanes soon for you! Bonnie

Patty, it's not that kind of spacer. He had a permanent space maintainer made for him. He had them on the top and bottom and they were attached to all 4 of his molars and had wires that ran to the other side. On the top, the wire ran along the roof of the mouth and had a rubber piece that pressed up against the roof of his mouth and on the bottom the wire ran behind the teeth so you couldn't see it. The spacers were there because he had so much movement in his mouth and spaces from having lost teeth due to early root canal treatments. So, basically he had braces that didn't MOVE his teeth, they were there to just keep the spaces open for the new teeth that would be erupting. He had them taken off yesterday since all his adult teeth are in, except for 3 of his 12 year molars. We had the bottom one taken off last year and finally got the top one taken off yesterday. I have always wondered if it was that rubber piece that pressed up against the roof of his mouth that might have exacerbated the tics? I almost hope I see him do the eye tics this weekend because I really don't want one more thing to deter us from starting braces. Bonnie

Just wanted to post this while I'm witnessing it myself. Ds had his spacer taken off today after 3 years of having it in his mouth. I haven't seen one eye blink or eye wink or eyebrow raise. NOTHING! I keep thinking maybe it's a coincidence but I'll know more as I go through this weekend. We're traveling for a tennis tournament tomorrow and he tends to tic more during tournaments due to the stress and excitement. If he doesn't have any facial tics, then this will make it extra hard on me to decide whether to put him in braces or when I decide to do the braces. It's like I'll have to accept that we have to take the good with the bad, right? Bonnie

Hi Patty, did you get the braces on yet? I thought of you today because my ds got his space maintainer taken out today and we were chastised for not having him in braces yet. I will be doing some research over the summer and I am going to try to find the best ortho for kids with special needs. You see, it's not just the tics that I'm concerned about, I'm worried about ds' anxiety issues as he has a HUGE fear of dentists and any mouth stuff, KWIM? I hope things are going well for you guys! Bonnie

We use the Natural Calm plus. Haven't seen it affect his tics at all but I still think we lack magnesium these days so I continue giving it to ds when we're home. When we travel I just give chewable calcium/magnesium supplements. Also, I have found that Dead Sea Salts work better at reducing tics than the epsom salts for us. It's unfortunate that they are soooooo expensive. I only bought the dead sea salts for myself but ds wanted to try them. And, of course, it worked like a charm(didn't eliminate tics completely but I felt it did a better job in minimizing tics and the sniffling tic he had going has greatly diminished) for him so now I'm wondering why they work so much better than epsom salts alone. Actually, when I gave him the second bath with the dead sea salts, I mixed in some epsom salts, too. I did 1/4 cup of dead sea salts and then 1 whole cup of epsom salts. Hopefully, that will continue to be helpful for us!

OH, good idea! I buy Castille soap from Trader Joe's and use it for everything! Thanks!

Not sure about gluten free. Yes, they were cheaper. I paid around $3.00 for a package of 8.

Hey guys, I found some new nitrate/nitrite free that Oscar Meyer carries now. They are called Oscar Meyer select and they are made with angus beef. Just thought I'd share since many of us are BBQ'ing this summer and having family picnics. I really like them and find them to be better tasting than the Applegate Farms.

Thanks, Chemar. I have that list but I guess I always thought that tics just happened all the time but not just during certain circumstances. Ds won't sniff his fingers if he's doing anything else or if he's eating with utensils, only when he eats food with his fingers. He pulls at his clothing while he's in between points on the tennis court but doesn't do it with his clothes at any other time. That's why I'm confused. His eye blinking happens all day no matter what's going on or where he may be. I find the other things to be situational. So, what supplements are the best for something like this that seems to cross the line, so to speak? B12(methylcobalamin)? Taurine? I already give magnesium and will be trying to do some omegas(no fish oils) soon.

Hey guys, just wondering if you all could provide some insight. Ds has been sniffing like crazy for the past 2 months or so right when allergies got out of control for us. He keeps telling me it's his allergies and I'm not really good about medicating the allergies and quercetin and other natural products haven't worked for us. His allergies include red watery eyes when he's bee outside for a while and the sniffling. Many of the repetitive things that ds does are more like habits. He has tics but there are things that he does that I can only describe as habits because he only does them in certain situations and he can stop doing them if I ask. So, I've asked him to stop the sniffling and he'll say "oh, yeah, sorry" and then I won't hear it for a few minutes. When he starts up again I asked him if he feels he 'has' to do it or if he just does it more out of habit. He says he just feels snotty and feels like he has to do it. I guess I'm wondering how to treat this or if I should just not bother. I don't want to start giving him amino acids or extra B vitamins if it's truly just an OCD type habit from the allergies yet I don't want to give him allergy meds if it's more of a tic. Any suggestions? Also, he's always been a sniffer. He sniffs his fingers when he eats finger food, he sniffs his forearms after taking a shower, etc. Again, it's all part of his habits that make him who he is, LOL! Honestly, what is the best treatment for someone who just has repetitive habits? Biofeedback? I know we all have bad habits but he has soooo many! Thanks! Bonnie

You are so sweet! He's doing well with tennis, thanks for asking. Just got back from a big national tournament in Palm Springs, CA. Grif had 2 wins which moved him up in the Southwest rankings to number 19. He's trying to qualify for an event called Pacific Zonals which occurs in late July in Tucson, AZ, so he's working hard at keeping his cool and playing his best. You know, it's weird; we're not doing any supplements for the tics or anxiety now and he's doing fine. I mean, he still tics and has a few weird habits/OCD type stuff he does but his anxiety and the intensity of the tics have far decreased. I'm not even being strict about diet since we don't have a poor diet anyway. I still allow some Sprite, some nitrated meats, and even HFCS when he needs a Powerade if I don't have any other electrolyte supplement around. One of his good friends from tennis also has tics. Hair tossing, eye blinking, and a mouth tic that Grif noticed one day. And, I saw another top player who had an eye blinking tic recently. Tics seem very common and I just try to lighten up these days. We've had so much going on. My dad is still in a PT rehab facility (he had the surgery 5 months ago and is still paralyzed from the waist down partially) recovering from a spinal tumor surgery, John's dad is 87 and just fell down the stairs and was in the hospital(for the 2nd time in a few months), we just put our 14 year old lab down last week, and the list goes on and on.....Anyway, with all this going on, I truly don't have time to mess around with supplements. I spend my days on the phone with family and I was spending a lot of time tending to the dog for the past few months before we put her down. And, through all of this Grif has come through with flying colors. At one point my dad and dh's dad were in the hospital in life threatening situations at the same time!!! It's been crazy! Hope all is well with everyone at your place. We'll be out in September again so hopefully we can get together again! B

Hi Patty, I have the same concerns that you have about the braces. Right now ds has a permanent steel space maintainer in and I truly think the tics started right after he got that thing put in. I just never made the connection. But, the tics have waxed and waned like everyone else's anyway. Ds has a huge overbite and his eye teeth are coming in looking like Dracula's fangs, LOL! So far, he's not complaining but I think he's going to want braces when he gets interested in girls. So, I'm thinking of waiting until he's 14 or so, see how the teeth look once his mouth grows some more, and then probably get them put on. My main reason for waiting is that ds has a horrible dentist/ortho phobia because of his gag reflex, etc. He throws up at almost every dental appointment whenever something touches his tongue. Anyway, I hate dealing with mouth stuff with him because he's so difficult. He's very afraid of getting a filling done or having any work done in his mouth and I feel he has the best pediatric dentist around. It sounds like you have medical reasons for putting him in braces so it sounds like that's your best alternative. Good luck, prayers today for you guys from me!