ilovedogs

Hey Football guy, Nice to meet another Arizonan. There are 2 of us here on the mesage boards but we're here for our boys. My son is 9 and started ticcing about 9 months ago. The other mom here has referred us to a naturopath in Sun City named Kenneth Proefrock. You can look him up online. She said he's VERY knowledgeable about the neurotransmitters and sulfation system of the body, etc . They have her son on a good regime that's helping quite a bit and I'm planning on getting my son over to him soon. My son also has ADD and OCD-type anxiety so I think some of his tics are tied into the anxiety. BTW: this naturopath is pretty costly but she said his knowledge is worth it, and he also has a few Tourette patients. I really can't help on suggestions for you, quite frankly. It sounds like you've gotten a handle on what might help you, etc. The other thing I'd suggest is trying yoga since you're a pretty active guy. Yoga will increase your strength and flexibility but you'll learn some valuable relaxation techniques. I teach yoga for Pure Fitness and I have lots of young guys come into class, you wouldn't be the only one! Actually, I had a bunch of high school guys come into my class a few years ago and they were sweating up a storm and panting through the class, so don't think that yoga is for the unfit! I think you'd really benefit from the relaxation techniques the most, though. Good luck, Bonnie

Hello, I just wanted to welcome you to the boards. My 9 year old started ticcing about 9 months ago and I still haven't found the cause, or the contributing factors. One thing I learned from coming to the boards here is that what works for one child may not work for another. If you do lots of searching you'll see many people refer to Bonnie Grimaldi's vitamin plan for Tourette Syndrome to be very helpful. Basically, B vitamins, Omegas, a good multi vitamin, and magnesium are considered helpful. If you go to www.bonniegr.com you will find the supplements and some helpful tips from her about nutrition, etc. When it comes to doctors, I have found (as have most folks on this board) that conventional medicine is not always going to help you. Many times you'll get a prescription and a ,"It's just a tic disorder and will probably clear up soon". I would say a DAN doctor, naturopath, or environmental dr of some kind would be your best first choice. There is a mom on here who's in the Chicago area(can't remember who, though) who might be able to give you a recommendation. I live in AZ and have found there are a few good alternative doctors who work with neurotransmitters and balancing them with nutrition and supplelements: I just haven't gotten around to seeing them. We have a good naturopath right now but I don't think she understands neurotransmitters as well as the others but she's been very helpful in allergy treatments, etc. The number one thing I know folks will tell you to do here is to cut out the junk: no high fructose corn syrup, food colorings, MSG, food additives, aspartame, etc. Also, checking for environmental allergies like chemical sensitivites, etc. can be helpful. Keep a log of what your child eats, where he's been that day and if the tics increase or decrease depending on what's going on in your lives. This will give you a clue as to what triggers the tics. It could be food, allergens, stress, etc. have a great day! Bonnie

Well, I know I have MCS (not my ticcing son but I don't rule it out). I get stomach pains and I have breathing trouble like asthma symptoms when I get around chemicals especially chlorine. It doesn't make me angry or moody. I definitely wouldn't rule out the chemicals in the new tics you're seeing though. I still haven't figured out why my son tics and what helps minimize them. After camp is over I hope you'll see an improvement and that will be your clue that it was the chemicals.

You're in VA??? Too funny! My mom is in VA and I went to school in Baltimore. I met my dh there, though, and we moved out to AZ 13 years ago. Carolyn N lives close to me and we get together every so often. It's nice to know at least one person who's dealing with what we're dealing with here. PS: my mom is in Loudoun County in Purcellville. Bonnie

there's nothing you can do to make teeth come in faster. I'm right there with ya on this one. If he's in pain you can try oral gel based pain relievers but I think this is just something that takes time. Hopefully, the braces encourage the movement of the teeth by making the space he needs. Is it just that his tics are really bad or is it the teeth hurting that are bothering him? I know Cheri said that B5 helped with mouth tics and I forget what she said helped with vocals but I know there's things out there that have helped others. What about craniosacral massage or acupuncture for him? Have you tried those before? I know I'd try them if it got bad enough! I'm sorry you're having a tough time as I sometimes wonder when it will be my turn to see all these other tics and vocals that I've heard mentioned of here. Big hug to you! I wish we all lived near eachother, we could have a great support group going !

I'd love to know that answer, too, b/c my ds is going to have the same problem with his teeth. Right now he's got a loose tooth and I noticed an increase in a neck/jaw tic since he told me the tooth is loose. But, he also has these steel space maintainers in, both top and bottom and his tics started 6 months after he got them put on. They basically have bands that go around the back teeth and have arch wires that connect along the roof of his mouth to the other side with a rubber(I think it's rubber) piece to protect the roof of his mouth. And, the one on the bottom just has a wire that runs behind his teeth from one molar to the other. I'm sorry you guys are having a tough waxing period right now! What does your dh say about all of it? Were his tics this severe when he was a child? I'm having a hard time, too, with ds's new neck tic as his whole neck seems to seize and jerks his head and jaw. Of course, it doesn't seem to bother him so why do I care so much??? ((((CP)))), God will see you through girl!

I'm not sure about the dopamine but my son's tics wax and wane through the day. Many days I don't even see him tic until after lunchtime. Other days he starts ticcing while he eats breakfast and then it's on and off all day increasing as the day moves on. Can you recreate the feeling as you go through the day with some relaxation breathing? You may be able to get some relief if you train your body to relax. B

I'm sorry that I can't be of any help on the diet thing. I personally can't find triggers for my ds and I've allowed HFCS and even some food dyes every so often to see if I see an increase in tics and I see no change. Nothing either good or bad. But I wanted to add that I, too, get angry at my son for his tics sometimes. Like I want him to be able to control them b/c I can't look at them anymore. Some of them really distort his face in a weird way and I just start thinking: I can't watch this anymore!!!! And, then I get mad at myself b/c I know it's wrong, etc. You get the picture! So, just wanted to let you know you're not alone. Praying you get some answers at the allergists office and that it will give you a starting point for diet changes, etc. Bonnie

Can someone explain the role of zinc and B6 in pyroluria. I'm thinking of getting ds tested for this(and probably dh, too). I read that if you have pyroluria that you shouldn't have copper. Is that true? How do you avoid an element like copper anyway? Also, I have heard of some kids getting over 50 mg of B6. Is that safe? How much does your child get? I currently give ds 10 mg of B6 a day(it is in his neuroscience supplement combined with some other aminos) but couldn't find supplements that were small doses. Most of them were 50 or 100 mg of B6, I'm concerned about giving him too much B6. Bonnie's vitamins have 50 mg so I'd be giving him a total of 60 mg if I started him on Bonnie's and gave him the recommended dosage for his weight. Thanks, Bonnie

I have the Bio GS. I got it at Frys Electronics for about $300. That's about the same price that I saw it online for. Even though it's in ds's room, I think the whole upstairs gets a benefit from it b/c my allergies have been better too. We keep the bedroom doors open so it covers a pretty big area. I can't remember what other models they carry, though, if you need somthing smaller.

We have seen great results this summer with a HEPA filter in ds's room. I haven't seen any of his allergy problems that he's had in the past(sniffling, nasal congestion, etc where I was giving him meds at night just so he could sleep). We bought a Rabbit Air HEPA that also has an ionizer but you can turn that feature off and just use the HEPA. It's a 3 stage filter and needs to be vacuumed regularly and cleaned out, as well. Can't say enough good about it! We also are doing NEAT this summer. I really haven't noticed a difference since the filter had already been doing it's job. We have our final appointment for it in a few weeks and then I'll be able to post about how I felt it went. NEAT is similar to NAET but I'm not versed in either of them well enough to explain the difference!

Yeah, me too. Of course, now he's still doing it since dinner. Most of the time I see the increase at meals and then just periodically through the day. I just wish I could get this supplement routine to work for him. I'm still in trial and error mode and I sometimes feel like I'm making it worse!

My ds had started a new tic involving his neck/jaw area. Can't really explain it, quite frankly, but I see it more intense while he's eating or drinking. I just thought it was something to muse about. This whole tic thing fascinates me and frustrates me at the same time! Also, he has a loose tooth and I noticed this tic start about the same time he mentioned the tooth. Unfortunately, this tooth isn't anywhere near ready to be pulled out yet! Bonnie

What happened? Anyone know? Not sure but I'm glad they're back up!

Chemar, I have been hyperfocusing on researching all of this. I found this article to be enlightening, yet scary! I see the rate of increased Alzheimer's and wonder where our future generations will be if this keeps up. The toxicity of our world combined with genetics and other factors is leading me to be concerned for the health of 'immunized' nations! So many pieces of the puzzle...yep, that's about right! Our naturopath was fascinated when ds tested sensitive to all the vaccinations he had received. I wasn't surprised at all. I just wish I had known back then what I know now! She was also confused when I told her that 5-HTP made ds more anxious and OCD-like and that the theanine made him tic more. It just goes to show that we are all individual when it comes to our genetic makeup and our balance of brain chemicals. Making it even harder for us to fit those puzzle pieces together. B

Hey Pudgeo, My ds had some very bad OCD for a while but I started him on a supplement that really helped ALOT! Our naturopath works with NeuroScience and they have a product called Kavinace, it has done wonders for us. Here's the website, www.neurorelief.com, and you should be able to find a list of doctors who distribute their products. I have not seen a reduction in tics, though, but the OCD was soooooooooo bad so I'm just happy that he has relief from it for now. On the PANDAs front here on this thread: I have read that you may have to try MANY different types of antibiotics to help the body heal. Unfortunately, the money spent can really add up. My ds has not been diagnosed with PANDAs but I'm considering getting his strep titers checked just in case b/c he started the OCD stuff after a strep infection this winter while the tics had started a few months prior. Bonnie

Well, last week we did environmental allergens and hardly anything came up(he did react to the vacuum bag from home that we brought in). Remember that NEAT is like NAET where you don't do any bloodwork, it's all about the energy system of the body and accupressure. I did notice after we did last week's desensitization that he was sneezing the whole day afterwards but it went away and he's not even waking up with a stuffy nose like he usually does. So far today, he's ticcing just like usual. He has the same tics on and off most days: eye blinking, some nose wrinkling, and a jaw tic. Funny thing was: we didn't see any tics at all today until he was wearing that vial at the naturopath's office and then I saw the tics start creeping back in! This is why I'm hoping that we find some food allergies next week. I really was just flabbergasted that the only 'chemicals' he tested positive for were all his vaccinations! NO food colorings, no additives, no chlorine, nothing. B

I'm sorry! This is one of the reasons why we haven't gone the neurologist route yet. My ped/gp wasn't too helpful either and just wanted to take a wait and see approach. I'm putting my ds through NEAT allergy treatment which is similar to NAET or BioSet. You can do some research here on this site to find out more about them. Next week we're doing foods so I'm really hoping to get some answers. Anyway, big cyberhug out to you! Sorry it didn't go well! Bonnie

Ds went for his second NEAT treatment(natural elimination of allergies treatment) and today was chemicals day. We tested pool water, tap water, all the hygiene products and cleaning products, etc. She tested for every chemical known to man it seemed. The only thing that came up on his sensitivities/allergies was VACCINATIONS! The naturo was in disbelief and said that she's never had ANYONE test for so many vaccionations like this. I had ds fully vaccinated in his younger years as I didn't know much about them and thought that dr's knew everything(HAHA). Anyway, she put him through the therapy to desensitize him and warned me against further vaccinations. I was like,"yeah, ya think?" He also didn't have very many allergens come up last week and next week will be foods so hopefully we'll find some triggers there, too! Bonnie

This is good to know! I keep thinking of putting ds on GABA b/c he's ticcing at a high frequency after I gave him Theanine the other day. This particular tic just won't go away yet and I'm hoping the naturo gives me the OK to give him the GABA. Chemar mentioned that Theanine is dopaminergenic so that might explain the tic trigger and I was hoping that GABA wouldn't do the same!

I had to laugh! About the yoga thing, as I am a yoga instructor!!! I just can't get my son to want to take my classes! My dh loves it, though, and I do use my yoga breathing techniques with ds which he does enjoy. On the golf thing: it was about 97 degrees(normal for us here in AZ) and they walked the course. Dh said he did great on the first 9 holes and then ds just lost it. I told dh that it was because we let him have a donut for breakfast and he was probably coming off the sugar high! Anyway, they've both recovered and are getting along fine now! Bonnie

My son and dh went to play some golf this AM and dh came home in a foul mood. Apparently ds did great on the first 9 holes but he just lost his attention span, etc. on the last 9 holes. He said he had to keep repeating himself and reminding ds to pick up his bag or get the right club, etc. Since we homeschool, I am very aware of the attention issues. Ds is right there with me one minute and then the next he's staring at the fly on the wall. What supplements can I give safely to help ADD w/out increading tics? Fish oil makes him tic more, btw. Also, are there any exercises we can do to help him become more aware of what's going around him? When dh freaks out on ds, ds tics more so I have that to contend with today, too! I just don't know how to help his attention issues at home. The first thing dh said when he came home is, "He's your son!" Mainly b/c I have attention issues and coordination issues that seem to have passed on to ds. Never mind the fact that dh himself was ADHD as a child and on Ritalin for 8 years! Yep, that had nothing to do with it genetically at all! Anyway, I'm sorry I had to rant here but I'm looking for ways to help us all. Maybe I'll learn something in the process, too! Thanks, Bonnie

Nope, he's the same Faith. He was really bad during the end of football season in April and I wonder if it was a combination of excitement and field fertilizers that made him majorly wax. Right now he's got a new tic that I contribute to theanine but he never has a tic free day and some days are better than others, this has always been the theme since he started ticcing back in November. Bonnie

Does anyone have experience with this supplement? Our naturo has put ds on a spray that is pure suntheanine. I tried it a few weeks ago at the same time that I had tried a 5-HTP supplement but I saw major OCD with the 5_HTP so I stopped. I also had stopped the spray. I looked back on my notes and saw that he had started a new jaw/neck tic thing shortly after starting both these supps. The naturo wants me to get him back on the theanine spray so I gave it to him this AM and what did I see??? That's right the darn jaw tic again! Now, the spray is a sublingual spray and I saw the tic about 1/2 hour after giving him the spray. The tic has subsided for now but it was really pronounced this AM. So, I'm reluctant to get him back on this theanine obviously. Just curious to see what folks have seen with this amino? He's getting this b/c of his anxiety but he's actually doing quite well on a supplement that has B6, taurine, and 4-amino 3 phynelbutyric acid. Sometimes I feel he needs a boost of something to help him get over a situational anxiety issue but the OCD type obsessive thoughts are gone(and that is a huge relief for me). Thanks, Bonnie

My ds has a year round bedtime of 10 PM. He's homeschooled so we don't have a wakeup time in the AM. Once we start 'real' school in August I'm moving his bedtime to 9:30. Not that this helps you at all as my ds is 9 and I know your's is older. I had a bedtime of 8:00 until I was 12 and then it was 9 when I was 13 and 14. I remember thinking it was very unfair, as well. Can he do something in his own room despite the vocals? Can he read with the door closed or draw a comic strip or play an approved computer game? Reading makes many people tired and he might be willing to go to bed on time if you make him start reading around 9:30 or so. I understand, though, where you're coming from. I need a break from ds's tics and I go to sleep around 10:30-11 and that really is my 'peace time'!