Dalit
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Posts posted by Dalit
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Thank you LLM. you are so right. This forum was our only valid help in many ways, and led us away from conventional medicating solutions, and towards trying altenative ones, which resulted in many calm days for DD. The forum supports us and we should make sure it can be maintained. It's like taxes, isn't it? If we want the services, there's something we need to give in return.
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It's been a while since i wrote in. We've had a few good months after deleting gluten again from DD's diet, and incorporating magnesium and B6/B12.
As some of you may remember, we've been exploring the structutal/TMJ/neck problems connection, and to our detriment, i thought that now that things are so calm, we'll try the Alexander Technique, that deals with good posture, putting less tension on the muscles, etc'.
so DD had one lesson on Wednesday, and started waxing a couple of hours later, and it's been getting worse and worse, until today she even started with some mild hummnig, which she didnt have ever since her tics broke out three years ago (after a few months of very intense facial tics, body tics, and some mild vocals, she was left with the facial tics only).
This may confirm our suspicion that her neck troubles are related to the tics, but it doesn't help us now. Anyone has an idea? increased vitamins?
To complicate things, and just to make sure we are never contemplating one variable only, DD is also 10.5, and just started developing, so it may be the hormones paying here as well.
any advice is appreciated.
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What is this?
My daughter had an MRI of her spine and brain when she had some huge motor tics, to make sure there wasn't more going on.....
No it is a chiropractic procedure that deals more with touch and breathing than with regular adjustimg. i don't know much more than that.
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my son just started orthodontics work and he is using the herbst appliance. The reason he suggested using this was on the way to talk to them about braces my son mentioned that when he brings his lower jaw forward the urge to tic subsides....it was not something he could do long though because it hurt after a bit. We mentioned this to the dentist and Mr. Stacks device and he actually went to orthodontics school with him and he has done alot of research on TMJ...I had it when I was in high school and went to see this same orthodontics but at the time he was just learning and sent me to someone else. Our orthodontics is working up a plann to help his teeth and tics hopefully. He is a believer that the jaw can cause tics so it was a good fit for us to go to him. My son has his top braces on and the device was put on about a week ago. He is doing great. I was worried about them starting up with the braces but so far so good.
What the herbst appliance does is bring the lower jaw forward and he will wear this for about a year and the jaw should grow to the correct bit. Crossing fingers
Mary
Good Luck! I hope this works. This is what our dentist is talking about as well - bringing the jaw forward.
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Anyone ever heard/tried?
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Chemar, my daughter also has tummy issues that seem to go along in trend with tics. She suffers from a very bloated tummy - no gas, no pain - just very distended, scary at its worst. Her "team" of health care providers say that the nerves that go through the neck/jaw affect the digestive system as well.
To answer some of faith's questions: when I said "rest her head" i did mean when she lies down. I just wanted to emphasize the support for the head.
My daughter is almost ten years old, and we started this treatment a year ago. It's absolutely much more complicated than the simple widening of the jaw, and she has been treated by a cranial osteopath, that works alongside Dr. Nordstrom, during this year (Chemar - is it similar to the NUCCA chiropracts? sounds like it is), as well had many constant adjustments to her appliance (that also broke a couple of times - we've spent a LOT of money already). The purpose is to slowly promote growth of the jaw to where it's supposed to be, and in the process to hope that the neck will align. When the appliance is adjusted the doctors "feel" her head (osteopathic technique) to find the right height/positioning of the device, where she is most balanced, and sometimes it works wonders. But obviously, she's still growing, and apreviously achieved balance is quickly over, and a new one needs to be found...
The "stick" test always sounded too simplistic, but I do remember reading about another dentist in Florida (was it Garcia?) that uses electronic equipment to find that point of balance, and builds the device according to that. I remember reading a few success stories last year. couldn't find it now, though.
IF this is indeed the problem, it should be easier to treat in 3 years or so, when she's done growing. We are now just happy for the few weeks at a time when she's at ease, and we hope that we're doing the right thing, and working in the right direction.
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Reading Lynn's post about the dental injury that resulted in increased tics, I feel that I should reopen the TMJ and structural issue.
Our daughter is being treated by Dr. Nordstrom, who invented the ALF design that's supposed to re-align and create balance in the bones of the skull, jaw, neck. (Dr. Sims' and Stack's devices are built on his design).
The theory is (god only knows if it's correct) that imbalances in the way her neck vertebrae sit on top of each other cause constant shifts, as she attempts to balance her head on her neck. This constact micro movement is an irritation to the muscles and ligaments that progresse to the nervous system.
Support for the theory:
1. an ICAT scan we did a year ago shows the neck vertebrae misaligned. the ligaments connecting her head to the neck and shoulders show a process of calcification - as the pressure on them is much bigger than it should be.
2. she can have the wildest tics - wide mouth openings that sometimes last ten seconds each - but a few seconds after she rests her head, they will ALL go away.
3. good in the morning, bad in the afternoon - as the muscles get tired.
4. Even in excelent times, activities that force a very upright posture will triger tics - sitting at the piano, ballet.
5. any activity that results in tight muscels in the neck or back will result in ticcing the next day.
6. she used to have neck problems way before tics started - she used to wake up in the middle of the night with extremely tight neck.
What can be attributed to this in general:
1. the common starting age of tics/tourretes - at a time when the skull and jaw grow a lot
2. observations that tics start/aggrevated by dental/orthodontic work - things that change the balance of the skull and jaw bones.
3. tense postures aggravate tics - TV, reading
4. pre-teen years are bad - when they lose and grow teeth
I know that all of these may have different explanations, but I'm wondering, for example, if anyone else notices immediate relief when the children rest their head.
As for our daughter - it's been very good for the first 9 months of treatment, but a few months ago, when she started losing baby molars. we started going downhill very fast (maybe because the device doesnt have anything to hold on to, as the teeth that are about to fall off, and the bone underneath them, grow weak). It's been a tough few months. Dr. Nordstrom may try to build a temporary slightly different device that relies less on the teeth, and more on the cheeks. We'll see.
It all makes a lot of sense. I just wish we could see more constant results.
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I hope your son is doing better, Lynn.
Reading this brings to my mind the question of the theory of the structural imbalances in the jaw/neck that may cause tics.
If so many children are affected by dental treatment, maybe it is a factor.
Dalit
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Anyone ever heard/tried Low Dose Naltrexone therapy for tic or Tourette?
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[Fixit,
Here is a link to ALF practitioners site. Myofunctional therapists (also called orofacial myologists) are marked in green. I'm sure others can be found that are not associated with the ALF. http://www.alforthodontics.com/Practitione...amp;%20Labs.htm
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What is the general opinion on the theory of Dr's Stack and Sims and the idea of TS being caused by something similar to TMJ. I am the owner of a dental supply business and i have access to a lot of information about this. I have done a lot of research and found out that in the dental industry as a whole Dr. Stack is very highly respected. He is mentioned in some of the dentist's blogs as being one of the top 5 people in the U.S. in his field. (TMJ). I have passed his paper on to other dentists and ortho specialists and they all find his theory plausible. Also my 9yr old son, who is in the next room as i write this and is ticcing about 40 times a minute, has had jaw alignment issues from the start. I have noticed when he gets his braces tightened his tics often go away completely for a while and my own experience with having him use commercial mouthpieces has been mixed, but promising. I realize this subject has it's own thread but it's too long for me. I need some feedback from those who have tried this and some who have opinions about it. It makes sense to me. This thing is really starting to get me down.
Hi, my daughter has been with the ALF appliance for almost a month, and we cannot answer your question yet. The dentist who made the appliance for her said her TMJ is so compressed, he would have had to make her appliance so tall, that she wouldnt be able to eat. So he's going slowly, providing some vertical support, and hoping that as the upper arch widens with the treatment, pressure on the joint will ease. So far tics have been changing from day to day. Some days are exceptionally good, but others are as ususal.
However, from all I've read in this forum, it seems to me that everyone who went to be checked, even if the appliance did not help, is indeed suffering from some kind of missalignment, or compressed TMJ.
So I'm sending the question back to you, as you are in the dental business and have many connections:
Do we know what precentage of the population is suffering from similar missalignments, and is it different from the percentage in the TS population?
It seems to me that a simple inexpensive experiment can answer the question: x-raying a group of TS and a control group of non-TS, and seeing if a considerable difference in results emerges.
Dalit
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Tina,
To pursue the structural side in Detroit, I see a couple of ideas.
1. Find a TMJ dentist for the appliance. There must be a number of them in such a large area.
2. Call the St. John-Clark Pain Treatment Center, in Clearwater Florida, and ask them for a referral in the Detroit area. They have created another approach to structural issues and have trained people in various parts of the country (don't know about Detroit). They have successfully treated Tourette's by addressing bone alignment issues and muscle tension issues. They work on the whole body, including the head, and including issues causing TMJ and that would be treated by a TMJ appliance. I view this as more holistic and complete than just getting a TMJ appliance, but it could also be more time because of that. Perhaps not as bad for a child, though, where bones aren't stuck in the wrong place for years and years.
Michael
Michael's post reminded me that we are also doing some functional work, to accompany the structural. Dd is doing myofunctional theyrapy, to rebuild degraded msucles in her jaw and cheeks, and to learn proper chewing and swallowing. Her upper jaw arch is so narrow, there was no room for her tongue. The excercises are supposed to correct posture as well.
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Dalit - Does she wear the appliance all day? Can she eat with it? HOw old is your daughter? Thank you and sorry for all the questions!
My daughter just turned nine. She is with the ALF all day. Bottom part is removable but she does eat with it. DD's tics started when she was 7, quite abruptly. For us it wasnt an option not to act. When her tics started they were so frequent (every 2-3 seconds) and so strong (a wide, abrupt mouth opening was the most frequent and obvious, but she had many others), that she was physically exhausted.
We tried acupuncture, reducing stress, massages, and tics were reduced slightly. After we found this forum, and at the advice we found here, we did parasite and candida cleansing, and continued with better diet. This reduced the tics even further, and they then stayed in a moderate condition, very manageable, but still there. We never had much success with supplements. Maybe we didnt get the right combination. We then let go, and tried to live with it as it is.
But a few months ago, still at a very managable level of tics, dd started having minor OCD, very light, just a few times a week, for a few seconds (touching things twice, for example). We went back to research, as we found the prospect of OCD increasing very scary, and we then found the Dr Sims discussion.
It made sense to us, and we investigated further. And that's where we are right now. Hoping that it will work.
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[Dr. Sims will adjust the retainer but we were trying to get it done locally so we would not have to fly. It has been awhile since I have been on so I do not know what a ALF is. Is that the upper wire that Dr. Stacks puts on?]
Yes the ALF is the upper wire, which is supposed to balance jaw and skull bones.
By the way, my husband brought home today a brochure from a dentist office, that advertises a lower teeth device for athletes, that looks a lot like the device Sims and Stack are using. It claims "unleash your athletic potential", and is based on the fact that a natural tendency to clench teeth pinches the nerves that go through the TMJ and releases cortisol and similar stress, fatigue and distraction inducing hormones. Thought it was interesting.
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Thanks for the update, ccc. I am surprised that Dr. Sims does not adjust the appliance. When i spoke with Dr. Stack, I was told that an adjustment will be needed every two or three monthss. The ALF is also being adjusted every few weeks.
I've also been holding off on updating as i wanted to see how things change. My daughter got her ALF appliance about 10 days ago.
In July, as we were getting ready to go to DC to see Dr Stack, we talked with him on the phone, and he told us that if we're in California we better see Dr. Nordstrom, the developer of the ALF. By Dr Nordstrom's recommendation we started seeing a cranial osteopath for a few weeks (Dr. Dolgin), and after that period we met with Dr. Nordstrom. He built an appliance for her, and she got it 10 days ago.
I can say that by the first week of the treatment with the osteopath, My daughter's tics improved 80%. It was the begining of the school year, and she was having quite a noticable increase then, so the immediate decrease was obvious.
On the day she got the ALF, Dr Nordstrom showed us her ICAT xray. The xray shows a very constrained left TMJ, and neck vertebrae that sit very unevenly on top of each other, creating a lot of muscle tension, as the body tries to hold the head stable. Dr Nordstrom told us that in order to really open the joint up and relieve the pressure, he would have had to make the appliance really high, which would have made it very difficult for her to speak or eat.
So in addition to the lower appliance he built for her an upper appliace too, that's supposed to widen her very narrow upper arch, and stabilize the neck. As the arch widens, the tongue will have more space on the palate, and that's supposed (hopefully) to alleviate the pressure on the joint even further. This means, of course, that we cannot see this incredible immediate difference we saw in Dr. Stack's video... But i have to say that for growing children, this gentler approach does seem more appropriate to me.
The situation has been changing every day in the past week. She had two days without any tics, but other days she did tic a little. None of her minor OCD occurences (like touching things twice) happened this week, but as they are so minor anyway, it might be that we just didnt notice.
We are hopeful that we are on the right track, but i guess we'll only know in a few months. I will update again next month. Dr Nordstrom is very knowledgable and caring. We feel in good hands. By the way, the price of the appliance was very low (1000) compared to Dr Sims'. However, every adjustment will cost $180.
Dalit
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I was wondering if anyone's child has had a negative effect from cranial sacral therapy? My son was evaluated by 5 cranial sacral therapists, 3 osteopaths and 3 TMJ dentists at a seminar on Friday and they all came to the same conclusion without me telling them anything - my son had trauma at birth (true), was colicky from the second he came out (true), had digestive troubles (true). They said he would benefit greatly from cranial sacral therapy. He is doing so well right now that I am afraid to rock the boat. Anyone have any experience?
So this was the TMJ/ALF seminar? What did they say about your son's TMJ? did they think it was pressuring on nerves? You were saying he is doing so well. Is he still with what the TMJ specialist glued to his teeth to alleviate pressure?
Dalit
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Sorry, can I have Cliffs Notes on the 17 pages in this thread? I haven't been on this forum in months.
A mouthpiece stops tics?
What?
watch this:
and read this: http://www.tmjstack.com/casereport.pdf
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love_nfp,
We haven't seen Dr. Nordstrom yet, but the ALF system is supposed to be able to do both things at the same time; correct allignment and bring the TMJ into correct placement. Maybe you should check this out.
Dalit
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Yesterday we went to see the osteopath who'll be working with Dr Nordstrom later on. We've never been to an osteopath before, and it was an interesting experience. He spent almost an hour asking questions (pregnency, development, trauma, etc') and then more than an hour just checking our daughter, measuring bone heights, symmetry, touching various points, checking reflexes, looking at the ways she swallows, opens and closes her eyes, etc.
He says there is obvious asymmetry and insufficiect development of her facial bones, expecially the chin. She also does not swallow properly (her tongue moves backwards instead of forward and up). His theory is that improper tongue movement leads to insufficient development of jaw and skull bones, which then in turn leads to other problems. He referred us to Myofunctional therapy (excersice meant to teach the tongue correct movement and placement in the mouth). Combined with osteopathic treatment (which is supposed to induce the bones into their right place) he says he expects to see a change within a month, that will be further enhanced by the treatment Dr Nordstrom will then do.
Treatment itself is very gentle, and it seems almost hard to believe that it can do anything (gentle touches, stretches), but I've been reading a lot about osteopathy, and it seems like a well established way of treatment. It's been around for a 150 years and (believe it or not) even accepted by the health insurance companies
We are going to try it and scheduled a second appointment already.
Dalit
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Liane,
As I understand, Dr. Nordstrom travels all the time, working with different osteopaths and dentists around the country (mainly in the west coast, i think) in order to teach his method. I'm still not sure how he works with others, but in my case, I contacted him first by email, and after some back and forth correspondence, and a phone consult, his office instructed me to contact the osteopath in LA, and schedule with them. I am still not sure how adjustments will be handled, as he is in LA only once every 3 months. Maybe the osteopath handles them, but we are ready to travel to the bay area once a month, if necessary.
The links are: 1. a list of contact info to all ALF practitioners 2. Dr. Dolgin's website in Santa Monica 3. Dr. Hagopian's details (a second osteopath he is working with in Santa Monica). We will be seeing Dr. Dolgin on the 15th.
By the way, i undertand that Dr. Nordstrom doesn't have a lot of experiecnce with tics, since he was never approached by people to treat it in the past (he mentioned 3 patients to whom he's helped), but he is in touch with Dr Stack, and thinks he can help others. It is my understading that Dr Stack sometimes uses the ALF in his treatment.
http://www.alforthodontics.com/Practitione...amp;%20Labs.htm
http://www.vitals.com/doctors/Dr_Stefan_Hagopian.html
Dalit
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Sorry for not writing earlier. We had some turbulent days. We ended up not going to Maryland.
As I wrote in my last post, Dr. Stack referred us to Dr. Nordstrom, who is the ALF inventor (I added links to info about it in my last post).
It was very hard to get in touch with him, as he is so busy, and his office told me he has a huge waiting list. We scheduled a phone consult with him, and he was not able to call us as his office appointements continued longer than expected.
Since we wanted to take advantage of the vacation, we decided to go ahead and fly to DC, we had appoinments with both Sims and Stack, and had all hotels booked etc. Then, 3 days before we were scheduled to fly, Dr Nordstrom called us. He will be able to see us in October when he comes to LA, and he thinks he will be able to tell if the source of the problem is bone pressure on nerves. So we cancelled the trip (hopefully we'll get some money reimbursed) and went for a close by (less expensive) vacation as a compensation for our dissapointed children.
The ALF method balances and encourages correct bone and joint placement, and it does it gently and over time (they compare it to Homeopathy vs regular medicine - encouraging the body to heal itself, instead of pushing it). This means that results will not be as immediate as in Drs. Sims and Stack's method, but i have a feeling that perhaps for children this is a more appropriate approach, gentler and slower. In LA, Nordstrom also works with an Osteopath (anyone has experience with it?). he think that combining treatments works better, helps in diagnosis, and improves results. our appointment with the osteopath is in two weeks.
mylittleangel, I think taking your son's case to the convention is wonderful.
It seems to me that there is a simple inexpensive scientific experiment that can be conducted. I am trying to run it through people I know in the school for pediatric dentsitry, and maybe you can suggest the same to your contacts. What we really need to know is whether there is a larger precentage of TMJ problems in the tourrete and tic community than in the regular population. All that's needed for preliminary results are a few dozens ticcers who'll agree to take tmj x-rays, and the same for a control group.
Dalit
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love_nfp
I love your idea about paying consultation fee and working with a local doctor. I have to say i dont think they'll mind. When I called Dr. Stack and he heard I was in California, he hurried to refer me to a doctor here. Turns out that dr. Nordstrom is extremely busy and isnt taking new patients, but I suggest you read about his method called ALF and the way it treats skull and jaw imbalances. I think a doctor treating with this method will be able to take on and do what Dr. Stack and Sims found out. I am adding links to two websites, one telling about the method, the other with a list (not long at all) of practitioners. You'll see that dr. Stack is one of them. I hope one of them is close to you.
http://www.alforthodontics.com/Practitione...amp;%20Labs.htm
http://www.holistichealthsource.com/ALF.htm
Dalit
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momof4boys, thank you for sharing this with us.
I think that finding the right health care professional is the hardest part, and once you find someone who's knowledgable and also cares about what he's doing and about the patient, you're on your way to improve.
This brings me to ask momof4boys, but also everybody else here: If you find the right doctor, and once you know and trust them, ask them if they know other doctors that they trust, maybe they met them in a conference, learned from or taught someone else their methods. Especially in other states or even countries. Then post the names here. This way, other people who live far away can try it too. Maybe we can open a new thread that will be a list of names and speicialty of doctors, homeopaths, etc'?
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Thank you, Vanessa, for researching and posting.
I do agree with the professor that as a research paper this article does not follow scientific methods. I also agree it is unethical to provide false hope for a cure-all when not enough evidence has been collected. I do not believe, though, that this is "snake oil". I trust the mothers I talked with who told me how much this helped their children, and i trust that Dr. Sims does believe he has discovered something significant.
I guess for now this is a "maybe it will work", and this is what all of us here are doing all the time. The diets, NAET, cleansing, etc', all of these haven't been proven as well, and we still take a chance and try them.
I think there are two people there today. Let's hope this can at least work for some.
Dalit
New Here
in Tourette Syndrome and Tics
Posted
Welcome. We've been on the forum for three years now. Thanks to the shared knowledge here we've kept our daughter off medications, and her condition improved tremendously. She started ticcing at age 7, very abruptly, with the mouth stretches you're describing your son has. In the begining she was ticcing numerous times a minute, and it was very stressful on her body and mind.
We tried accupuncture first, and she still sees an accupuncturist every couple of weeks. i feel that this treatment (which may be much less expensive) has done a lot of good for her (in reducing tics, but not eliminating them). Her accupuncturist also practices NAET, which can be used to diagnose allergies or sensitivities (some say can cure them as well). This is helpful in deciding what to eliminate from the diet. By the way, my daughter had childhood asthma (cured at age 4 - accupuncture and NAET), and has those dark circles under her eyes, too.
We found that eliminating gluten is very helpful. If corn has an adverse effect, try almond flour instead. it's easy to bake with and very healthy. There is a company in Southern California called Honeyville that specializes in that, and it will cost you much less than in whole foods. (it does come in large quantities - you can just freeze part of it, and it will be fine).
The whole alternative medicine journey does tend to get very expensive. We've tried homeopathy (very expensive and didn't help our daughter), as well as the TMJ connection (may be helping, we're still on the fence about that). Your son is 7 and just started ticcing, so it may very well be a transient tic disorder. You can start with the simple things - magnesium, good vitamins, eliminating foods, and give it a few months, before you turn to the very expensive practitioners.
Good luck.