Any one heard of Dr. Sims

[faith]

His persistent irritability is very, very difficult to live with - even more so than the tics. Anyone else experience this?

 

 

Does the line form here?.......lololol........

 

 

Faith

[faith]

Doxie,

Does your son have any other issues like ADD, ADHD, OCD, ABC, JFK?? no seriously, any other comorbid issues, especially in the attention area re school? And forgive me for asking again, you are saying he blinked all the time before and now he is not. you sure? lol.

 

Faith

[faith]

double post deleted

[doxie]

"His persistent irritability is very, very difficult to live with - even more so than the tics. Anyone else experience this?"

 

Distinguishing between normal teenage surliness and irritability from TS is challenging, however, I can say that my youngest son has been a "bit" lighter with his mood since getting the retainers. Although, the way he was acting yesterday after school- he was far from the cute, adorable child that I like to think is mine.

 

FYI - my middle son, who does not have TS was chronically irritable in high school (now a freshman in college and only slightly better as long as I say exactly the right thing on the phone....lol). My oldest, is the easy, breezy, good guy. So - bottom line, so much has to do with their own genetic predispositions. However, it would make sense that the overriding tics going on every moment of their waking day is so annoying - and just another layer on top of all their "stuff".

 

I will certainly ask Dr. Garcia about the braces on Thursday.

 

Beth

[doxie]

Faith,

My son is severly ADD bordering at times on ADHD- so balancing the TS and ADD has been a real challenge. We have been on every drug imaginable. And I really, truly tried to avoid this route - but he was not successful in school The magic formula at the moment is Tenex 1 mg twice a day to help with the tics, and then Adderall XR 30 mg for the ADD. He had a big upswing of tics for 3 days after starting the Adderall, but it subsided (as the psychiatrist said it would). He has only been on the Adderall since August - previously he was on Abilify and Ritalin L.A. My son hated Abilify - it really seemed to numb him out - and make him so flat-lined. Sad to say he was on it for almost 3 years. He took himself off of it gradually this summer, and the tics never escalated. However, the Ritalin LA, which previously had worked, was doing nothing without the Abilify. When he came off of the Abilify, it was like a veil lifted.

 

Our goal will be to remove the Tenex once these appliances are adjusted and he is stable. I probably will wait until winter break.

 

And yes, Faith, NO EYE BLINKING. I know - I can't believe it either....

[faith]

Thanks Beth,

Altho my son is holding his own academically, I know he is going down hill on the attention and focus and is admitting this himself. I know its a matter of time before its obvious he is ADD as well. Could you keep us posted if you see any of his attention/focus/irritability/schoolwork becomes better overall as well? or do you think that is a separate issue?

 

Faith

[MichaelTampa]

Dr. Sims told me a couple months ago how he got involved in all this TS stuff, and I don't remember the whole story very well. It is something like a friend of a friend found relief from, I think tics that was not considered TS, by getting a jaw adjustment like this type of device. The friend asked Dr. Sims about TS, since he knew someone with TS. They gave it a try, had some success, and that sent Dr. Sims to go out and figure out how it could be. He says he spent a lot of time in the libraries trying to explain it, which I believe he has, at least fairly well. He will tell you, this is not knew information he is giving out, just information others have created that he has put together.

 

I want to update my last post, saying that carafate (contains aluminum) has caused the TS-like symptoms to increase, even while wearing the device. I am on another drug as well (omeprazole, a proton pump inhibitor, designed to reduce acid, I believe the generic of prilosec). My conclusion that it was the carafate was based on the symptoms being TS-like, the knowledge that heavy metals and TS have some history together, and the reaction getting better when I reduced. I was just at my acupuncturist who does muscle testing, and she really believes it was the omeprazole--not the aluminum from the carafate. Just wanted to follow up with that possibility, in case anyone was trying to draw conclusions regarding cause of TS from that situation. Not sure what to believe at this point, I think I'll see more over time as, unfortunately, I will probably need these drugs for a few months. Her muscle testing has been fairly reliable, I have seen her for a couple years now, but, it is less reliable with drugs.

 

Reading the last several messages, reminded me of something as well. Sometimes these TS drugs can actually cause tics. I have heard of a number of cases now, where people get off the drugs, and the tics go down, not just during transition but long-term. They have been on them long enough they didn't realize how much the drug was actually causing. I say that in light of, with this device, all these theories are nice on the nerves and all, but, if you add drugs to the picture, it certainly is going to be less predictable. I would wonder, if someone tries this device but is also taking TS drugs, the drugs could mask the real result. In a way, it's just what I experienced this past weekend (discussed in the above paragraph and previous post). The drugs can be so crazy and unpredictable!

 

Beth--Just want to say, yippee! for you and your son, glad to hear things are going well with these new devices! Since I am still trying to figure out whether to go back to Dr. Garcia myself, I will probably have some questions for you, but my mind is a little too garbled to figure them out.

 

Michael

[faith]

guy,

you mention that you have TMJ? when and how did you discover this?, and what was the treatment, if any? did you wear any mouthguard type thing?

 

Faith

[MichaelTampa]

Goodness, just when I wanted to use an emoticon for the very first time, I can't find one I like. Don't we have one for, "hey, wow, I have something I want to share that I'm quite excited about"? Anyway...

 

As I had mentioned, I wanted to consider a local pain clinic approach before going to Dr. Garcia to get another splint and hope it was better enough to be worthwhile. The place I went to is St. John-Clark Pain Treatment Center in Clearwater, Florida. They might be roughly described as doing adjustments to your bone but not the way chiropractors do it. They use deep tissue work to adjust bone placement. In some cases, such as mine, they will determine that there is an issue related to mismatch of length of leg bones. For example, your right leg can be shorter than your left leg. If this is true, they get you a prescription for something to implant in your shoe (cost me $22 each in shoe repair shop). This length mismatch can cause the spine to bend like scoliosis, and eventually the nerves going into your head, and the bones in your head, are out of place, in order to compensate. The bones need to do this so you can balance, but this obviously can cause problems. Fixing the leg length allows the bones to straighten out, with the help of the deep tissue work. I hear from the person who referred me that it is possible to get homework exercises, but my therapist there has not mentioned that. I was just there yesterday for the first time, and I'm sure we'll get more into next steps later on, first he'll want to see next week how much my bones have adjusted on their own.

 

It turns out that I got to meet another patient this same therapist has been treating successfully. He has been treated there for TS, apparently with good success. Not comfortable telling more of his story on this board, as it is his story. I will be e-mailing him my e-mail address and about this board, so hopefully he will come aboard and show more. As an aside, for me, it was the first time I got to really meet another person with TS.

 

They have a lot of 3-dimension aids of bone structures, like fake skulls and whatnot, so I could actually understand what he was talking about. The thing that excited me the most was the prospect of getting the light sensitivity fixed. He showed that moving the jaw with the dental device doesn't really impact the optical nerves and where they could get pinches, which is normally what causes that symptom. Seems like there is a good chance this adjustment will lead to fixing that. He believes I will end up needing less of an adjustment on the jaw, as compared to what I have with the current device from Dr. Sims, and maybe just maybe not one at all (I'm not quite that hopeful about not needing the jaw adjustment at all!). That was what I bemoaned most of from Dr. Sims and Dr. Garcia, wishing they could talk in terms of which symptom is caused by what type of problem or location, rather than, well, we'll just try and move the jaw somewhere and hope it works. Of the two dentists, I do think Dr. Garcia has more experience doing these adjustments, and is more sophisticated in measuring where to make the adjustment, just as part of being a TMJ specialist.

 

My plan is hold off on any new device, see what improvement I can get from this place adjusting other bones in the rest of my body, and then go from there. At least, then, if I still feel I need a new device, I'll be more set in terms of deciding on how much of a jaw adjustment.

 

This place really is different than chiropractors. They have a very special way to do an X-ray regarding leg bone length, different and more precise than chiropractors. Without fixing this, chiropractors may do their best to keep straightening things out, but in a way, they are treating symptoms of mismatched bone length, and the treatment will just not stay.

 

Faith--I know you are going to a chiropractor and experiencing an uptick on the tics, if you will. Is that still how it is going, or have things changed? My two cents, for what it's worth, I do thing there's a good chance there is a structural issue for your son, and his reaction to the treatments is because of that. A lot of treatments, even good ones, will exacerbate symptoms for a while. My acupuncturist has told me this frequently. The only question, if it is the right way and helping, or not. Full disclosure--I have been to two different chiropractors over the years for my headaches and light sensitivity, and have never been helped by it, and they just kept doing the same thing time after time. What they tried was different, but that was how it went with each one. If you start really seeing good results, that's great, but if not, or just curious, I'd definitely suggest going to someone trained by this place I went to. If you have a local one, it's at least not too expensive like the Dr. Sims big investment in the beginning. Here, the investment is something like $22 per pair of footwear (if leg length is a problem), plus probably an X-ray, and an initial office visit. Then, it is a charge for each visit, and you keep going as long as it's helpful.

 

For anyone interested, this place I went to has about 5 therapists. Mine is Paul St. John, the founder of the place. He has trained various people across the country, and they are happy to take calls and refer you to a local person who he has trained (if your area has such a person).

 

Michael

[Chemar]

Hi Michael

 

chiropractic adjustment has been an integral part of my son's treatment protocol for some years....he likes to go for an adjustment first and then follow with acupuncture session/reflexology session

 

we see only NUCCA chiros as their methodology is different from conventional style chiro work.

 

apart from the chiro helping put back in alignment that which the tics sometimes put out, my son also finds the deep therapeutic chiro techniques they use has overall beneficial effect for his tics and more. Not a cure...but very calming for him

 

hope what you are having done will be very helpful for you

[MichaelTampa]

Thanks, I gave that NUCCA a look, and I will try to keep that in mind if the route I am currently going doesn't work out.

[faith]

Michael,

Re the chiro work we are doing, I don't think he is worse because of the treatments, I think he just hasn't benefited as much as I'd like. One thing he does do tho, is that before he does an adjustment, he checks my son's legs length to see if they are even or slightly off. you could see how one is a slightly longer than the other, doesn't look even when he puts the two shoes together. Then he knows that something is off and needs adjusting? I don't know if that is the same premise that you are describing tho. What would make you go the a "Pain Treatment" center? I guess you already knew what type work they did there?

 

Are these chiropractors, but they just have a different way of treating? Is this like craniosacral? Did he agree or disagree with premise of Dr. Sims re the cranial nerves? Was this optical nerve one that Dr. Sims beleives is affected by the trigeminal nerve involved in TMJ? or did he think it can't be helped by the jaw work? all so confusing.

 

 

Faith

[love_nfp]

I'm interested in the leg length notion. I took my son to a chiropractor for 1.5 years. (Well, most of the time I had to drag him there.) He put his feet together and checked to see if they were even like you said. He did the same adjustment time after time. I also bought "foot levelers" but they were not $22 - more like $200. They were like a custom orthotic with the spine in mind. To be honest, I don't think any of it did any good although I don't regret trying that route. We quit going when the chiropractor started something new. Instead of a manual adjustment, he used an instrument and tapped the spine and skull in certain spots and "asked my son's body" questions. At first I thought that he was using figurative speech. After two visits, I realized that he was literally asking my son's body questions telepathically and supposedly getting "yes or no answers" from my son's occipital bone in his skull. For example, "Is something wrong with C5?" or "Does your body need more water?" "8 cups? 9 cups?"..... If the bone dropped when he asked the question that meant an either yes or no answer to the question. Sorry, but this seemed hokey to me. Also, my son had a scary reaction from the "adjustment." He was weak, hot and nauseated. We were told that this was part of the healing process and that trapped energies from old injuries were resurfacing or "uncoiling." He said that the body has an innate wisdom and can tell him where and what healing needs to take place. None of this squared with our religious beliefs, so we never returned. My son didn't want to go back anyway. I want to believe that the chiropractor wasn't ripping me off. He seemed like he genuinely wanted to help us. I hope that he was simply misguided.

[MichaelTampa]

love_nfp--That type of testing is something a number of my healthcare providers do or have done. My acupuncturist does it all the time to manage all my supplements. She doesn't tap, she touches and ask if it is good for me, how much per day, and so on, and it mostly works. The proof is in, when I do what she says, it helps, when I try going off the things she says I still need, I feel weaker, when I try things she later tests as bad, I have problems. It's not 100%, but pretty reliable. It's less reliable with drugs, and the harder questions your chiro was asking. Like, I was just having side effects, and she was asking separately for each drug, was it causing this side effect, was it causing that side effect. She concluded it was mostly the one drug, omeprazole. But, the proof is, each time I increase dose of the carafate (has aluminum), they all get worse, when I decrease, the symptoms decrease. Time and again. I think this testing does have limits, and your chiro was right around those lines from my experience. But, then, probably each provider has different skills and each patient can be different in some way that affects how well that works. (For those remembering my earlier comments on this thread, I'm going back to my statement that carafate is clearly worsening my TS symptoms--even while wearing the Sims mouthpiece. It's always possible it's any of the various ingredients, but I can't help focusing in on the aluminum as the reason.)

 

Faith--An emotional/psychological therapist (EFT etc.) I am no longer going to mentioned it to me a couple/few months ago, as really addressing structural issues that can cause things to go off, said she was very impressed with the exactness of the work. She was a patient (may still be, don't know). It was just before this thread began, and I was drawn more to the idea that I knew that it was my jaw that was off, and going to Dr. Sims to fix that. This local clinic lists TMJ as something they will treat, so, as I was looking at TS as a version of TMJ, it seemed a good place, but not the quick-fix like I was hoping for Dr. Sims. That's the appeal of the jaw work, getting a splint is quick-fix, if it works, great, you know quickly (helped me great with some things, not others at all). Paul St. John absolutely believes the Dr. Sims trigeminal nerve stuff can cause TS symptoms. As he brought his other TS patient in the room and the 3 of us were talking, it got quickly to that topic, and he brought out this book and looked for a picture to show this other patient about this nerve. I did manage to pull out from my backpack the picture Dr. Sims hands out, just before he found the right page, but, of course, they were the same picture--this was the book Dr. Sims got the picture from (I believe it is a very popular book, my acupuncturist has it as well). From what he said, my impression is that Paul St. John believes the Dr. Sims device can be helpful for some, but he probably sees his own work as primary, as he says I may need less of a jaw adjustment, or maybe not one at all, when he is through with me. His approach seems to be to fix the legs, which affects the hips and spinal cord and head bones, and then see what you need from the jaw. He also said, by now, I've had a good bit of teeth wear from the misalignment and grinding and so on, to some extent, the adjustment would likely be needed just to offset that. Regarding the nerve I was calling the optical nerve in my previous post, my impression is that this is a different nerve from anything Dr. Sims was thinking he would affect with the jaw adjustment. The trigeminal is big, and really important and all that, but there are many more smaller ones, and this optical one goes through a really tiny hole. If anything is off a little in the skull area, that can be pinched as well. I didn't directly ask Paul St. John if this optical nerve could be fixed by jaw adjustment. I guess anything's possible, but I doubt it. Leg length can affect so much because it can affect spine, and spine can affect so much in the brain. But, I don't think too much relies on jaw placement, similar to, maybe moving your hand around isn't going to affect too much in your feet. But then, moving your hand can affect shoulder muscles, so, who knows, maybe moving jaw has a bit of an affect on things nearby but not directly in line of fire. (I'm just guessing here, really, we did not discuss, but it just looks like it's a different place to me.) They are licensed as LMT and CINT. LMT is for massage (they do deep tissue work to help the bones go back to where they belong). CINT, don't know exactly, but think NT is for neuromuscular therapy. They are not chiropractors it seems, but are trying to put your bones back in the right place (as chiros try to do). I can't compare it to cranial-sacral, because I don't know exactly what that is, and haven't had any massage type treatments yet, just got the implant yesterday, next time they will probably do work, but it won't necessarily be in the head area, we will see.

 

All this leg length testing, what you describe is what Paul St. John describes as the typical chiro way of doing it which is completely useless. I've had it myself years ago. First of all, all he's done is pulled and prodded and pushed, and by the time your son makes it back to the car (or jumps up and down once or twice), he'll be right back where he was (as far as leg length related adjustments). That's the good news, he's doing no harm. That positioning has developed over years, from walking with improper length legs (if he has that), and if he sends your son away with the same length legs, he hasn't made much of a lasting impression. But, the bigger point here is that these leg lengths cannot be determined by quick inspection. Paul St. John spent about 15 minutes carefully measuring where different left and right bones were in position to each other. For example, bottom of left knee is higher/lower than bottom of right knee. Left shoulder is higher/lower than right shoulder. And so on. From this, the average bear would conclude that it looks like my right leg was longer by 5 mm. Then, he spent 20 minutes teaching me how to stand for the X-ray he was sending me to get. This positioned things where the legs would truly reveal their length. It turned out from the X-ray the right leg was shorter by 5 mm. How does this happen? The pelvic and hip area bone (don't know the fancy word for that is very much 3-dimensional and rotate in any kind of variety of ways to distort where the leg bones end up. Chiros typically get X-rays at the top of this area, so they don't see the distortion. This place I went to gets the X-rays at the bottom of this area, to really see about the legs. In my case, this would have resulted in a different conclusion by 10 mm (1 full centimeter).

 

Forgot to mention, I also discussed my hiatal hernia with Paul St. John. I have had it for years and years, but it was officially diagnosed with an endoscopy about a month ago. He considers these as tears of a muscle (I assume diaphragm muscle), they will not repair without surgery, not that anybody recommends that, there are a lot of sensitive nerves in the area, and that surgery often provides poor results. But, he did say, again, it's a structural issue, with leg bones and pelvis and spine out of place, things get pushed in the wrong way and cause this. He says these adjustments he is doing will at least prevent any further tearing. Just want to point this out, we talk a good bit about digestive issues and do our best to deal with them, I hear they are extremely common with TS, but not much discussion on what is causing that.

 

My acupuncturist was a little leery of the adjustment, and then it tested (her muscle testing) as good for me, so she is happy, but still was trying to tone down expectations. Reality is almost all of us have something off at least a little bit. Mine was probably more than a little bit, but still, I guess making me realize still it doesn't mean it will be the answer, but it is nice to try and we will see. We were joking, I just keep getting extras for my body. A shoe implant now, and I already have glasses and a hat (both for fluorescent lights) and a special watch around my ankle (resonates Schumann frequency, same as earth frequency, strengthens chakras, emotionally grounding). Looks like next up should be some fancy belt!

 

As an aside, or not, I have had headaches almost nonstop since getting this shoe implant. Hoping it is good news that we are fixing things, and that it will STOP SOON! But we will see. It could also be related to my carafate (with aluminum), and I am going to do my best to figure that out today. I can always stop the drug temporarily and see what happens.

 

Michael

[love_nfp]

Hi, just wanted to give everyone an update. My local orthodontist is/was willing to work with my son. He contacted Dr. Stack and spoke with him. Dr. Stack sent him a DVD which is a longer version of the guy on youtube. Apparently, youtube videos have a limit of 10 minutes. I haven't watched the whole DVD yet.... Anyway, we made various tongue depressors of different heights and held them together with the little rubberbands that are used for braces. I stacked them 3, 4, 5, and 6 high and cut them to fit in my son's mouth. I am very disappointed, it did nothing. My son said it made it worse. ..... I'm glad I didn't spend thousands of dollars to find this out, but maybe we are doing something wrong. Should we give up? Any suggestions?