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Update on my son with Dr. Sims


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So sorry it has been awhile since I have posted. I have not been on the board in a long time and have seen that many people have asked about my son. I honestly just had to walk away for awhile. I was becoming obsessed with finding a cure that I stopped focusing on life. So here is what has been going on. My son has woren his retainer since day one. Only to take it out to eat or this summer when we were on the lake. Did not want to take the chance of it falling in the lake. Let me start off by saying that my sons tics have NOT gone away however for about 3 months the severity has been less. I first did not think so but it took family and friends telling us thet noticed a differnce. During this time I finally let go and realized that my obsession with fixing him was only making it worse and that I need to accept him and let him be a kid. That was a big on for me. We had tried diet and supplements. We had every blood, urine, hair, stool and allergy test done. Tried all of it. My poor son lost weight because there was so little for him to eat. We as a family eat very healthy compared to most Americans. My kids think if they eat McDonlads they will end up with some horrible diease. LOL Not really but we do not eat junk and avoid all artifical and try to eat as much organic as possible. But I never noticed a change in his tics. So I decied to lessen the restrictions from the Dr. and let him have some things he showed an allergy to. Like gluten and casein etc. No change. By the way the diet and supplements were all before Dr. Sims. We stopped everything before we went to see Dr. Sims. Anyways over the last 3 months things have been great. His tics were not even an issue until last week when all of a sudden vocals like crazy. This has been going on for over a week. I can't understand why. It is hard for me to feel like it is diet because nothing has changed. Every now and then I will let him have something not healthy but in the past no change. As far as the retainer it is woren down since he got it. We noticed also that he had broken one of the prongs off. He has a bad habbit of playing with the retainer. So I wonder if the tics came back because his retainer needs adjusting or if it is just the nature of the beast. I do feel strongly in the fact that when I let go of trying to feel like I needed to fix him and just gave it to God things were better. Thats why I stayed away from the board. Not that the board is bad it has been a life saver for me and I am sure many others. I had gotten to a point that I could not stop and get off the boards so I had to walk away until I could balance life better. Hope everyone understands. I was not trying to avoid anyone. We have emailed Dr. Sims to see if he can refer someone locally to look at his retainer but have not heard back yet. Just eamiled him yesterday. I will let you know of any changes. If anyone has any question feel free to ask. Something my friend told me today that really encouraged me was she said your son is not broken so stop trying to fix him. It really made me stop and take a look at what is important. I know as a mom we just want to fix everything. We never want our children to hurt or suffer. I ask my son last night if his tics were bothering him and he said no. So I said to myslef "If they do not bother him why should they bother me." Sometime I think we as moms just need to remember that we are not alone.

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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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[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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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.

 

That's very interesting. I've noticed that when I lift weights I clench my teeth a lot. The other day one of my molars was even sore after I got back from the gym.

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Wow, you and I are on the same page with this! 100%! My son is not on a retainer, but for about 3 years we had a pretty strict diet with lots of supplements and all the battery of tests. (Well, not heavy metals) Bottom line: I hit this epiphany the other day when I thought, "I have to stop fixing him. He is beautiful the way he is. More than that. He is HAPPY."

 

He's ticking a bit more today. Was it the pumpkin pie at Thanksgiving? Was it the cafeteria food? Don't know. Am going to try and stop obsessing. He eats super healthy and we stay away as much as we can from "food allergy" triggers. But occasionally, he's going to eat like a normal kid. It's hard enough to be different without sitting alone at the end of the lunch table munching on tasteless muffins.

 

For those of you who are adhering to the strict diet, I am not knocking you. I actually commend you. I, personally, have decided that since my son has "light TS" and it's not affecting him, I don't want to have him on the insane strict diet now.

 

I'd love thoughts from both sides.

 

In closing, I'm aware, too, that in trying to fix my son I was subconsciously trying to fix so much of myself that I didn't like. It was so buried in my subconscious that I didn't even realize it. Oh, sure, I said "I dont' want my son to be teased so I'm helping 'cure' the TS issue" but really... deep inside... I didn't like being teased as a kid and didn't want my son to go through it. But honestly, this is HIS life, not mine. I am working on my own self-esteem issues - weak areas I didn't even know existed - and in relaxing, my son is doing much better.

 

God bless to all of you!

 

Andrea

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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 15 year old son is wearing the appliances made by Dr. Garcia in Tampa. He does wear his day time retainer while eating (per instructions) and has had approximately 3 adjustments in the 4 months he has been wearing it. His motor tics are considerably better - almost 90% gone. He never had verbal tics.

 

I completely relate to your mind set about deciding not to "fix" your child. My knee-jerk reaction to anything is to "fix" - and I really am trying to shift. NOT EASY! I do try to keep only healthy foods in the house, and buy as much organic as possible. But when my ds wants a rare treat-a slurpee from 7/11, stays up too late and doesn't get enough sleep, skips breakfast, I am really trying to bite my tongue. I realize my incessant vigilance over every aspect of his life isn't good for him - and it certainly isn't good for me.

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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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Currently, my eight year old son is on diet restrictions, which appears to be helping mood, frustration and anxiety. Diet does not seem to affect his facial tics and hopping tics at all. We do see a reduction in the tics after cranial sacral therapy, concentrating on the head neck and mouth. Interestingly there is one area that when it is worked actually stimulates more tics during his treatment.

Perhaps his tics are structural too. But who would we talk to in the Detroit area? I'd welcome any input.

Thanks!

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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

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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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I went to Dr Garcia and Dr Stacks.

And let me say they are both very personable characters, who do want to help.

 

Real quick if i may....my journey with this though time wise short there is alot to tell and i will have to write it up tonight but let me ask these

 

1)CCC, Dalit is there any history of tics for either of you?ccc did vocals go away during this time and let us know what happens when your ds gets adjusted.

 

2)Micheal have you gone to get readjusted? Dr St thinks the device for my ds per Dr G should be 4mm higher which is quite alot when you here them talk about 1/2mm increments. And as dr st says right now its more of an art form then science ie 1/2 dose this, to the right does that. But dr G might be going slow like Dalit said???

Also MT i am waiting on my sons camK....his first report looks like yours but high end of dopamine (i think)(i wonder about his Iga levels)

 

3) guy123.....did you see where your last set of teeth typically come in at age 17....though a friend of mine who had to have the gamma knife for tmj at age 30something (as i was talking to her she realized) her wisdom teeth didn't come in till 29 ish when her problems started

 

And both docs say it could be immediate but could take weeks to see results

 

Not seeing result yet, and a couple days seemed worse, very sad,..but last night my ds said he thought it was better?????? I think he's hoping that will continue and he can very articulate about whats going on...so i don't know

Maybe what i see and what he feels are different?

 

4)Doxie since i'm writing, didn't you say you thought it was worse but he felt better....maybe i'm on that curve!!!!!! He's still doing well right!!!!

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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.

 

where do you find this kind of dr...i think i need some of this for m ds and his posture as well?

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Fixit,

 

No, I have not gone back to be readjusted. I live in Tampa, and Dr. Sims is in Maryland. I went to Dr. Garcia to get readjusted, but he instead wanted to sell me his different kind of appliances. Really, I saw some results, they were immediate, and they have not gone away. It seems it has done what it is going to do, and I have other issues that need other solutions. I am now looking into the very real possibility that I have PANDAS, waiting for a blood test result and trying to line up a doctor for that.

 

Michael

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