momof4boys Posted August 3, 2009 Report Share Posted August 3, 2009 I want to share what has been working for my son We have been seeing a chiropractic neurologist for about 6 weeks (started in late June) and have seen a dramatic improvements with his tics. They are almost non-existant at this point. My son will be 6 in September and has been ticcing since the age of 3 but was officially diagnosed in March with TS. He is also fine motor delayed and has speech issues. He will be starting kindergarten in September (he has an IEP) and will be receiving OT/ST. I was not aware that the field of chiropratic neurologist existed until a facebook friend saw one of my posts about my son (we were having a difficult day) and e-mailed me a link to a doctor who could help him. Like all of you parents, I am quick to check into any type of treatment possibilities for my son to help improve his TS but am also very cautious because I have been disappointed many many times in the past. Chiropractic neurology is a specialty field that requires an incredible amount of education and experience for certification. You can google it and read more about it. There are quite a few physicians websites that come up that you can look thru to get a better understanding of how this works. There is also an American Chiropractic Neurology Board that has doctor locators. http://www.acnb.org/ We live in NJ are are seeing Dr. Kiechlin. He has 2 offices ~ one in Princeton and one in Bernardsville. Here is his link. http://www.peakchironeuro.com/ I credit him for being one of the first doctors to truly help us towards understanding more about TS and helping my son begin his recovery. At its worst, my son's TS involves eye rolling, sideways glancing, mouth grimacing, neck turning, sniffing, shoulder movement, humming, etc. He has the most difficulties when sitting still (in school, it was worse at circle time, anytime a video was showing, etc) He was not able to keep his eyes focused for very long because the movements kept disrupting him. He always looked wrecked and tired and complained of eye and ear pain due to the ticcing. Meeting with Dr. Kiechlin was am amazing experience. He works with many TS children, autistic children, ADHD, etc. His practice is not limited to children, he successfully treats adults. He knows so much about TS (actually knows more than our regular neurologist. ) I filled out a huge amount of paperwork and the questions were very detailed. He did talk to me on the phone before I even considered having a consultation and recommended that I read the book "Disconnected Kids" by Dr. Melillo so I would have a better understanding of where he comes from and his treatment plans. I have not received any reimbursement yet from my insurance company (hoping to get out of network benefits) because the office does not participate with insurance plans. He uses different tests to establish which side of my son's brain needs extra help and then focuses his treatment to build up that side of the brain. If the brain is in synch many (if not all) of the ticcing should stop. He uses a VNG testing device to check his progress. We get specific exercises (some of my son's involve spinning on a chair and then making the eyes focus on a specific target and watching to see if they can maintain their position) but the exercises are specifically for either the right of left side of the brain. He will also give chirpractic adjustments at the end if needed. It is incredible how much this doctor knows about how the brain functions, which part needs to be stimulated so his nervous system will begin to heal, etc. For the first time in our journey of nearly 3 years I finally have hope because I am understanding how the brain works in those who have TS. The other doctors we have consulted (mainly neurologists, allergists, primary care physicians and TSANJ counselors) have done nothing but frustrate me because they are quick to diagnose "oh your son has TS, a genetic neurological disorder" but never explain WHY these movements are happening and what part of the brain is responsible for the symptoms. We have learned a lot about his allergies and food sensitivities and have gone organic/green over the past 3 years but FINALLY a doctor has stepped up and is showing me HOW the brain works and WHAT can be done to help my son. I have been following so many of your experiences and have learned so much and am so grateful to you all. I just wanted to share what is working for us and although I am new to this experience with our chiropractic neurologist I didn't want to wait too long before I posted. Please feel free to ask me questions. I am no expert but am learning along with my son. At the moment the only ticcing I see is an occasional eye roll and sometimes my son still pulls on his ear (complaining of pain). At night time I hear a few vocal hums but it is sooooo much better than it was, it amazes me. Everything else has stopped for now. The "old" me would have thought that it was a typical wax/wane cycle, but the "new" me believes that the absense of many of his tics is because of the fun and challenging exercises we are giving his brain is actually beginning the healing process. Wishing you all the best along your journeys... sending you all hugs and a lot admiration for your amazing children!!! 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mommyof2 Posted August 3, 2009 Report Share Posted August 3, 2009 Wow I am so happy for you to have found a good doctor, which is the most important step, and a drug free alternative for your son. Are you giving your son any vitamins or limiting food intakes or video play ect to have these results? Again this is wonderful news and gives us hope all our kids can beat the tics!!! Mary Link to comment Share on other sites More sharing options...
mommyof2 Posted August 3, 2009 Report Share Posted August 3, 2009 had to add...just checked out the link you did and to find a doctor near me. The one that came up, we had our son to in connection to our Cranial Sacral Therapy referred us to but it didn't help him at all....... Wish we would have been as lucky as you were. When we went to see him he didn't do any special tests on him, just adjusted his back and neck....nothing more than the chiropractic we are seeing now does....... Mary Link to comment Share on other sites More sharing options...
san70 Posted August 4, 2009 Report Share Posted August 4, 2009 That is great news! Has anyone else had any experiences with chiropractic neurologist? Link to comment Share on other sites More sharing options...
momof4boys Posted August 4, 2009 Author Report Share Posted August 4, 2009 Mary, sorry you didn't have success with the doctor that was referred to you. As far as my son's diet, we try very hard to limit artificial colors and preservatives. He is anaphalaxic for peanuts (level 6 on RAST scores) and has lower levels for other tree nuts (level 3 and below) Most of what we eat is organic (all meats, dairy, fruits and veggies) It has been harder for me to find snack food for his school lunches (many of the organic snack packs are still processed in plants that have peanuts, etc) but I do pretty well finding conventional snacks that don't have as much junk in it. I just tend to read labels and keep checking. lol. Takes me forever to grocery shop (and I have 4 boys so the cart is very full He is just on regular gummy vitamins (the ones with no preservatives or artificial colors, nut free facility, etc) He has also been tested forenvironment allergies and scores very high for dust mites and mold. We covered the beds with dust mite covers and I took out the stuffed animals, etc. I bought a floor steamer/sanitizer and try my best to keep up with the housekeeping. Before finding the new doctor, on the bad days I would also give him an epsom salt bath. We have learned that the Wii, computer and tv definitely aggrevate his tics. The chiropractic neurologist said to try to limit them and avoid getting the DS hand held games... and most importantly to not let him watch/play after dinner. He said to get good old fashioned games to keep his eyes focused without staring at tv screen. So we play with Hotwheels tracks, trains, board games, etc. Believe me, with 4 boys it gets crazy around here at night and sometimes the tv is the easiest... but we are trying hard to keep him calmer at night. One of the cool ideas the doctor said was for me to get a white board and have 4 different colored markers and write the alphabet scattered all over the board and have him locate the letter but say the COLOR instead. I guess since his major ticcing is the eye movement he wants him to focus on finding the letter but by making him say the color it cause him to have to think a bit harder rather than just rattling off the alphabet and his eyes focus for longer and stregthen whatever part of the brain is lacking. (like I said, I'd still new to all of this) Another game we play is staring at a fixed target (usually a lego guy) for 20 seconds. My sons eyes would have either a roll or a very obvious glance to the right so we had to keep his head still and make his eyes look to the left and hold it. It is funny to watch because his eyes at first literally would want to move to the right but he has greater control now... I am curious to see how he does in school with circle time. When he was re-evaluated for his IEP in May his eyes ticced/mouth grimmaced 73 times during the 10 minute circle time. Hoping all these exercises we are doing with his eyes will have a positive experience for him in school. Okay maybe I am rambling... Hope this helps! Link to comment Share on other sites More sharing options...
patty Posted August 4, 2009 Report Share Posted August 4, 2009 momof4boys, so happy that you have found a noninvasive modality that works for your son. it is great to hear about a treatment plan that stimulates one's own body toward healing. thx for sharing your experience and what is chiropractic neurologist. i am intrigued! i am buying the "disconnected kids" on amazon tonite. pat Link to comment Share on other sites More sharing options...
Chemar Posted August 4, 2009 Report Share Posted August 4, 2009 how good to see that chiropracty is being used this way! I had not heard of neurologists doing chiro before so that is interesting my son sees a NUCCA chiro and always has tic relief after adustment. his favorite combination is tohave a chiro visit and then go straight for acupuncture, which is still his #1 tic calmer glad it is working so well for your son Link to comment Share on other sites More sharing options...
mommyof2 Posted August 4, 2009 Report Share Posted August 4, 2009 Thanks and yes this helps.... appreciate all your answers. We too do the gummies with no art. colors or flavors and we try and watch what he eats, but like you said it is hard. He is a good, healthy eater but still likes his cheezits for snacks somedays. He has been using is psp alot more since school was out...not sure if that was a cause to things starting but it is so hard to get him to put it down... he will listen but I know how much he LOVES playing it and I hate taking so much from him. when school starts he will stop again...too busy with school, homework and just having time to play outside. mary Mary, sorry you didn't have success with the doctor that was referred to you. As far as my son's diet, we try very hard to limit artificial colors and preservatives. He is anaphalaxic for peanuts (level 6 on RAST scores) and has lower levels for other tree nuts (level 3 and below) Most of what we eat is organic (all meats, dairy, fruits and veggies) It has been harder for me to find snack food for his school lunches (many of the organic snack packs are still processed in plants that have peanuts, etc) but I do pretty well finding conventional snacks that don't have as much junk in it. I just tend to read labels and keep checking. lol. Takes me forever to grocery shop (and I have 4 boys so the cart is very full He is just on regular gummy vitamins (the ones with no preservatives or artificial colors, nut free facility, etc) He has also been tested forenvironment allergies and scores very high for dust mites and mold. We covered the beds with dust mite covers and I took out the stuffed animals, etc. I bought a floor steamer/sanitizer and try my best to keep up with the housekeeping. Before finding the new doctor, on the bad days I would also give him an epsom salt bath. We have learned that the Wii, computer and tv definitely aggrevate his tics. The chiropractic neurologist said to try to limit them and avoid getting the DS hand held games... and most importantly to not let him watch/play after dinner. He said to get good old fashioned games to keep his eyes focused without staring at tv screen. So we play with Hotwheels tracks, trains, board games, etc. Believe me, with 4 boys it gets crazy around here at night and sometimes the tv is the easiest... but we are trying hard to keep him calmer at night. One of the cool ideas the doctor said was for me to get a white board and have 4 different colored markers and write the alphabet scattered all over the board and have him locate the letter but say the COLOR instead. I guess since his major ticcing is the eye movement he wants him to focus on finding the letter but by making him say the color it cause him to have to think a bit harder rather than just rattling off the alphabet and his eyes focus for longer and stregthen whatever part of the brain is lacking. (like I said, I'd still new to all of this) Another game we play is staring at a fixed target (usually a lego guy) for 20 seconds. My sons eyes would have either a roll or a very obvious glance to the right so we had to keep his head still and make his eyes look to the left and hold it. It is funny to watch because his eyes at first literally would want to move to the right but he has greater control now... I am curious to see how he does in school with circle time. When he was re-evaluated for his IEP in May his eyes ticced/mouth grimmaced 73 times during the 10 minute circle time. Hoping all these exercises we are doing with his eyes will have a positive experience for him in school. Okay maybe I am rambling... Hope this helps! Link to comment Share on other sites More sharing options...
MARYANN Posted August 4, 2009 Report Share Posted August 4, 2009 Hi, My daughter does not have tics that you notice everyday I see them once in awhile but it's nice to know about this doctor. I live in close. When you state the below, was that at the doctors request or does he believe that food makes a diffenerce? We have learned a lot about his allergies and food sensitivities and have gone organic/green over the past 3 years but FINALLY a doctor has stepped up and is showing me HOW the brain works and WHAT can be done to help my son. I'm glad you found a doctor that can help. I will keep him in mind in case. My daughter tics occasionally but she has digestive problems which I think is connected. I would of definetly taken her to see this doctor a few years ago when she had back problems from ticcing. Link to comment Share on other sites More sharing options...
abbe Posted August 4, 2009 Report Share Posted August 4, 2009 Thanks for the info. I live in Mount Laurel NJ so that is not to far away if I ever need the help. I have 3 boys by the way!!! abbe Link to comment Share on other sites More sharing options...
faith Posted August 5, 2009 Report Share Posted August 5, 2009 momof4boys, does this chiropractic neurologist use chiropractic techniques as well? or just these type of brain excersizes you described? did he do any adjustments on your child? If so, what type? When you say he knows much about TS, do you mean he knows what causes it and what type of things can be used to treat it? or are you just referring to the syndrome in general? thanks Faith Link to comment Share on other sites More sharing options...
momof4boys Posted August 5, 2009 Author Report Share Posted August 5, 2009 This doctor understands how TS works with the brain. For example, with my son's eye tics, he knows the brain anatomy so well (from his neurologic background) he will say which part of the brain is misfiring based on the the ticcing my son is doing in front of him. He will double check it with the VNG camera. He will show me an exercise to do at home that will stimulate that part of the brain that needs to improve and we will work on that. Then he will recheck him with various tests at the next appointment to see if there are improvements. He is always checking to see if it is the right or left side that is lagging behind. For example, at today's appointment he had striped fabrics (red and white) and he would have my son follow them with his eyes and I can stand behind and watch if the eyes are moving together and staying fixed on the target or if his tic is forcing his eyes to the right. He had a blue target that he would move slowly to watch for controlled movements and we see what the eyes do as he moves it closer to his face. We didn't do any of the spinning exercises today but my son did get chiropractic adjustments at the end. I am fascinated by his approach because he believes the brain can heal itself with the proper stimulation but he focuses on the side of the brain that needs the extra help. My regular neurologist gives a clinical diagnosis but offers no explanation or ideas on what we can do to help my son. I am thankful to have found Dr. Kiechlin. I believe my son is showing such improvements because we are stimulating his brain on the side that is weak and in turn, the brain is working better and the communcation between the nerves on the right and left side are getting stronger and his tics are minimal. I hope I am doing okay trying to explain this. I just ordered "the idiot's guide to the brain" so I can try to educate myself on the different regions because I am really intrigued by all of this and I continue to ask him questions and he gives me stuff to look up online at home so I can keep learning, too. Please feel free to ask me more ~ I am excited to share my experience. Link to comment Share on other sites More sharing options...
momof4boys Posted August 5, 2009 Author Report Share Posted August 5, 2009 oops I forgot to add that this doctor also believes (as we all do) that it is best to keep the diet clean and free of artificial ingredients, etc. Kids with TS have such sensitive bodies anyway it is better to keep chemicals and potential allergens to a minimum. We were also talking about the dentist (I was sharing an experience with a great new dentist we are trying) and I told him that we were happy that they were not pushing fluoride treatments and left the decision up to me and he said that's definitely the way to go. I am heading to bed for tonight but will check back tomorrow to see if I need to give better detail to my responses. Good night Link to comment Share on other sites More sharing options...
faith Posted August 5, 2009 Report Share Posted August 5, 2009 Regarding the adjustments, were any x-rays taken of the spine or upper spine? or does he just do basic adjustments? Faith Link to comment Share on other sites More sharing options...
Chemar Posted August 5, 2009 Report Share Posted August 5, 2009 Faith as far as I know a chiro would never do adjustments without first taking xrays Link to comment Share on other sites More sharing options...
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