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momof4boys

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  1. Oops I just reread your original post and I assumed you were rolling UP but now I'm not sure. Try to determine which direction your are ticcing and then do the OPPOSITE for the exercises if you choose try that route. So if you are ticcing to the left, do everything to the RIGHT or vise versa. Good luck!
  2. My son's doctor has him do eye exercises which seem to help him. If you are ticcing/rolling UP, then you should try to strengthen the eyes by looking DOWN at a fixed target and try to hold them there for the count of 20. Go in the opposite way your are ticcing. For example, if you are sitting in a chair, place something on the floor by your feet and sit with your head straight and then *without* moving your head, force your eyes to look DOWN at the target. Repeat the exercise throughout the day but if you are getting fatigued, don't push it. Only do what you can without putting strain on your eyes. Another exercise we use at home is to write the alphabet on a white board with different colored markers and then he has to go thru the letters and say the corresponding color. Make sure to keep your head still so only your eyes are moving/tracking. Since you are in law school maybe you can figure out something more exciting to write on the white board other than the alphabet. My son is much younger so we use the alphabet. You can also do the spinning execises if you have a swivel chair. Spin yourself (not too fast, not too slow... just sort of a regular spin) for about 5 times with your eyes CLOSED. Open your eyes and look DOWN at a fixed target on the floor and count to 20. Since you are ticcing up you want to make the eyes go down so it will start to balance your eyes out again. If you have a friend who can help you they can hold a pencil (the eraser would be your target) about 2 or 3 feet in front of your face and have them move the eraser slowly in all sorts of directions, up, down, left, right, etc. At the end have them move the eraser close towards your nose so your eyes will follow it in until they are almost crossed. See if you are able to follow/track with this exercise and if your eyes move, put them right back on the target. This doctor also feels that putting different colored films on top of paper can help with reading. So if you can find something transparent (yellow, blue, green, red, etc) you could experiment to see if a particular shade helps with your eye tic. Maybe you could experiment with different highlighters if you are able to make marks in your law books. I do think eye drops could also help you (you could even do the plain saline "tears" if you don't think you're having allergies) Good luck and I hope you're able to have great success with your studies!!
  3. Hi again He didn't take xrays. I didn't think anything of it because we've had chiropractic care before (from just general chiropractors, this is our first exerience with a chiropractic neurologist) and some take x-rays or the thermal scan up the spine and some don't. We go again tomorrow and I will ask him why he didn't do xrays. The initial testing this doctor did was 2 hours so for me that was a lot of testing and interesting to watch. Each appointment after has been between 20-45 minutes depending on what he is doing and how many questions I am asking him. As far as the fluoride, I didn't mean to make a connection or a statement that using fluoride has a direct effect on TS. So sorry if that was confusing. From what I know and believe, anything extra (chemicals, additives, artificial coloring, etc) aggrevates my son's body and I am reluctant to add those to his body. We live in NJ and have the stupid state mandated flu vaccines and luckily my son just missed the cut-off date by 2 days last year. Whew! My other son who is 3 will be starting preschool this year... BTW my boys are 6, 5, 3 and 1. We actually have August/September birthdays for the first two so they will be turning 7 and 6 very soon. My 2nd oldest is the one with TS. So far I haven't noticed anything with the other boys but I am always on the look out. Hope you all have a great afternoon! Jody
  4. 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
  5. 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.
  6. 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!
  7. 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!!!
  8. Has anyone used a chiropractor neurologist to help relieve TS? My son used to go to a general chiropractor and although I know it improved his spine alignment it didn't show much improvement for his tics. A friend referred me to a chiropractor neurologist and I am going to call their office to get more information and find out about the cost, etc. (they don't participate with insurance) Anyone have anything to share with me that would help me make up my mind? Thanks so much!
  9. Thank you Michele and San for your feedback! I feel so much better reading your opinions because you have already gone thru the kindergarten years... I will talk to my son's case manager tomorrow and ask some more questions. The impression I got from the principal today was that they need to know ahead of time about the aide because if it is something that will be included in the IEP, they will have to hire somebody to start for the new school year. I guess that means that if he's doing poorly there is less of a chance of having an aide added a few months into the school year by revising his IEP? Hopefully he won't stand out too much since there will be other kids who need fine motor help in the early years. His TS is pretty bad when he is sitting still (listening to stories at circle time, watching a video, looking at the board, etc) but when he is engaged in an activity it pretty much disappears. My case manager said I can work with the OT and figure out "fidgets" that may help him to keep his focus when he is having difficulties... boy the transition to kindergarten is giving me some stress. I'm sure there'll be lots of vocal tics during rest time (and maybe during library time?!) Hopefully the team at the new school will be as supportive as his preschool teacher!
  10. My son is transitioning into kindergarten in the fall and I just had his re-evaluation meeting for his IEP. He is now officially classified as "other health impaired" because of his Tourettes. (in preschool, it is a generic classification of "preschool disabled" and now he is moving onto the elementary school. We live in NJ) He will also be receiving speech therapy and OT in kindergarten. I am trying to make sure his transition is smooth and had a meeting with the Principal at his new school today to explain a bit about him and his Tourettes and some of his other medical conditions (severe allergies, anxiety, mastocytomas, etc) The draft copy of the IEP does not mention an aide since he will be in a general education class. They want him main streamed. His case manager seems to think he will be fine without an aide in the class but when he is having really difficult time with his TS I don't know if a general ed teacher will be able to keep an extra eye on him as well as the other kids in the class? I need to sign the IEP final copy within another week... can anyone please help me by giving me your experience/opinions? Please??? Do your children with TS usually have an aide in the class? His fine motor delay is also what is worrying me but they say that OT once a week should be enough... but if he is having lots of tics it drains him of so much energy he just doesn't want to work on the writing/coloring. What's a mom to do?! Thanks so much for taking the time to read this!
  11. I'm unable to make the conference. Does anyone know if the information will be video taped? I'm in NJ and have 4 small boys and it's too far (and expensive) for me to travel over the holiday weekend in May.
  12. Hi! WOW ~ when I read your post I see exactly what my son is going thru (except he is much younger... will turn 5 in September) He started at age 3 with the eye rolling and slight mouth grimace... went on to cough tics, sniffling tics, etc. They would wax and wane depending on his daily activities or if he had a head cold, virus, etc. In June we saw a horrible head bob that would really interfere with his ability to sit and watch a movie, speak clearly, etc. It was really scary for us and we changed pediatricians and had a whole bunch of bloodwork ordered. I was sure something would turn up positive but everything was normal and within the proper limits. (he is just a really fatigued kid who frequently looks ill, although the bloodwork indicates that everything inside is healthy.) I actually just got a copy of the bloodwork for my own files. Here are the tests that were ordered: CBC with differential/platelet, Lyme Western Blot Serum, Comp Metabolic Panel (14), Immunoglobulins A/E/G/M, Serum Tryptase, Antinuclear Antibodies Direct, t-Transglutaminase (tTG), IgG, Uric Acid Serum, Phosphorus serum, Magnesium Serum, Antistreptolysin O Ab, C-Reactive Protein My son also has severe food allergies (anaphalaxis for peanuts and brazil nuts, lower levels for other nuts... diagnosed thru RAST testing) He seems to have chemical sensitivities so we cut out artificial ingredients and stuff like high fructose corn syrup, preservatives, etc, about 2 years ago and live more of an organic lifestyle here... still kind of hard to avoid questionable ingredients with summer picnics and birthday parties at other children's houses, though. Ugh! We also just had an environmental skin prick test done at the allergist and he scored high for dogs, mold, dust mites, etc. The allergist said sometimes children with lots of allergies are more proned to tics so she put him on a nose spray, xyzal, and eye drops to try out for a month. Surprisingly, he is much better and the head bobbing has almost completely stopped now that we have been on allergy meds for 2 weeks. I am shocked and very happy for him. (and ready to rip out the carpets and get a leather couch. lol) Being more of an organic mom, I tried homeopathic allergy remedies that haven't seemed to work and was leary to try the prescription stuff but it seems to be working great for him and he is doing much better. Anyway, I hope you can find some answers for your son. We have an appointment with his pediatric neurologist on August 11th so hopefully he will give us more information. My son hasn't gotten a tourettes diagnosis yet but I think the transient tic disorder has now moved to a chronic tic disorder? I am wondering how much of this is allergy related since things seem to be improving now that the allergist gave us stuff for environmental allergies... we'll just have to wait and see. I think we will face more challenges with our son as he gets older... he is very far behind with fine motor skills and seems to have anxiety issues. He is in a special preschool program that gives him OT/PT and he will hopefully be picked up for speech this year, too. This is such a great site and you'll find lots of comfort reading what the other moms have done for their kids. I love reading thru the threads and have learned so much already and feel good that we all understand and support each other. Keep us posted! ((((((hugs)))))) We want to hear how your son is doing!
  13. As far as blood test, OMG we did a whole bunch. Our pediatrician was wonderful. I posted a thread about 2 weeks ago asking what type of bloodwork to run and some of the moms gave me good ideas. They took 5 viles and honestly, I can't even rememer what half of them were. Of course there was the cbc/diff and metabolic panels. They did the strep test for PANDAS. He ran the lyme and EBV test. Something called an ASO? My son also has mastocytomas on his skin (mast cells) and they are checking for mastocytosis in the blood... I think the test was serum tryptase. I should get the full report tomorrow and I always request copies for my personal file at home so I'll be able to read thru them and post more of the tests if anyone wants to know. We are scheduled for an MRI on August 5th and then another visit to the neurologist on August 11th. ~Jody~ BTW my boys are: Danny (almost 6) Kenny (almost 5) the kid with tics Johnny (2 1/2) Tommy (10 weeks)
  14. ((((((Jeanne)))))) I'm brand new here...I'm a mom of 4 boys and I can totally relate to how your anxiety kicks in when you watch your son with his eye tic. I am going thru the same thing with my almost 5 year old. We're awaiting blood results which should be available tomorrow. Hang in there. I have found a lot of great ideas and encouragement reading thru the different threads. It is so hard to watch our kids go thru this when we can't make it stop for them. Keep us posted and let us know how he is doing!!!
  15. Hi! I am brand new to this forum and am excited to learn more about tics and tourettes. Quick history here, my second oldest boy (he will be 5 in September) has struggled with a transient tic disorder and it is getting worse and I am suspecting a diagnosis of tourettes. The pediatric neurologist can't see him until August 1st but my son is struggling greatly and looks terrible. He is in a special preschool program because he has fine and gross motor delays and he has a long list of allergies, both food and seasonal. He is the sweetest little boy but just seems to have so many mysteries surrounding his health. We will be going next week for more bloodwork and besides the cbc/diff panel, we are asking for lyme, mono... and I really need suggestions from the seasoned parents as to what else to request that might show up considering he has the tic disorder. (he currently has an eye roll, head bob and something strange he does with his throat/tongue) Please give me some ideas as to what else we can request for the bloodwork (is there a test that shows magnesium levels?) Getting bloodwork done is very difficuilt because he HATES it and I want to be sure we have ordered the right tests so we don't have to go back and do it again! I look forward to hearing from anyone who can post and I am really enjoying reading the different topics and don't feel so alone anymore. We all have such special kids and I'm glad to find the support here! Thanks! ~ Jody
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