littleDaniel

How much B6 did you give him daily to get rid of the eye tics?

Hi Marie and welcome to this forum. Sorry I didn't reply sooner. I seem to have been so obsessed with this that I have gone a few days without following up. I have been on this forum for about a month now. The ideas that are presented and offered are very helpful yet overwhelming because of so many varying possibilities. My immediate impulse after seeing my son tic was to take him to a doctor who of course just said it was TS and he would have to live with it. The neurologist we saw said the same thing. He even went on to say that PANDAS was for quacks. Not that I believe my son has PANDAS but it is sad that some doctors are so closed minded. However, I have since convinced my doctor to provide more tests that people have suggested on this forum. The least these tests could do is rule things out. We had three different strep throat tests done (quick culture, 72 hour culture, and the ASO titers - blood test). We have had the standard allergy test (tests for about 20 most common allergies), tested for Celiac and Mercury and tested for magnesium levels. We are trying to get them to test for Dysbiosis but haven't convinced the doctor that it is warranted. We are also scheduled for an EEG this Saturday with a biofeedback session next week. The only thing that has come up positive was an allergy to Dust Mite which is at 3 (levels of 1-5, 5 being the highest). The doctor believes a 3 is pretty high. I performed a "Field Day" on his room to remove all dust and purchased a 99.97% air filter for his room. I also purchased a special allergy cover for his pillow cases and mattress. He does appear to be sleeping a lot better overall since these dust proof additions. However, he does still have some bad days. We have purchased melatonin as a natural supplement for him to sleep when he has bad days. We haven't tested it yet. Magnesium levels in his blood were normal but I had already started him on a high magnesium diet prior to the blood test so he might have been low initially. I've had him on a high spinach, halibut, beans, and just started giving him sunflower seed snacks. My LD had a major hyperactivity component to his TS and magnesium appears to have reduced it significantly. He is much more calm since increasing Magnesium which in turn can help reduce anxieties. Anxiety is big trigger for my LD. He still triggers high with TV even though I changed to an LCD screen. I minimize his TV time because of it. However I dont' want to completely remove everything he enjoys in life. He is still just a kid. I have't allowed him to play with his video games since the onset of Tics. I expect to allow him sometime in the near future but more controlled than before. One of my biggest obstacle is not being able to get doctors to due specific tests due to not believing in anything. Also, unforturnately my wife and I are at odds with this whole thing. She just follows the TSA and the MDs who say that it is genetic and you have to live with it. My son says there is nothing wrong with him. I can't find myself telling him he has TS although I might eventually have to do it. I really want him to be a normal child with a normal childhood. He is also very emotional and occassionally lacks confidence. I am planning on also trying Omega 3. I have read that it has reduced tics in some. I have even read that the TSA (Tourette Syndrome Association) has started some research on Omega 3. Other than the above, like yourself I am still hoping to find the "smoking gun" to help our son. I guess my overall current synopsis is test as much as I can (to try to find a possible cause), reduce the environmental conditions that can worsten it (reduce TV, video games, dust mites, etc.), and improve his diet to strengthen his immune system or supplement any diet difficiencies. I am currently also reading the Sheilla Rogers book which summarizes a lot of what you will read in this forum. Good luck and take care.

My LD has a very hard time falling asleep. He has darkness phobias and a constant feeling of the need to go to the bathroom (phobia of going on himself while sleeping). I could start putting him to bed at 6:30 but he won't actually fall asleep until 9:30. Our doctor recommended melatonin? Anyone have any experience with it? Could it help or worsten the tics?

Both 72 hour cultures (our son with the tics and his sister ) came back negative. Perhaps this is not PANDAS but TS(the neurologist initial diagnosis) One thing we have realized is that although these major tics just started about 5-6 weeks ago, he really had different forms of tics in the past two years. We remember him having a 3 month period of clearing his throat last year. We also remember him snorting for about three months 2 years ago. We thought he either had allergies or a cold. Two days ago he started a new tic with his lips rubbing against each other making a sound (kind of like a rasberry). Broke my heart, because now it definitely fills the description of TS (motor and vocal). He also now has a fear of baseballs hitting him. Because of this we have decided to take him out of little league. We could see an increase of tics while in the outfield or when coming to bat. Does anyone know of a naturapathic or environmental doctor in Southern California?? We live in Orange County California. Thank you everyone for your support. Our pediatrician has suggested melatonin for sleep....Does anyone have any experience with that? Could it make things worst or better? tx LD

LD is always the loudest talker in any room.

Both 72 hour cultures (our son with the tics and his sister ) came back negative. Perhaps this is not PANDAS but TS(the neurologist initial diagnosis) One thing we have realized is that although these major tics just started about 5-6 weeks ago, he really had different forms of tics in the past two years. We remember him having a 3 month period of clearing his throat last year. We also remember him snorting for about three months 2 years ago. We thought he either had allergies or a cold. Two days ago he started a new tic with his lips rubbing against each other making a sound (kind of like a rasberry). Broke my heart, because now it definitely fills the description of TS (motor and vocal). He also now has a fear of baseballs hitting him. Because of this we have decided to take him out of little league. We could see an increase of tics while in the outfield or when coming to bat. Does anyone know of a naturapathic or environmental doctor in Southern California?? We live in Orange County California. Thank you everyone for your support.

Has anyone looked into the claims for curing tics by the following website www.facialtics.org.url? They are offering to sell a book with the answers.

Hi Dedee, We are taking little Daniel and his younger sister in today and request a throat culture for strep. Hopefully, the doctor's ablige to our request. Thank you for the recommedations and comments. Many of Daniel's actions fall into the Pandas description so we would like to find out if he is or isn't.

He appears to have body tics at night just before sleeping....I read someone mention bladder tics. He also has had a major need to go every night for a long time. Could these be related? Is it a bladder tic? Is a bladder tic common with TS or Pandas? tx

We saw the primary care doctor's referred Neurologist yesterday who has told us he doesn't believe Pandas exists ...he says it is for quacks... This is very frustrating... However, we did convince him to schedule an EEG.

The ASO Titers test came in extremely low (per the doc)...no sign whatsoever of strep. Magnesium levels were normal and no additional allergies (other than dust mites) for this standard allergy test.

Hi All! We just discovered that our son is allergic to dust mites.....Has anyone else had this and could this be the cause of his tics?? thank you, LD

Thank you for all the info...I will definitely keep this in mind during our search for answers. D

Thank you for your very kind words!!! We were thinking of pulling him out of baseball because all of this is so overwhelming for me and my wife, but after reading your words...we will merely reduce his baseball practice and allow him to do what he enjoys. Thanks again, D

Have you seen any improvement with the B6 and magnesium? Have the tics gone away or diminished? How long has your child had these tics? My son also has a lot of OCD type behavior...he can't stay still for a minute. Where can I find a naturapathic doctor and are they expensive? thanks again, D

Thanks, We are getting the ASO Titers blood test...still waiting for the result. Is the culture more accurate than the blood test? We'll also see if we can get the others tested....sometimes the doctors don't want to test on parents investigative work. Is your daughter OK now?? Thanks again.

Hi Kim, He has always had phobias but they have been increasing as he's become older. He had a sore throat in the summer but the doctor's did a throat culture and dismissed the strep possibility. My daughter did have strep throat in the summer. One of the blood tests that will be done is suppose to reveal if he does have strep. We'll find out shortly. Could he have PANDAS even if the blood test returns negative???? Thank you for your suggestion on the Pandas fingers test. I'll be sure to try it out today when I get home. Thank you again for the quick reply!

I am new to this Forum and just registed today. My son's name is Daniel and he just turned 8 years old 1 month ago. Approximately two weeks ago, a blinking eye and rolling eye tic emerged. Now its become a blinking eyes with a head jerk and he's moving his hands a lot. The rolling eye re-emerges with reading. His tics become more frequent with frustration, anxiety, stress, being tired and he has become extremely photosensitive. He cannot watch tv or go to the movies...the tics become extreme. Also video games make it worst. I took him to the doctor who says it is just transient tics and they should pass in a month. I have trouble believing her. A few other notes: he has many phobias; fear of darkness, spiders, being alone, failure, peeing on himself (so tries to go 3 to 4 times a night even though nothing comes out). He also has trouble sleeping (insomnia) and sleeps about 8 to 8.5 hours a night. I don't think that is enough for a child his age?? Just prior to the tics, he was blinking and rubbing his eyes a lot. He told me yesterday that he blinks because he feels something hard and dry behind one of his eyes. He also said that he jerks his head when he swallows. Because we felt that stress appears to be one of the things making the tics occur, we just switched schools to an all English school. He was previously going to an Immersion program (English and Spanish). It appeared to us that the program was too stressful and difficult (because of his tic and his reaction to homework) so we feel this should eventually reduce the stress. Daniel is very active: he plays piano, takes martial arts, and just started little league (per his request). He loves soccer too. A few other things to mention: we just installed a new tile floor..not sure what that would do; he just started baseball and baseball practice in a baseball field; his diet hasn’t been great during the summer (lots of junk food); he just started school; we stopped giving regular multivitamins (because we were too busy); However, the tic is alienating him from other kids and it breaks our heart that he is getting a complex (hiding his face with his hand). We called the doctor again today and requested some blood and urine analysis to try to rule things out. Initially the blood work with be tested for basic allergies (milk, wheat, dust, pollen, etc.), potential lingering strep, and magnesium. Because of this forum, we have elected to try a few things…we have increased his magnesium intake solely through diet (with spinach & halibut), and we are trying to wean him off of dairy products, reduce sugar (no candy) and remove all foods with artificial coloring or flavors. We started this in the last 2-4 days. My wife and I are heartbroken by what we are seeing and are praying and hoping that this does just pass or we find a solution. I signed up with this forum in hope of finding an answer to his condition and guidance to get there. Please help!!!