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