lele Posted September 7, 2009 Author Report Share Posted September 7, 2009 {{{{{{{{{{{{{hugs}}}}}}}}}}}}}} to you lele! (or is lele your son's name?) Anyhow...... I was in the same position as you (very similar) ........my son is now 24 yo and doing fine "latitudes" was a newsletter then.....and it helped me alot! I dont have alot of time to write today, but want to send you hugs and support! This was my experience as well: I have a seven year old boy with similar tics. He does a no dye,dairy,gluten,msg and perservative free diet. He doesn't eat high frutose syrup for the most part. I have him on supplements and probiotics daily. He does cognitive behavior therapy. He is 95%better. e.g...what I found most useful was not so much what we ADDED (e.g. nutritional supplements, etc) but what we ELIMINATED: food allergans...ESP corn . (corn is in EVERYTHING as "corn fructose" , "high fructose"....and tons of other names.) I took him to a chiropractor who did APPLIED KINESEOLOGY muscle testing for food allergies. That identifed foods that were a problem....then we elimated those. YES....it is DIFFICULT. I had to drive into the next county (back then) to find "health foods" that didnt have things like corn sweeteners/wheat etc. HOWEVER.....when we DID close to 100 % eliminate these allergans.....his MOTOR tics were virtually eliminated as well! His VOCAL tics, however, manifested as stuttering...and was not as easily treated. Avoiding all the foods was SOOOO difficult, we eventually (age 9) resorted to catapres (clonidine)....it DID eliminate the motor tics similar to the food elimination. (I'm not sure why your MD doesnt want to treat it?....have you consulted a neurologist?) Catapres has minimal side effects...mostly sleepiness....so we gave at bedtime. Regarding the stuttering/vocal tics.....a few years later (age ? 11) I learned that not all speech therapists have "dysfluency" training......and took him to one that did.....and in less than a year...he was no longer stuttering. The neurologist told us that he might "outgrow" the tourettes in adolescence......and....he did! We stopped the catapres at about age 14....and he's been fine since! He is a wonderful boy/young man......and yours is as well! When I signed in today, I said other members could contact me through email....so I'm assuming there is a way you can contact me through that if you want... {{{{{{{{{{{{more hugs}}}}}}}}}}}} and best wishes! THINGS WILL WORK OUT (ps: FWIW: most ham has corn products in it) Laurena82 Thanks for the encouragement. Good to hear the good news of your son, that is my hope. Now i am suffering from my Lele's vocal tics coming back, and get worse. so hopeless Link to comment Share on other sites More sharing options...
lele Posted September 7, 2009 Author Report Share Posted September 7, 2009 can't tell the reason, my son is suddenly really bad there days, bad vocal tics plus facial tics, anyone knows how to control this ? any information will be helpful. Thanks a million ! Link to comment Share on other sites More sharing options...
mommyof2 Posted September 7, 2009 Report Share Posted September 7, 2009 I wanted to thank you for your encouraging words... It is wonderful to hear success stories. We pray each day that our son too will outgrow this. Some tics have been in my husbands side of the family, nothing as extreme as our son and they have outgrown them. My side has what I now see as tics and some still have slight ones that I notice because I deal with this all,but to others it is just them..... it is nothing overly extreme. We did resort to topamax and as of now am happy with it. We had a set back this summer, not sure if it was due to using generic or not but now they are better again. He was making a vocal this summer as he did last summer also, but that too has calmed down, still alittle but not as bad as before, didn't change anything so not sure what it was. Again,thank you for taking the time to let us know of your success!!! Mary {{{{{{{{{{{{{hugs}}}}}}}}}}}}}} to you lele! (or is lele your son's name?) Anyhow...... I was in the same position as you (very similar) ........my son is now 24 yo and doing fine "latitudes" was a newsletter then.....and it helped me alot! I dont have alot of time to write today, but want to send you hugs and support! This was my experience as well: I have a seven year old boy with similar tics. He does a no dye,dairy,gluten,msg and perservative free diet. He doesn't eat high frutose syrup for the most part. I have him on supplements and probiotics daily. He does cognitive behavior therapy. He is 95%better. e.g...what I found most useful was not so much what we ADDED (e.g. nutritional supplements, etc) but what we ELIMINATED: food allergans...ESP corn . (corn is in EVERYTHING as "corn fructose" , "high fructose"....and tons of other names.) I took him to a chiropractor who did APPLIED KINESEOLOGY muscle testing for food allergies. That identifed foods that were a problem....then we elimated those. YES....it is DIFFICULT. I had to drive into the next county (back then) to find "health foods" that didnt have things like corn sweeteners/wheat etc. HOWEVER.....when we DID close to 100 % eliminate these allergans.....his MOTOR tics were virtually eliminated as well! His VOCAL tics, however, manifested as stuttering...and was not as easily treated. Avoiding all the foods was SOOOO difficult, we eventually (age 9) resorted to catapres (clonidine)....it DID eliminate the motor tics similar to the food elimination. (I'm not sure why your MD doesnt want to treat it?....have you consulted a neurologist?) Catapres has minimal side effects...mostly sleepiness....so we gave at bedtime. Regarding the stuttering/vocal tics.....a few years later (age ? 11) I learned that not all speech therapists have "dysfluency" training......and took him to one that did.....and in less than a year...he was no longer stuttering. The neurologist told us that he might "outgrow" the tourettes in adolescence......and....he did! We stopped the catapres at about age 14....and he's been fine since! He is a wonderful boy/young man......and yours is as well! When I signed in today, I said other members could contact me through email....so I'm assuming there is a way you can contact me through that if you want... {{{{{{{{{{{{more hugs}}}}}}}}}}}} and best wishes! THINGS WILL WORK OUT (ps: FWIW: most ham has corn products in it) Link to comment Share on other sites More sharing options...
laurena82 Posted September 7, 2009 Report Share Posted September 7, 2009 can't tell the reason, my son is suddenly really bad there days, bad vocal tics plus facial tics, anyone knows how to control this ? any information will be helpful. Thanks a million !FWIW,... IN retrospect, yes, my son's tics were worse at begining of school years usually.....(and definitely always worse at end of school day as opposed to prior to start of school day)... My son's motor tics were definitely influenced by allergies (primarily food allergies)....but environmental allergies can/did play a role as well. This time of year is especially bad for folks with pollen/ragweed/whatever allergies....quite possibly has something to do with worsening right now. Also, stress does play a role as well, I'm sure you've noticed. So , between fall pollen etc allergies and "stress" of new school year....there's a bit of an explanation right there. sigh....BEST WISHES.... (we need a "hug" icon ! ) PS: We did resort to topamax and as of now am happy with it. This wasnt on the market (that I"m aware of) when my son was that age....I just googled it....looks relatively begign, as far as pharmaceuticals goes.... what always concerned me were the ones that had TARDIVE DYSKINESIAS as "side effects"......because those can be "permanent"....e.g, even after going OFF of the meds....the tongue/mouth movements continue......it doesnt look like Topomax has that as a side effect... Some tics have been in my husbands side of the family, nothing as extreme as our son and they have outgrown them. My side has what I now see as tics and some still have slight ones that I notice because I deal with this all,but to others it is just them..... it is nothing overly extreme. Ditto here,...although it was MY side...my dad and brother have always had some throat clearing type of stuff...always attributed to "allergies'...... but, as you say...nothing "extreme"....but once you become aware of tics....you notice it actually IS that , not simply throat clearing/etc stuff.... interesting.... Link to comment Share on other sites More sharing options...
lele Posted September 20, 2009 Author Report Share Posted September 20, 2009 leleTS is classified a disability and so BY LAW no school can punish or deny education to a child with TS because of their TS symptoms here is information about it http://www.tsa-usa.org/educ_advoc/education_main.htm Thanks for giving me such a helpful information, Chemar, do I need to file a special education plan for my son if he is getting worse? can't home school him since English is not my mother language, by the way, by any chance you know anyone has TS child in Virginia? I really need some help What a bad day! My sons tic moved to arm and shoulder, so bad, is he getting worse? Link to comment Share on other sites More sharing options...
Chemar Posted September 20, 2009 Report Share Posted September 20, 2009 Hi Lele tourette tics do come and go and move around and change. it is part of the waxing and waning characteristic of the disorder. "worse" is usually defined as when the tics become injurious or when they impact the person's life negatively so that normal functioning is impaired in terms of the educational aspects, yes, you need to see the special ed administraotr at his school and arrange a 504 plan for him, which the law allows. The school HAS TO provide accommodations for him under the IDEA Act. If you need an advocate to help you implement this, contact the TSA. Their contact info is on their website http://www.tsa-usa.org Link to comment Share on other sites More sharing options...
faith Posted September 20, 2009 Report Share Posted September 20, 2009 lele, no, I don't think he is getting worse, but the tics may change here and there. Did the other tic stop and now he does this one, or is it the other PLUS this? I noticed my son doing other tics here and there but they are usually short lived. I feel he has vocal as his main tic, and the others are head/neck related. I've seen other things here and there but they seem minor compared and again, short lived or once in a while. Faith Link to comment Share on other sites More sharing options...
lele Posted September 20, 2009 Author Report Share Posted September 20, 2009 lele,no, I don't think he is getting worse, but the tics may change here and there. Did the other tic stop and now he does this one, or is it the other PLUS this? I noticed my son doing other tics here and there but they are usually short lived. I feel he has vocal as his main tic, and the others are head/neck related. I've seen other things here and there but they seem minor compared and again, short lived or once in a while. Faith Thanks all for helping me! Some of his facial tics get much better, but the neck jerky and clearing thrat, the first sign of his TS are still here. Link to comment Share on other sites More sharing options...
giulia Posted November 2, 2009 Report Share Posted November 2, 2009 HI I AM ACTUALLY IN VA. WHERE ARE YOU LOCATED? I am also from another country (Italy). My son has been doing GREAT after we figured out he had 11 food and chemical sensitivities. After removing the offending items he is almosto tic free, so I definitely recommend this. He is also on MAGNESIUM (citrate) and fish oil. i will soon add B6. I live in SALEM, VA (roanoke area). I am new to the board but willing to help if you need anything. Take care! Giulia Link to comment Share on other sites More sharing options...
momofgirls Posted November 2, 2009 Report Share Posted November 2, 2009 Just want to add that not all PANDAS kids have high strep titers. All strep tests for my daughter were negative! She has been on antibiotics for 6 wks and is almost completely symptom free. There is not one diagnostic test for PANDAS. You can contact pandasnetwork or dr kovacevic in chicago. He answers emails. Dr madeleine cunningham at oklahoma univ is doing a study and may be very helpful as well. Don't give up. Leave no stone unturned. Good luck. My son is 7 years old, and looks like he has TS, mom is crashed. He started moving his neck, rolling his eye ball and clearing his throat from May, the children neurologist said it is TS and we don't want to use medicine now, is there anyone knows how to release this by the natural products? please help me, thanks in advance. By the way, we want to start the L-Carnitine, anyone can give me some suggestion on the dosage? Thanks a million! Link to comment Share on other sites More sharing options...
lele Posted November 5, 2009 Author Report Share Posted November 5, 2009 Just want to add that not all PANDAS kids have high strep titers. All strep tests for my daughter were negative! She has been on antibiotics for 6 wks and is almost completely symptom free. There is not one diagnostic test for PANDAS. You can contact pandasnetwork or dr kovacevic in chicago. He answers emails. Dr madeleine cunningham at oklahoma univ is doing a study and may be very helpful as well. Don't give up. Leave no stone unturned. Good luck. My son is 7 years old, and looks like he has TS, mom is crashed. He started moving his neck, rolling his eye ball and clearing his throat from May, the children neurologist said it is TS and we don't want to use medicine now, is there anyone knows how to release this by the natural products? please help me, thanks in advance. By the way, we want to start the L-Carnitine, anyone can give me some suggestion on the dosage? Thanks a million! That is what I am crying for ! My son has all negtive results from Strep blood tests and 72 hours culture, that means he has no strep problem, my heart was broken again since this is the easiest way to treat and heal TS. He has no OCD, no any behavior problem shown up, can we ruin out PANDAS? My son is suddenly get worse recently, he has 6 motal tics and vocal tics come together, that uncontroller tics happened once in every 2-3 seconds, but i can't do anything to help him, so sad about that. Anyway, thanks for giving us such wonderful information, momofgirls Link to comment Share on other sites More sharing options...
lele Posted November 5, 2009 Author Report Share Posted November 5, 2009 HI I AM ACTUALLY IN VA. WHERE ARE YOU LOCATED? I am also from another country (Italy). My son has been doing GREAT after we figured out he had 11 food and chemical sensitivities. After removing the offending items he is almosto tic free, so I definitely recommend this. He is also on MAGNESIUM (citrate) and fish oil. i will soon add B6. I live in SALEM, VA (roanoke area). I am new to the board but willing to help if you need anything.Take care! Giulia Giulia , i am so glad to hear that, congratulations! We live in Richmond, maybe we are not too far away from each other. We tried MAGNESIUM (citrate), B6, but none of them works, doing the sensitivities test will be our next step Link to comment Share on other sites More sharing options...
lele Posted November 5, 2009 Author Report Share Posted November 5, 2009 Got the strep test today , eveything is negtive! This is the only time I hate to get negtive result! My son recently has several symptoms, vocal and fical tics together, neck jerking, lifting arms, rolling the eyes, lifting eyebrows, wrinkle nose, but i can't do anything to help him except worry and worry. Link to comment Share on other sites More sharing options...
Char Posted November 5, 2009 Report Share Posted November 5, 2009 Got the strep test today , eveything is negtive! This is the only time I hate to get negtive result! My son recently has several symptoms, vocal and fical tics together, neck jerking, lifting arms, rolling the eyes, lifting eyebrows, wrinkle nose, but i can't do anything to help him except worry and worry. Just wanted to let you know your not alone. I am going through a similar situation right now. If you want to chat PM me. Char.. Link to comment Share on other sites More sharing options...
lele Posted November 9, 2009 Author Report Share Posted November 9, 2009 leleTS is classified a disability and so BY LAW no school can punish or deny education to a child with TS because of their TS symptoms here is information about it http://www.tsa-usa.org/educ_advoc/education_main.htm Thanks for giving me such a helpful information, Chemar, do I need to file a special education plan for my son if he is getting worse? can't home school him since English is not my mother language, by the way, by any chance you know anyone has TS child in Virginia? I really need some help My son has frequent wetting bed recently, it never happened before, is this one of the bad part from TS? My heart is still painful Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now