kimwal

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate. Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate. Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate. Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate. Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

Hello. I have not been on here in a very long time. I read your post. Sounds very familiar. My son is 18 yrs old, with TS, OCD, and ADHD. He just graduated from HS I am so VERY proud to say. Has the road been easy! No. But well worth everything to have seen him graduate. Your son sounds like mine was at that age. VERy,, very hyper. The hyper/impulsiveness, sounds like the ADHD, the rages, tantrums could easily be OCD. My son had a routine, when that routine was interupted all ###### would break loose. his OCD would cause him to not be able to adjust to changes well at all. Vacations were torture for us. Bipolar seems to be the new dx right now. One doctor we saw tried to dx my son with it. We even put him on lithium hoping for some positive change. Nothing. I then flew my son to Baylor Univ. in Texas. Best thing we ever did. They have a movement disoder clinic there. Best neuro. EVER!!! He said son did not have bipolar. My suggestion. take your son to get a full evalution. Get correct diagnosis. I dont want to sound negative, but I did every single diet, nutritional supplements, vitamin shakes, IVIG, chelation therapy, steriods for possible PANDAS. Nothing significant changed, Spend thousands of dollars trying to help him thru diet, natural ways. Im not say dont try those things. Just do your research. I saw where you were in Atanta. We live about 2 hrs from there in auburn, ala. What docotors did you see there?? There is a good neuro in Atlanta at emory. If you want to contact me, to discuss doc. or if you have any questions I will be glad to do what I can. Been there done that kind of thing. my email is kimwal07@gmail.com, or on FB Kim Corley Walters. those will be a better way to get in touch. Good luck!

Google Movement Disorders Clinics in NY. I did and several came up but wasnt sure which was closest to you. Some may come up under Parkinsons and Movement Disorder Clinic. they treat parkinsons and TS. We go to something simiiar in Atanta, Ga. and have seen a doc in Tx . They are the best. I prefer seeing neurologist than psy. And thats what u would probably see. These clinics specialize in Ts. I have heard of a great doc. name in NY but cannot remember his name( sorry) but google and see wht u find! good luck!

Nancy, just read all of the post u had. We did try all the allergy things, removal of foods, milk, dairy, wheat, sugar, you name it we did it. Bought all the nutritional shakes that were supposed to 'help", Removal of things with chemicals in the home, candles, detergents, but in the end and THOUSANDS of dollars later it did not work for my son. Would I do it again,, yes. Because The ones tht I see on here that it has helped, I would never tell anyone not to in case their child fell into the ones that it did work for. However, you do have to be very careful. All doctors always say milk, dairy out of the diet first. Always. Learn as much as you can about this. We did so many nutritional supplements that my child was taking so many pills a day from this. Also, I think we must consider our childrens quality of life. We had to go back to reg. meds but my son and I were spinning our wheels trying to go the other route. And it was starting to damage his self-esteem which can be hard to get back. Be open about it all-both ways, natural or traditional. )

Hi , my name is Kim. I saw you post about others living in Atlanta tht have children with TS. I do not live in Atlanta but we see a doctor that lives there. His name is Dr. Jorge Juncos and he is at Emory. He is over the Parkinson and Movement disorders( ts). We live in Auburn, ALa, (abt 2 hrs away). My son is 17. was dx at age 5. We have seen MANY doctors. psy. you name it. My favorite neurologist is in Texas at Baylor. We were flying out to see him a couple of times a year for him to treat our son since his TS is so bad. He is a world renown neuro. But it got way too expensive as we were needing to go more than 2x a year. Anyway. If you have any questions I feel your pain for you and your child. I hope he is doing better! Kim

Hi , my name is Kim. I saw you post about others living in Atlanta tht have children with TS. I do not live in Atlanta but we see a doctor that lives there. His name is Dr. Jorge Juncos and he is at Emory. He is over the Parkinson and Movement disorders( ts). We live in Auburn, ALa, (abt 2 hrs away). My son is 17. was dx at age 5. We have seen MANY doctors. psy. you name it. My favorite neurologist is in Texas at Baylor. We were flying out to see him a couple of times a year for him to treat our son since his TS is so bad. He is a world renown neuro. But it got way too expensive as we were needing to go more than 2x a year. Anyway. If you have any questions I feel your pain for you and your child. I hope he is doing better! Kim

My son is 17 and uses meds. They have been a lifesaver for him. I did try all the diets , supplements, vitamins, heavy metal testing, metal detoxing, IVIG, you name. And thousands of dollars later here we are again doing the meds. I really think QUALITy of life is also very important. Our kids need some relief. But I needed to know I tried everything "safe" that I could for my son. But I spent LOTS of money on all these other things. I'm not saying dont try it. SOme have had results. But I am just telling you from our experience. ANd my son was diagnosed at the age of 6. I know its a very hard decision. Good Luck. Kim

no Feingold is not worth it.

Funny you should call the"uges" because thats what my son always calls them. He does blow big time after school . As he has gotten older he has gotten a little better at holding them in but he does let them out when he gets home. Along with the storms, tantrums, whatever you would like to call it. It is very hard for them to hold it in all day and when they get home it is their safe place. My son will also have his tics or "urges" at the power of suggestion. When people would sometimes say or mention things it would give him the "urge" to do or say it. Ex. When he was in 5th grade his teacher asked the students to pray for a friend of hers that was in a car wreck and had her eye smashed /hurt very badly. Well my son comes home having the urge to poke on his eye after hearing that story. The urge is like they say having such a strong urge or feeling to do something and the more attention we bring or talk about it the more we will make them think about it. Good luck, kim

My son ( I think probably has Pandas) however his neurologist does not really believe in this. He is a great neuro at Baylor University in Texas. However I am not so sure. He did have the strep before strong and abrupt tics started. But tics have never gone away completely. But one of my concerns is that he gets sick alot. I think his immune system is very low. He catches everything that goes around school. And he has had the swine flu too. What should I do. Just pump him full of vitamins>>> What kind? Just the regular ones? He is almost 16 yrs. weighs 150lbs/ Thanks, kim

Does insurance cover the testing needed for possible pandas?

I really think my son is Pandas. He does not meet every criteria however I still believe they are still learning. Please tell me if you think it is *Had strep at age 5 . Three weeks later LITERALLY woke up ticcing non stop and severe ocd. * treated the strep with regular treatment but tics have not gone away. *Along the years did one ivig treatment, no success. * tried steriods for a couple of weeks. nothing * tried gluten, casein, sugar free diet for about 3 mos. no success. * He is now 15, ove rthe course of years have tried over 30 meds for the ts, ocd and adhd. He is currently on 3 meds. now. I still think he is Pandas even though the tics have not gone away. They do get worse with illnesses. He tends to get sick ( catches) alot. Does not have much energy to be able to do physcal things. Yet very hyper!!!! ??? Don't know what to do now. Don't know a doc. around to treat Pandas. When I first brought this to a ped. years ago he laughed at me. Our old neuro. did believe in this but he moved. Our new neuro. said that even if he does have pandas there is nothing really to do about it??? What do I do. He hascorpralia with his ts so this makes it all worse. Running out of hope here... thanks

how long did it take before you saw results?

How long was it before you saw results??

My son is 15 and he has his learning permit. We try to let him drive to get practice at it problem is he is an awful driver. He has tics like wanting to pull his hands off the wheel, floor the gas pedal and then slow down, . He gets so nervous because he is trying not to tic that he gets even worse. I know when he turns 16 in Dec he is going to want to get his license and drive by himself but he is so not ready. It kills me and my husband to have to tell him this. What did any of you do when your kids were learning to drive? We try to always tell him he can do anything his friends can do or whatever that TS does not hold him back. Thanks, Kim

I agree with your husband. With boys when they"see" you standing up for yourself they will sometimes listen more. This incident probably gained some respect for him and made "future" teasers think twice. And if the truth be known...the teachers will probably already know the other boy is a trouble maker! The stress of being teased probably caused the vocal tics. Give it a while and see if they calm down a little.

I know alot of people on here do these special diets and many have helped their children. However, we tried them with no success. Sorry, I don't want to sound discouraging. I took my child off of all that you did practically and your are right it is very hard. Hard not being able to have a night off by eating out. If its not working you may want to rethink the whole issue. Maybe slowly reintroduce some foods and see what happens. My son is on medications now but I am still not opposed to trying something naturally that might help as long as its safe. But it wore me and my son out trying to do all of that and our pockets out as well. He is older now (15 ys) so I know trying to eat some of those dietary things now would be next to impossible so I'm glad I did it while he was young. However, being underweight cannot be good either as it can cause the immune system to get low and cause other illnesses or just basically catching viruses etc. Good Luck, I hope you find what works for you Kim

My son is age 15 , weights about 145 and is 5'4. About how much glycine should I try for him and b6? I've often heard tha the b vitamins may cause you to be jittery or hyper something we do not need. Is this true? Thanks, Kim

What test would my son get for pandas??? Isn't is something like strep titers and can we get this done at regular doc's office?

My son had the swine flu. It is very hard in our area and schools now. If you notice they symtpoms ( basically same as flu, chills, fever, aches) then go straight to doc. and get on tamiflu. It does not cure it but makes it not as long . My son was out of school a week. It did make his tics worse but so does other illnesses. Once it gets in your community it spreads like wildfire. Its definitely not any fun

It was just a regular vitamin that my son took. He is currently on prolixin, zoloft, and foculin. ANy ideas??