mommyof2

We had an MRI done on our son about a year ago to cross out any brain issues...wonder if that one could still be used or if they have to have a specifice one.... would be nice if it was able to be used Mary

Thanks for the update...this is interesting. I sent the info to our pediatrician and our orthodontist to see if they wanted to research it.... This does fit in with my sons headaches...he said he gets them daily and they feel like his head will explode.... love to see the tics and headaches leave. I remember when I had tmj for a fall when I was younger the headaches I would have. Thinkng back my son had a bad hit on the chin when he was younger tooo...... interesting. I am thinking my pediatrician would do whatever I needed, he has been a Godsent to all of this and so helpful and understanding. Mary

Hi Char... this just all got me thinking... I remember when my son was just a few years old he took a horrible hit from his chin...had a big cut on his tongue... When I was a preteen I took a good fall off my bike and hit my chin and a few years later I had tmj....no longer have any problmes with it. Not good yet.... He has only been on the right topamax for 10 days, hoping they soon stop again. It was about 2 weeks on the generic when the vocals started and about about week later the motor tics. It is not as bad as it was before where he does have breaks in between the motor. Before we startd topamax he was constantly tissing. I sent the Dr. Sims info to my ortho. and my pedatrician to see what they think.... It is starting to click To me it is a small price to pay if it stops the tics...like I said I spent about that much just on an appliance for my daughters cross bite and that really didn't impact her life at all Mary Mary, Hi, my son complains of headaches and his jaw and neck hurts. My families dentist said he has a jaw just like mine and I have TMJ. So I am really wondering if Dr.Sim could help my son. How is your son doing? Has changing back to the regular topamax helped your son? Hope all is well..Char

I was thinking after reading Gemi visit with Dr. Sims and the connection to headaches. My son complains of headaches regularly and really gets them bad on car rides to the point that he complains everytime I say we have to go away. I had TMJ when I was in high school and ohhh how I remember the headaches.... this does make me wonder if there is a connection!!! Mary

Deanna here is the site with tic tamer http://www.nativeremedies.com/products/tic...&ysmtac=PPC Mary

MyRose I am so sorry to hear what youa re going through. This is such a MONSTER as you had said. I am anxiously awaiting my son to come home from a trip to the mountains with his father to see how he is doing. He had started up a bit last week--he too took a good hit to the head the week before at bb practice, lost two molars within a week, Grandparents sent them a bag of gummies---when I complained they said it will not hurt him--it's not chocolate!!!!! I gave in, and here we are... Also had him on the generic topamax for about 2 weeks when I found the vocals coming back... I had to wait utnil I could reorder and got him the topaxmax brand name..Friday would have been a week on that but I have not communications with them in the mountains so not sure how he is doing..........praying better!!!! Again Wendy I really hope today is better!!!!!!!!!!!!!!!!!!! My prayers go out to you and your sweet little girl...it is so hard to watch and so hard to know what they are going through!!! Mary

Good Luck to everyone going to see Dr. Sims...anxious to hear the outcome!!!! I had TMJ when I was in high school and remember the big appliance I had to wear to correct it. Mine looked worse than the one he made and I survived it So am i understanding it right that the kids only have to wear it for so long and then they can stop or is this a lifelong thing they have to wear..... Wonder if you have your kids tics under control say with medicine or supplements if you have to go off it all before you go and see Dr. Sims so you can see if it is working or not. We live in Pa so not too far to run to MD...I told my neice about this and she almost had her car started to head there LOL I know the cost looks high but we spent 2500.00 a few years back for our preschooler who had a cross bite..... I think this would be better money spent!!!!! Keep us posted everyone going!!!! and GOOD LUCK Mary

He just takes his whole fist sometimes closed sometimes not and taps his upper leg...no set number of times.... i think it is more of a nervous or bored thing he does we do not notice any ocd in him mary

My son did alot of hitting his upper leg with his fist....not hard..... it was one thing he always did even when the topamax took so much of his tics away... not sure why he did it???????????????? Mary

I wanted to add on the Flinstones vitamins... i was giving my son some gummy bears with no art. flavors or colors and then one day I noticed the Flinstones with extra vit. C and got them thinking they also had no art. colors and flavors. He is on Topamax and was doing very well for months and then I started to notice after a few days of the Flinstones a body twitch... doctor thought i was thinking into things to much but i stopped and went back to the old and it stopped. He is still on the topamax but he has been showing a few vocal...not bad just a hmm sound... and tiny tics noticable to me but not others but I think this is due to the generic topamax I was using from my last order....we are now on day 4 with the reg. topamax and he is still doing the sounds....hoping within a week or 10 days they go away again. It is not even close to the way things were before we started topamax 6 months ago...but I got spoiled with how well he was doing. Mary

Thanks my sil had it done at this place and was amazed by the results...might have to try it sometime.... thanks mary

Has anyone ever done this. My SIL was telling me about a nutritionist she goes to and they start with a hair alaysis and then you go and see her and they put you on this machine you hold on to the handles and it goes through your body to tell you what vitamins you are needed or have to much of. It is a bit expensive because of course insurance does not pay anything. Wondered if anyone did this for their kids or themselves and if it told them anything. Thanks mary

Hi Wendy Just checking to see how your daughter is doing???!!!!! Hope she is still doing well!!!!!!!!! mary

Myrose I know what you mean about watching and noticing everything when you have a change. My son was doing wonderfully on the topamax and I had mentioned earlier the last prescription he got was a generic. We have been using it for a few weeks and I thought everything was fine but within the last week or so I see a bit of a body twitch and now some nose and hmm sounds. I just called my prescription mail order company to find tell them I do not want the generic and would like the real name to find out that what used to be 90.00 for 3 months will now be 129.00 since generic is available. Of course I had to do it to just see if it was coincidental or if it is the medicine. It is just frustrating to know they charge you more because they have a generic and the only reason I don't want it is because it does not do the same. Nothing really changed in his life, like food changes or swimming in the pool yet so I am hoping when we get the real brand back it is back to the way it was for the past 5 months. Also funny thing is when I started this prescription they told me it doesn't matter if he takes one or 10 a day it is the same, now they charge me more for each capsule........ boy I hate insurance companies. Good luck and hope you contnue with success Mary

hmm all so familiar....maybe this is something...thanks for your story... now to try a change in his diet... or at least limit it a bit. Mary I have one dd who is allergic to dairy and one who is not. However the one who is not does better when she does not eat dairy so I think she is intolerant to it. At any rate, they both as babies would spit up entire bottles of formula. I got so I was afraid to feed them and you could not feed them without having change of clothing ready, stuff to clean up, etc. I took them off dairy and would only feed goats milk (after we stopped formula and while on formula I used something specific but I can't remember what and also used Dr. Brown's bottles to reduce gas). Things were much better on goats milk. There is a blood test you can do to see if they are allergic to common allergens but it does not test for intolerances. Now at age 7, if my dd eats dairy, her stomach bloats up and she gets very emotional. Susan

just did a search on symptons of allergies to dairy and one is headaches and my sons tells me daily he has headaches, another is anxiety.... horrible separation anxiety when younger and still has alot of anxiety...think I will have to look into this... boy he would hate to lose dairy though!!! it is a staple in our house. mary

oh i hope it continues to go well for you.......... I will keep you in my thoughts and send healthy wishes to your daughter.... thanks for the updates!!! mary

Something just hit me and I wanted to throw this out to anyone with dairy allergies. When my son was a baby we had a heck of a time with him and spit ups... I mean to the point of he was not safe from the end of one feeding to the beginning of another. And I mean a fountain not just a little slober.... Our doctor put him on milk early thinking it would help but it didn't, he was still having problems and then eventually it stopped not sure if it was the fact he was eating more foods and less milk or not but wondered if anyone else who is or has a child with dairy allergy had this when they were a baby. Is ther a blood test to know if they are allergic to dairy...if so I may talk to my doctor and see if this could be part of it. My son loves yogurt, ice cream, cheese ect and a good tall glass of white milk hits the spot for him.... maybe this could be a factor for him!! Mary

We did cranial sacral for our son and for him it did a good job. It really helped with different tics. She could really work out alot of his different tics. We did see change at the beginning but after a year or so we stopped seeing much change. I think what happen was he got too comfortable with the lady and would not lay still and relax he was always talking and moving. She told me when we first statted to go that when i brought my daughter to one of the treatments and did not see a change it was from the distraction, but then it seemed the two of them chatted too much....not sure if that waw it or not Then she told me about a man that could do the natural healing on him and that after 3 sessions he guar. he could have them gone but after about 400.00 he did not.... We were really hoping that would work!!! Now we use the topamax and that seems to be doing it for him, but i still do see some here and there and then of course get worried they are starting again....just hope they never get as bad as they were!!! Mary

his period has been lasting for years LOL just wish I knew a way to stop them... I try to ignore them and giving him any attention for it thinking he would realize it gets him nowhere...hopefully with maturity it will happen Mary

Just curious if anyone else has a child that can go through such complete meltdowns and 5 minutes later....it is over. Example: my son loves to build forts, yesterday he went out to the woods to check it from all the rain we have been having and I truely thought the world had stopped.... He ran to his room crying histerically. I was in my daughters room cleaning with her and thought okay I will let this past...but after awhile went to him and said what is wrong...he tells me his fort fell down and how much he hates his life, ect. He continued this for a bit, 20 min or so and then it was over...not another thing said. Another example when playing video games and he loses...boy does it happen... today we were at my parents for lunch after school and he was playing while we were getting lunch out and he lost in the last second and he was so upset he could not eat...he went into the room (this time not crying...but sobbing) we left him go and within 10 minutes he was making his way but in with us. He is a very emotional and soft hearted 11 year old.... when he plays baseball and pitching a game outstandingly but has a strike out he is ready to quit ball because he is no good, according to him. He can be very loving to me, but when he is upset I am told I am the worse mother because I won't let him play by the pond where he already slipped in once and there are snapping turltes around it. It is just so frustrating... I wonder if this is part of the tics or just a bad behaviour problem he has. He always cried easily when little and had terrible separation anxiety in school up until 2nd grade. I don't want to give him a free pass to act like this, saying oh he can't help it...but I wonder if he can.... He can change so quickly.... Normally he just wants to be hugged and the i love yous are constant... But when he hit a mood watch out.... I can reallly see afterwards the sadness and teh humiliation for acting like this and he does say he is sorry.................just wish I knew what to do to get them to stop..........We do tell him when he does good and how proud wer are of him and how much we like it when he does what he is told!!! okay just wondered if i was alone with this or if anyone else had some suggestions to try with him.... I would love for him to be the happy boy he really could be Mary

How much Topamax? funny because I read your post and I know I asked you this before but Im so overwhelmed I cant remember what you said How much does she weigh ?Danny weighs about 130 Melanie We use topamax too and our son is 70 lbs and taking 50 mg....hope not to have to change that... he is 11 years old. Just curious the amounts people are using with age and weight and dosage...that might make an interesting Poll. Our doctor assures me this is a safe dose for his age and weight...hope he is right!! Mary

Welcome...and sorry to hear of your frustration, been there and hated it. My son is 11, had tics when he was little but we thought they were just habits... The past two years were our worse. He had a hard 5th grade this year, with a new, bigger school. His elementary school he was with the same kids for 5 years and they were all so nice to him. This year he came home so many days crying because of the teasing we knew we had to do something. We tried vitamins and herbs and at one point we thought we had it and then it started again. We are one with success with topamax. He takes 50 mg and is doing wonderfully. Don't see any major side effects. I still see little things here and there but nothing like it was. He would constantly be shaking his head, making arm motions, sounds, just so jerky. Now he is so much stiller. I never expected to put him on medicine and really hope someday soon to be able to stop, but I am happy I have done it, he is so happy to not have the tics and he gets so worried if they will come back again someday. Good luck and know you are not alone!!!! Mary

Hello and welcome I did want to mention something about strep...my nieces son had strep with a sore throat and she took her duaghter in, no sore throat or rash, but to have her checked to be sure and she also had it.... again no signes of it at all, wonder how many kids have strep and don't even know it. Mary

HI Melanie WE saw results within a week and then in a few weeks they were pretty much non noticable. But Travis had only tics, no Pandas or CAPD or AHDD or OCD, so I am not sure if that makes a differnce. We did 25mg for about 10 days and then went to 50mg which was where they pretty much went away. We had some vocal but it was usually just a sniffing or hmmm sound, no words said. Good luck and keep us posted... I would give it a few weeks to see how it goes...sending hugs Mary Hi were on day 3 of 25mg topamax and I dont see anything good at all (of course) He is off the lexapro and hes ticccing like crazy danny also has CAPD & Pandas so I think alot of his tourettes is relates to that when should i see something anyone know? He hasnt gotten a reaction to it which is good I want to see some good stuff PLease does anyone have processing issues when danny hears you speak quick or stammer he curses and blows on his hand new tic