mommyof2

That is wonderful you were able to find out the root of the problem. It is amazing how determined a mom is to help their child. So glad you continued with your gut and went further. Good luck and hope this is the end for Baker!!! Mary

I wanted to add the name on the bottle is topiramate...that is the generic name they sent me Mary

Thanks everyone... I will have to try and research the different ingredients... I was so surprised to see this... I too do not want to rock the boat!!!! Mary

Hello to all you using topamax i have a question. I just reordered my sons perscription for topamax and noticed my bill was only 20.00 which means it is a generic name. My last order was 90.00 for three months for brand name. I am using the 25mg sprinkle caps still...wondered if you are all using the generic name or brand name. Don't want to end up back where I started because of a change in the prescription. When I originally called they said that there was no generic for topamax...Thanks for any input. Mary

Healthy Wishes sending your way...hope you daughter does well off the topamax!!!!!!! I am looking forward to the day we go to 25mg going to give it a year or so first. Funny topamax is to help with migraines...... my son complains of a headache alot... even before the topamax. I was hoping this would help him but it hasn't. I know it is mostly from stress though, he gets so worked up when he has alot of work ahead of him for school. Hates riding in the car and working in the computer lab at school...those don't help. Well anyways I will be thinking of you June 4 Mary

Deanna I understand your concern, I have my son on Topamax. I started with 25 mg sprinkle caps and in 10 days we went to 50mg... i said I would never go higher. We put our son on this around Christmas and he is doing wonderfully. We do not limit any food intake or video play. Of course we as parents do not let him overdo either but not because of his tics. He was diagnosed by our pediatrician with complex tic disorder. He was having alot of jerking in his body, some vocal noises and now we have nothing. He is in fifth grade and the tics were very noticable this year and kids were really teasing him, which pushed me to find something to help him. We did try many many other natural medicines, cranial sacral, took him to a healer and chiropractic. I do notice when he gets excited or nervous he hits his hand on his leg, but I just consider that a nervous tic like alot of people have...such as bitting your nails when nervous. He no longer makes any noises. His pateranl grandparents saw him for Easter... they have not seen him much in the past few months and she commented to me wondering if our son was outgrowing his tics because he seemed so much better. I hadn't told people we was gong on the medicine to see if they noticed it. I then told her, she was just amazed by the success he is having. My parents could see the change way back in January since they see him more often. Even parents of his baseball friends have commented to me on the change in him from last season. The biggest side effect I can see is he is a ltitle more tired and ready for bed. I give him his medicine at suppertime but during baseball game nights I wait until after the game. I notice his pitching is not as strong right after taking the medicine. The doctor said at this small dosage the fear of kindney problems and such is very slight chance of happening. I see such a change in my son and he comments on how happy he is they are gone and his biggest fear is for them to return. Hoping for you the same success we have had....... Mary

Linda our pediatrician prescribed it for our son.... Mary MyRose, Do you have to get the topamax prescribed by a neurologist or can a peds doctor do this as well? Linda

Abbe glad we could help you through this.... I know it was the toughest decision I ever had to make for my son to put him on medication but am thankful we tried it for the results we see. Our son did 25 mg for about 2 weeks and it slowed the tics down but he still had them, then we went to 50 mg and within about 2 weeks they were pretty much all gone. He started Dec.20 and now we really don't see anything that stands out and we had comments from many friends who had not seen him for awhile how they notice a change in him. Our pediatrician actually prescribed this for us. We had been talking to him for awhile about them and he had diagnosed our son with Complex Tic Disorder and suggested some of the other medicines at first, that lower the blood pressure and I said absolutely not. Then at one visit he had mentioned Topamax and the great results. At about the same time I was reading this on this board from Wendy and I started to listen to him and did more research and after all my other roads came to a dead end I reluctantly did it.... I am hoping to someday take him back down to 25 mg hoping that will do it for him, but for now I don't want to mess with it. He is finally adjusting to not ticcing and feeling so good. He still plays his video games (some PSP and Gamecube) but not alot because the weather is nice so he loves to be outside....rainy days are a different story and does computer like his Club Penquin and loves to google everything, and nothing seems to effect him. Mary

So glad to hear how well your daughter is doing on Topamax. I too am so happy with the results I have seen in my son. We are on 50 mg and he is 11 years old and weighs 69 lbs. He is pretty much completely tic free now and we do not really limit his food intake or activities. The mild one he may do here and there usually when he is overexcited is not noticable to others, just mom LOL. I feel as if we had exhausted all other things for our son before we went to the medicine and do hope some day to be able to back off and only do 25 mg and eventually stop (my my mouth to Gods ears). Anyways I wanted to thank you for all your kind words when I was on the fence to try this!!! Mary

OMG someone must have been reading my mind because I was just about to do research on this for my son.... His tics are well under control with topomax which i am so thankful for but his frustration and getting upset at simple things such as video games is about to drive me crazy. I am sitting here as I am writing this listening to him yelling and ranting about a paper organi thing he brought home from school that he can't get to work... I mean it is a bit quieter now but 15 minutes ago he was literally screaming and crying because he could not get this to work. I wonder if this is part of his disorder or just his personality too. This has been like this for years... Just seems to be worse lately. We tried telling him him that if he goes 7 days in a row without an outburst he will get a reward.... but we only got barely one day out of him... I thought if he had something to work towards it would help... Boy I wish I knew what to do with him!!!!! Mary

Hello no my son has no problems with ADHD or focusing. He is in averaging about a 90 in school and has always gotten good reports from his teacher in his behavior in class. Sorry I can't be of more help. I just know topomax has taken about 98% of his tics away. The little he does now is only noticable to me becsause i watch so closely but to others it is no different than little habits most kids do have. Mary

We also are using topamax with good results. We are using 50 mg (sprinkle caps) and I give to my son around supper time. Found when i give too late in the eveing he has a hard time getting up at 6:00 for school (yes 5th grade and bus comes at 6:30) It has significently reduced his tics. He has a little body twitch he does once in awhile, notice more when he is excited and a nose noise...hoping that has to do with the seasons. His face is so still I just want to watch him always and no more hand jerking. We have been on this for about a month. We went the natural route but just couldn't get a grasp on it. Hoping he continues to get better and grows out of them Mary

Abbe you made a statement that really hit home..... I felt the same way like these tics were absorbing my sons life and my life as well. I felt so bad for him and spent hours on the internet researching things for him. One night he said after being told to slow down on the video games, which he loves, these tic are ruining my life. I felt so bad for him. He loves baseball, hunting, playing football and basketball at the house.... fishing, reading, drawing and just simply playing. Only watches sports and weather on tv but when he can he loves siiting down and playing his video games. After LONG thoughts and countless herbs, Cranial Sacral and even a Native American Doctor who guarenteed he could take these from our son we put him on topamax. He is now taking 50mg and will take no higher dosage and he is doing so much better. I can still see them slightly but i am a mom and notice everything but others do see a Large improvemetn. He plays video games when he wants and eats what he wants. We are not into giving our kids soda or piles of junk food so he eats as his sister does. I made my own NY's resolution to start spending more time enjoying both my kids and less time worrying. I felt I was letting my daughter out spending so much time trying to figure these tics out. Now we spend alot more mommy daughter time and mommy son time... although he gets alot of daddy son time too Mary

ALMOND MILK CHOCOLATE Is this a type of milk or a substitute you add to millk... sounds like something my son would love too... never saw this before. I would do the natural calm with v8 fusion drink but my son went through stages of complaining and not liking it.... i don't think he would complain much of chocolate Mary

Yes Char I would be happy to keep you updated. As I said so far so good. I have noticed him sleeping in more since he is on the topamax, but that also could be due to the Christmas break and staying up alittle later than normal. No my son did not have eye rolling, he stared in about k-garden with blinking, hand smelling and mouth stretching. We called them habits at the time and would tell him everytime we saw to stop and finally he would and then something else would start. It wasn't until about 2nd grade when they got more noticable and more movements like arms and hands. In about 4th grade they just seemed none stop. It seemed like he would not even get a 10 second break from one. I now noticed since we started the topomax that he is still for longer periods of time, but like i said still does some. My parents noticed them getting better but as a parent I tend to be more conscience of them, seem to be watching him and praying the next thing we try will help. We were so optamist about a month ago when we took him for treatments our Cranial Sacral lady told us about. She and a Native American worked on him by healing him with touch and would go from the outside of his ora to the inside. We had 3 sessions and they said that he will be fine... well he still had them, so we went to the topamax. Myrose has been very helpful and supportive for me and I thank her for that. I will keep you up on his progress. We did decide after a week and a half on 25 mg to go to where the doctor told us and give him 50mg at night and that is my limit... just hoping for a little more improvement and I will be satisfied with it. I tell him I don't expect everything to stop... He has his own little things that make him him. Just would love to see him be able to run around and play with his friends and not be flapping his wrist so hard. He is a very good pitcher for his baseball team and I would hate for his wrist to wear out Also hate seeing kids making fun or pointing at him for this. Mary[/font][/size]

Hello char I am not myrose... but I have started my son on topamax about a week ago. We started on 25 mg and so far he has no side effects. He has slowed down a bit but still has some tics. I am sure the fact he got a psp for Christmas and he is having so much fun playing with it is not helping but I hate to take all his fun from him and soon his play time will be watched again. He will be 11 in Feb. and weighs about 69 lbs. My dad and mom really noticed on Christmas that he is doing better. We haven't told anyone about the medicine, wanted to see if they noticed...they were quick to tell me whent hey saw the tics, wanted to see if they would tell me when they didn't. We sitll have a sniffing he does but not sure if that could be something with his sinuses and he does a body twist, but not nearly as bad and a few hand things but they too are not as bad. His head moves a bit but I am thinking that is connedted with his sniffing... he tics more when the sniffs, like it jerks him. It has only been a week but I am still giving him his b6, grape seed...scared to stop that until i see then really going away. The doctor wanted me to go to 50mg after a week, but i think i will wait just alittle longer and see what happens before i go higher...if i do that will be the top for me... For my son the 10th year has been his WORST year ever... They were not nearly as noticable to friends and family that doesn't see him often. HTH Mary [ quote name=Char' date='Dec 27 2008, 08:40 PM' post='28966] Myrose, It's so great to hear your daughter is tic free again! I hope you had a great Christmas. I did, it was great to just enjoy the day with my family and not worry about my sons tics if it was just for one day. I decided not to worry and enjoy the day, I am glad I did! If you don't mind, I have a couple of questions for you. You said your daughter is on topamax. I am glad that you have found something to stop your daughter tics. Just wondering when you started your daughter on topamax, did you see any side affects? Do you see any side effects now? I am wondering because I want to look at all options if my sons tics get worse. Because I have read they can get worse between the ages of 8 to 13. My sons turns 8 soon. I am praying they do not get worse but I just want to look at all my options and peoples experiences with different options. Any thoughts would be great. Thanks Char.....

Wonderful news!!!!! Hope you and your family have a enjoyable and relaxing Christmas Mary

Matt Thank you for your encouraging words... My son is 10, will be 11 in Feb. and started tics when he was also about 6 but we considered them habits... one thing happening at a time--ex eye blinking, hand smelling, and when one would end the other would begin... about 2-3 grade, more things started to appear with body movements and from 4th grade to now more intense... It is encouraging to hear that maybe this will be HIS worse year... crossing fingers for them to become milder. We have never started medications yet, just b-6, grapeseed and Kids Calm... Again thanks for your words mary

wanted to share what i read about in our usa weekend.... it is about the herb turmeric... they say it has been used by the Chinese and helps with lots of things from cancer to parkinsons... i think of these tics my son has like the movements of parkinsons... says it is safe to consume. might be interesting to try... here is a link of what it can help http://www.whfoods.com/genpage.php?tname=f...ice&dbid=78 mary

That is what i would have thought also... how did you find out about the food allergies... do you have to go to an allergist and do the same testing with needles like i did when i did my allergy testings for mold, pollen and such... Thanks Mary

Fatih that is a good question... you know alot of my family didn't even notice my sons tics until i started to talk about it, they just took him as he is... now they still do but tell me now they see it... To me my therapy was talking about it, didn't feel like hiding or ignoring it. It did help... My sister just told me this week that she had her nephew, from her husbands side, over and noticed him with a wrist twitch, never saw before... he is in first grade, about when my sons started to be noticable things, she probably wouldn't have noticed this if it wasn't something we know about now. Pat I am with you on tha feelings of a bad mom, somedays i just snap...try not to, but it does happen. I just explain to my son it is me... not him and that i love him very much, he is a very sensative boy and understands how much i love him as he loves me regardless...walks around the house saying it often just out of the blue, even when he doesn't know i am listening. Our smelling tic came and went.... now we have the head bobbing that just won't stop... I say to my husband often i think i need medication to handle it, of course i am just joking...wouldn't do that, but let's him see my frustration, he is not around it nearly as much as i am!!! I just go for my time outs when it is too much.... ((((((( hugs)))))))) coming your way!!!!

to see a difference.... I started Bonnies Vitamins on my son about 1 month ago and see nothing happening...actually seem to be more. Should I keep with this or go back to my other vitamins... I just hate seeing him have to take 10-12 vitamins through out the day when nothing is happening... or am i expecting too much too fast. I know it says to give it 2 months...but does anyone who uses the vitamins see a difference eariler. fyi i did have him on b complex stress, grapeseed, viatmin c and fish/flax oil combo... Thanls for any input... I am going crazy with the head jerks... I have to turn away so much, and i feel horrible for doing it, I know he is frustrated too but tries so hard to keep up with his medicines without complaining!! mary

Thank you so much for your words. I know this routine did help him very much... We are awaiting to hear back from his doctor about a doctor in our area that does cognitive behavior therapy...maybe this will help him again if i was able to do it for him the first time I also have an email in to his teacher about the teasing...have not heard back from her yet but will see her tonight at swimming where we both take our daughters and if will ask her if this has been taken care of with the boy. Our school has a CARE program and one is respect..he is not following the program. I just try and tell my son that most kids who tease do it because they are unhappy with themselves and feel they need to hurt someone else to make themselves feel better. He is home today from school, he was sick yesterday and just not up for school today... I am not sure if it is sickness still or just needing a day home with mom. This is the first day in a while he stayed home or wanted to... so i am not pushing him, happy to say the tics are on a down level just a few hand motions and face glimishes....the one where he is lips go into an ohhhh! when talked to... Mary

i tried to make my own cream once, but it got so runny... must have done something wrong... i will have to check out kirkman labs and see what they have... i know he would rather have lotion rubbed on than sitting in the tub. I see they have detox pills too. we did the tea that was mentioned here, but didn't have any change from it. Does anyone else have any luck with such pills. Funny thing, as I said earlier my son had a really bad day on Saturday and went fishing with his dad on Sunday and got sick on the way home and a few more times that night...wonder if the onset of the flu caused him to do so badly on Saturday??? mary

Thanks everyone, Yesterday was a really tough day... he was just none stop.. He usually is not as bad in Church but when we went last night, usually go on Sunday mornings...but it was going to be a late night and we wanted them to be able to sleep in...he was just constantly moving his head and shoulders...i would just put my arms around him and try to hold him from moving so much... we then went to my sisters for her bday and we were around a whold new group of people... and i could just see everyone watching him...constantly ticcing. I felt so sick in the stomach... I told my husband today I just don't see it ever stopping. Then i did read an article saying the 10 year is the hardest year for kids who start around 5-8...which he did.. I noticed the big ones starting in about 2nd grade... Well he turns 11 in February and this has been the worse year yet so hopefully there will be some light. He is with his dad fishing today... when they left my husband said the good old fresh air and a few fish will help... I did stop his fishoil/flax seed again...just not sure if that is a cause or not... Hopefully bonnies mixture will take with him. Again, you are all so great... i really don't think i would be able to hold my sanity without this forum. My family is great but NO ONE has any experience with this at all and most just don't understand. I have a sil who knows he can't help it and almost everytime she sees him and he does his flinging his arms up she always does it back and says WHAT.. .it drives me nuts... Mary