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mommyof2

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Posts posted by mommyof2

  1. He was on topamax since January 2009 and we have not really done much with dietary elimations other than watching red40 in his diet as well as not alot of soda. Last summer he had a flare up and we upped his dosage to as much as 75 mg but only for a week or so, once i saw it did not diminsh the tics he went back down to the 25mg.

     

    Trg girl...I do not notice alot in focus problem...he had gotten honors all 4 quarters last year.

     

    Mary

  2. It has been awhile since I posted...i come back and read periodically but wanted to post a positive. My son, turned 13 in Feb., is doing wonderful at the time. He is taking 25mg of topamax which if things continue as they are I may consider to go down to 15 mg or take him off. He started with the ortho. last summer and i was worried things might get worse with teeth being pulled and jaw movements, but they haven't. I mentioned to our ortho. about Dr. Stacks and the jaw associations with Tics. He actually went to school with Dr. Stacks and our ortho is very familiar and treats TMJ. He put a herbst appliance in my sons mouth to pull his lower jaw forward. In a month that will be taken out.

    Also last summer we did have a big flare up on his tics, as we had the summer before. I was thinking it could have an association with chlorine in the pool. This summer we put a salt system in our intex pool but he does still swim occasionally in my parents chlorine pool. He has a few tiny unnoticable tics, such as an eyebrow lift but it is barely noticable to others just to a watchful mom.

    I am hoping that he is beginning to grow out of them, as my pediatrician assures me he will :) but I was not a believer. It is so nice to have a nice relaxing summer with the kids.

    Just wanted to let you know how things are...I am seeing a light at the end of this long tunnel.

    mary

  3. my son just started orthodontics work and he is using the herbst appliance. The reason he suggested using this was on the way to talk to them about braces my son mentioned that when he brings his lower jaw forward the urge to tic subsides....it was not something he could do long though because it hurt after a bit. We mentioned this to the dentist and Mr. Stacks device and he actually went to orthodontics school with him and he has done alot of research on TMJ...I had it when I was in high school and went to see this same orthodontics but at the time he was just learning and sent me to someone else. Our orthodontics is working up a plann to help his teeth and tics hopefully. He is a believer that the jaw can cause tics so it was a good fit for us to go to him. My son has his top braces on and the device was put on about a week ago. He is doing great. I was worried about them starting up with the braces but so far so good.

    What the herbst appliance does is bring the lower jaw forward and he will wear this for about a year and the jaw should grow to the correct bit. Crossing fingers :)

    Mary

  4. My son is also on Topamax sprinkle caps...25 mg...he is doing fine with it, no side effects. He did start up in the summer from June til about the middle of August but not sure if that was due to swimming in chlorine...since on topamax he seems to do wonderfully from Sept to June and then we had a few bad summers. He just got braces put on and we changed his multivitamin to a teen boy swallowable kind since the gummies were not good for his braches and he questioned me the other day if i noticed him ticcing and I said just alittle bit not bad and he said he noticed since he started the new vitamin his head wanting to more more and wow they were full of art. colors and flavors...so we stopped.

     

    Our ortho is using a device in his mouth to see if bringing his lower jaw out will help with his tics. He was looked over the info from Dr. Stacks and is working with that...crossing our fingers that helps :)

    Mary

  5. I understand exactly how you feel. We were determined to not medicate our ds also. When he went into 5th grade, when all the schools combined the kids, he had alot of new faces to deal with and that is when the picking started. He was ticcing for the earlier years but the kids just new=ver even commented on it...he was a well liked boy. Well after reading on here and some good results from topamax and a recommendation from our ped doctor we did it. We started him on 25 mg of sprinkle caps for about 2 weeks and then went up to 50 mg. Within about 4-6 weeks they were pretty much gone...no one could notice anything. He had ALOT of motor and just a small vocal here and there. He is now on 25 mg and doing great with no side effects. We did notice the past two summers them starting but I am convinced it is the chlorine he swims in. He will not be swimming at the beginning of next summer to see if they start. Just be sure to start slow if you use this. HTH

    Mary

  6. Hello all

    Well after 3 different orthodontic visits I believe we found the best fit...I am so happy!!!

    On our way to our first orthodontic my son says to me you know mom when I bring my jaw forward i do not feel the urge to tic ( note he was doing great for the past 9 months and is on topamax but summers he has flared up the past 3 years) but he says it does hurt and is not comfortable to do. So when we went to the first orthodontist I mentioned this to him and explained his tics...he said I never heard of such a thing but won't argue with me (he is a very nice doctor and was going to work on a treatment to bring his jaw forward but just didn't seem to be knowledgable on the tic subject) so we went to our second one and really didn't mention anything about it to him, he was more of an old school doctor wanting my son to wear a head gear and both wanted 4 teeth pulled---he really has a big overbite and a small palete and has a tooth that will not come down due to crowding and one that is coming out the front.... Anyways yesterday we were on to the third and this was the same orthodontics I went to 20+ years ago when I had TMJ and he diagnosed me but sent me elsewhere for treatment. So we went through the exam with him and he only wants 2 teeth pulled and this will give wisdom teeth room to come up and some shaving on the teeth. This is a dentist that seemed to think outside the box...anyways i asked my son if he wanted to mention the jaw movement and he said NO....well the dr asked me if there are any health issues he should know of and i said i must tell him...so we spoke of his tics...him on topamax (which his son is also on for neck injury at 200 mg) and the jaw issue and he said I can see how that would come into play with the tics. He personally knows Dr. Stack that people have talked about with the mouthguard and said they went to denstristy school together and he has been following him on his studies with TMJ and said he thinks he is on the money with his concepts. He said he feels he can find a treatment to help him with his tics and his teeth and is looking forward to the challenge.

     

    It felt so good to come out of a doctors office and not have felt like they looked at me with 4 heads like some do. My pediatrician really is great and helpful but I think he thinks i am overconcerned. And everyone I talk to including the people we get our pool chemicals from thinks i am crazy on the chlorine affecting him....

     

    Just thought i would share my experience...anxiously awaiting the next month or so to see if son's tics subside again!!

    Mary

  7. Thanks for responding...so if your son was out a day or so it didn't stop.... We use well water so I am thinking it is okay for him to be in. We will keep up with the epson salt soaks at least maybe it won't get any worse. I hate wishing summer away but I am...I know how much he loves the water

    mary

     

     

    Hi Mary

     

    we felt the effect was cumulative...the more time in the pool the longer the resultant tic increase. It reached the point where my son developed hives as soon as he came in contact with chlorinated water (even from the faucets!)

     

    epsom baths definitely helped...but we ensured we had faucet filters to clear the chlorine from the tub water too!

  8. I have a question for anyone who found chlorine to be a trigger....When out of the pool for a day or so do the tics go away or does it take awhile. I ask this because I am assuming that chlorine is the trigger for my son....but he was not in the pool today and he still has his head nod. Yesterday he was in our pool and when he would get out I would spray him with epson salt and water and he seemed not to tic as much and says he doesn't feel like he has to but can if he wanted to. We also have him do the epson salt food soaks at night...but not sure if that is helping or not.

    Last two summers it seemed like this was his bad time of year...two years ago was my first notice of hit...bad...last summer we noticed it but not as bad, like this year...topamax might be helping with it.

    Thanks for any help!!!

    Mary

  9. Thanks Abbe...

    bmom... I do beleive it is the topamax...I use sprinkle caps

    I do not know of really any side effects that he is experiencing...unless things are happening I do not know about but he is doing wonderful in school..lowest grade average is a 93...and in two classes a 96 and the clasees are hard....so he is able to concentrate and retain knowledge. We do give it to him in the evening in case it makes him tired and when he played baseball waited until after we came home....he is a pitcher and to be sure we wanted him to have all his strength.

    I also found that giving him B6 and Vitamin C is important with his multivitamin. Now that this has stared again with the swimming we try to have him soak in epson salt foot soak each day and I started back with the kids calm in some applesause with supper. I also try to convince him to swim in my parents pond rather than the pool...but that doesn't always work LOL although he does enjoy jumping off their bridge :wub:

  10. Hello All

    Haven't been posting in awhile but come and check things out once in awhile. Son has been doing great this past year. He is on topamax 25mg at night and tics have been pretty much non exist...little things that I notice such as a nose noise but then when we had him to a native american healer he said that there was a birth defect in behind his nose most likely causing it...anyways back in Feb. we went on vacation and our son spent some time in the pool and I started to hear some noises and some minor tics happening....a few weeks later they subsided then we had swimming at school for 3 days and again things started alittle and slowly subsided. Now we are at summer and he spent 3 times in my parents pool and an eye tic and a small head nod started. The same thing happen last year and i blamed it on a good baseball hit to the head and a change to generic topamax...but now I am thinking it is chlorine because in Sept. they ceased. Can't keep him from the pool he loves it so we do the epson salt soaks and hoping it keeps him under control a bit. Not looking forward to braces getting started after hearing things on the board but he wants them so badly...his teeth are in a mess so guess we will see what happens. Read here about dong some kind of allergy treatment to stop the allergic reaction to chlorine but can't find anyone in the Pa area to do it...

    Well just wanted to say hi and give sons update.... Thanks for listening

    Mary

  11. Hello

    We are using Topamax and are very happy with the results. Our son, soon to be 12 and about 65 lbs is now only taking 25mg at supoer time sprinkle caps. We use the name brand and not the generic....He was doing great on it but when they sent me the generic in about 3 weeks they started up...not sure if it is coincidence or not but not taking any chances. We at one point were using 50 mg and when things were really bad after the generic switch we did 75 mg for about a week but went back to 50 mg and finally back to 25 mg. Just be sure to start slow with low dosages. We have no side effects and for the most part is tic free, enough that i get many comments from others how well he is doing, not seeing anything. I know diet is important and a good place to start...I was not in a hurry to medicate but we finally broke down when the teasing started. We also give him a multivitamin, B6 50 mg and vitamin C... we did a hair analysis a few months back and it did show he needed B6...which i was already giving him..... I do think Vitamin C is important for him also.

    HTH

    Mary

  12. Hello Faith

    I have been here off and on but haven't posted in awhile...Update my son is doing VERY Well at the time. Do you remember me having issues back at the beginning of the summer and lasted up until about Sept. Well all done. I was not sure what started it all off again since we did the movies for the first time in a LONG time, generic topamax or teeth coming out well I am thinking it was the topamax because over school break we did the movies and he lost 2 teeth in the last few weeks and still doing great. We are only giving him 25mg topamax and I have been told by a few people that observed how well he is doing. I do see tiny things here and there but nothing major. He is also fighting a cold/allergy not sure which it is but everytime he goes to my neices for a long period of time to play or overnight he seems to come home with a running nose or something, one time his eyes were pink and itchy---not pink eye just allergies in them....it usually takes him a week or so to be better and still no ticcing.

    I am so thankful for this board and all the helpful people and the courage to figure this out for him...hoping he grows out of it one day... he is soon turning 12 and it has been it's worse for him from 8-10....

    Mary

  13. I do the allergy shots but do not have tics. My nephew does the drops and does not have tics. My niece did the shots for about a year and now at 13 is suffering from a form of arthiritis that the specialist told her most likely erupted due to the shots. Not saying later in life,due to she has the gene for it according to test that she would not have had this problem later in life ... but the shots elevated it and brought it out early. I look at her and the pain she is in and the lost school time she has had and the sickness she goes through trying to find a medicine she can took breaks my heart.

    Mary

  14. wow this sounds so much like our son, Although he is a pretty good kid.... I notice how when he gets interested in something it is all he thinks about. First it was sports...you could ask him anything about any team and he knew it...at 8 years old talking to him was like talking to an adult. He was either outside throwing the football or baseball or playing basketball.... Did great at playing baseball as a pitcher because he practiced all the time. Now he got hooked on Star wars...and that is always on his mind...from the video games, to the shows to the constant internet searches to the legos and that is all he wants for Christmas...this is a hard one for my husband and me because we just are not at all or ever was into Star Wars and we get so tired of listening to it all. He had small phases of hotwheels and such in between also. I told my husband hopefully this is just a phase and it will change soon. He really changed in the last year since he had new friends and this new interest...can't get him to much at all outside...my husband is a big fisherman and hunter and does enjoy playing sports with him but he just has a hard time being bothered by it...he does it somewhat to keep his dad and me happy but you can see his heart just insn't in it.

    oh that would make him look if i told him no sugar !!!!

    Mary

  15. wow i never knew that aborted fetal cells for chicken pox vaccines.....that is terrible...........

    mary

     

     

    mar,

     

    I would check the internet and find out what is the law in your state.

     

    I printed a VA exemption on religous grounds from the computer. My DD was to have the chickenpox shot again entering the 6th grade. She already had it in K and when I found out this vaccine uses aborted fetal cell, as a Catholic I will refuse.

     

    Good luck,

    CP

  16. OMG how sad this is...this is why my kids get no vaccinations that I am not forced to get to have them in school and when they have to get them...I do one every couple weeks and won't let the doctors give them a pile of shots in one visit!!!

    Mary

     

     

    very upsetting video. What was really awful, various medical professionals were saying that this was all in her head. Other's have said that it was all an act.

     

    The Utube video

    http://www.youtube.com/watch?v=ja7lCIp04YY

     

     

    Schroll down and play video. Then be sure to listen to the interview with Dr. Buttar, located right above the video

     

    http://blogs.healthfreedomalliance.org/blo...ad-to-recovery/

  17. that is wonderful to hear...light at the end of the tunnel

    my neice makes her confirmation this year and asked me to be her sponsor...getting good at it...i was her brothers sponsor two years ago and in two years my son will make his :)

    Mary

     

     

    Hi all just thought I would tell you this.

     

    My youngest DD is taking her Confirmation classes and when she put in the class prayer request about her brother's TS her teachers told her all about her son's TS. He is in his twenties and living in CA he is TS free. She said is was about 6 years of a really tough time when he was younger, the OCD was the worst. He is living it up with no OCD surfing the CA waves.

     

    I just wanted to share that,

    CP

  18. Michael

    A few months back I ordered off ebay a subliminal tape to help reduce tics. He listens to it each night...4 tracks...3 have ocean sounds 1 no sound, each track 10 minutes. He loves them, asks for it each night. We started for a couple weeks having it on all night by repeating one track because he didn't like the quiet time on hte last track. Now we do only let it on for the one full set, unless he asks for more. Not sure if that was a help of his tics being so much less or something else, but it relaxes him and he likes it so we just do it. We recently put a hepafilter in his room and he takes an allergy pill so like I said not sure what it was to hlep reduce the tics......Maybe this would help you relax also.

    Mary

  19. how interesting... I remember our cranial sacral lady telling my son at a visit she was learning a new technique that you tell you yourself... what would it feel like to not have to blink, ect. and it will tell your brain not to do it. I know the mind can really do alot. It helps sometimes, but did not take them away completely, of course :(

    Like I said, a very intersting concept....

    Mary

     

    My experience (or non experience :wub: ) with NAET:

     

    About ?10 years ago, after pretty well throwing in the towel re: treating my TS son's food allergies by avoiding the foods (only thing that really helped....we had been to environmental medicine MD and gotten "neutralization" drops --sublingual-- for food allergies,....those didnt seem to help, although completely avoiding the offending foods DID help.....I started traditional allergy desensitization shots for him,etc) HOWEVER......I was still VERY interested in "alternative"/natural etc treatments.....

     

    .....and I learned of NAET.

     

    I read a book about it (written by the originator of it, as I recall?) and learned of a training program for it,.....and was considering going to it. IT was in California, and would involve being there at least a week,...alot of expense for me at the time.....but I lived in a rural area with no NAET practioners ANYWHERE around....and, I was seriously considering it....to go, learn the techniques, and do it.

     

    While trying to decide about this, I found the name of an accupuncturist about a 3 hour drive from me (nearest NAET practitioner) who used it. I called and talked with her about it. SHE TOLD ME....that she had trained in NAET, used it,....but then she told me about something else...much simplier....that she had since trained in, and used with (she felt) just as much success.......and encouraged me to look into it instead........it was called "TAT"..."Tapas Accupuncture Technique" (or maybe: Tapas Accupressure Technique".

     

    It was developed by an accupuncturist, and had shorter training sessions......I think the one I went to was two days. I googled it up after reading this thread....there is a site about it, and she does still offer workshop (the one I went to was in Toronto...fall of 2000).

    I see on her website, she now offers teleconferences to teach the entire technique, as well as has CD and DVD's specific to allergy treatment:

     

    http://store.tatlife.com/index.php?main_pa...;products_id=42

     

    (try looking the whole site over....I think much of the info for doing it yourself is on there for free)

     

     

    It is MUCH simplier, you (hah! ...it sounds so bogus....) basically THINK about the offending thing, and use these particular accupuncture places for your hands, etc on the person.

     

    ANYHOW......I came home and by then, my TS son's TS was basically controlled by then, in fact, I think he was off of the catapres even by then....and he was a high schooler not real interested in this weirdo stuff.........

     

    HOWEVER, my youngest was 10 years old then.....and an enthusiastic/intersted kid in general. HE had recently had alot of problems with allergies and we were suspecting the house cats, among other things. Both of my older sons had rated high to cat allergies when tested with skin testing, and we had been keeping our cat outdoors and out of the bedrooms as much as possible (because we couldnt bear to part with her), which seemed to be enough to help their allergies. And so my 10 year old son wanted me to treat him for cat allergies, so we wouldnt have to actually get rid of the cat if that turned out to be what was causing his problem.

     

    And so , I did.

     

    Then, a few months later....he went for skin allergy testing. He tested positive to all the common things, just like his brothers did,...dust, mites, molds, some trees, dog.......but.....hah.....COMPLETELY negative to cat.

     

    Coincidence?

     

    who knows....

     

     

     

    anyhow....that's my experience.

     

    If I were you....I 'd look into TAT anyhow. As I recall, it was either $150 or $300 for the two day course......but it was excellent, and they were very clear at explaining it, having you practice with each other to, etc....you most definitely went home able to practice it.

     

    Honestly, I think alot with techniques like TAT is (honestly) suggestability. The mind has HUGE capacities. PERHAPS the fact that my 10 yo's mind completely "believed" that this would remove any cat allergies was the way it worked. (or ...maybe not....)

     

     

    Anyhow....I wanted to share that experience with you.

     

    BEST WISHES!

  20. wow...my son has been on this since December and we haven't noticed any hair loss .... anyone else here on topamax notice it???? We just took him from 50 mg to 25 mg since Sunday..hoping we can stay at a lower dosage and the tics do not come back again. We had an increase in them at the beginning of the summer, blamed it on the generic but it took a good month or more on the brand name to get them back under control and then the vocal was still there... funny that started in june when swimming started and that noise stopped the beginning of sept with no swimming. I am anxous, well not anxious, more curious to see if it happens next summer again.... if so I told my parents, where he swims the post, I may invest in a chlorine free sysem for their pool.

     

    Hope Nicholas does good after being weaned off... at least you have other things that seem to be helping him after finding the mold connection...Good luck!!!

    Mary

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