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carolyn_lsc Could you recommed some soaps/shampoos?
Sunflower replied to Sunflower's topic in Tourette Syndrome and Tics
Thanks carolyn_lsc I really appreaciate it! -
Hi carolyn_lsc, Chemar has advised me that you might know some good soaps for allergic individuals? what things should I be avoiding in soaps and shampoos? I notice that when my partner (has mild tourettes) putts on deoderant his tics get worse so need an alternative and hypoallergenic soaps/shampoos/toothpaste. Could you also recommed a toothpaste? I know flurode is bad for tics...or something like that?? any help be appreciate thanks so much
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I also noticed that. Do you have troble swalling meds too? It could be the med thats is or caused this.
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Thanks Chemar! I appreciate you helping me out
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Hello, My partner has tourettes and he complaints about this tummy tics It looks like his pushing his muscles in and out and then letting them go he does this like every 2 seconds continually through the day He says he feels like he needs to do it - its like a craving and gets some releif for a few seconds but then the craving starts again so he continually does it over and over again during the day till he says he has accidently hurt a muscle in his stomach....... Does anyone have any experince or suggestions on how he might be able to diminish his tummy tics? any suggestions or help would be much appreciated
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Find a DAN! Doctor he will know how to make sense of those exams also a DAN dcotor can refer you to a PANDAS doctor if required you could try going on an antiviral meds and see if the high viral titres are related to the tics....e.g if you can reduce the tics and see if the tics subside. Has she been recently vaccinated e.g MMR? or had exposure to strep u should tell ur DAN doctor
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hi Could somone recommend a calcim? I am a little confused about what the best calcium to use for somone with tics tourettes? I think bonnie said to limit magnesium sterate...some calcims have this. so looking for a calcium could recommend?
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Hi I have began to notice that we when go to certain places my his tics get worse. Does this happen to you? I am trying to check if its just an accident and will double check next time we go to these places again anyway what happend... we were driving in the car going to the supermarket his tics were very mild and somewhat undercontrol we enter the supermarket the minute we enter his head movements start more frequently and severly so does his eye blinking....literaly the moment we put foot inside the supermarket then while he was driving I took some bread from the back seat and made myself a ham sandwich the air conditioning was going and windows closed. the moment I opened the bread bag he started ticcing. then went to doctors and same thing happened. The moment we sat down at the doc he started ticcing. he has tic so he is always ticcing but the go from mild to bad quickly anyway I again asked him how he felt I massaged his head just incase he was stressed but seriously he looked relaxed and he confirmed that he felt relaxed when we walked into the doctor and sat down.. I guess it could be a coicidence that certain places cause more tics? meds I also notice that he has troble swallowing medicines as his toungue does not do the normal thing - toungues do when one says "Ahhhhhh" his tougue does not lie flat but rolls up it seems like he can't get his toungue to go flat so that doctos can examine him. He usually prefer poders to tables he can break into pieces as he is afraid he will choke with the pill. I think this might be because of the flem in his throat which he feels restricts his throat and makes him want to grunt and clear his throat - this is what he has told me. Body temperatue He also seems to complain often of feeling hot and seems to sweat quite a fair bit. antibiotics when we started on the antibiotics his symtoms seem to be getting better and better gradually but I am still putting the pieces together so that I can do futher test with the doctors. Pandas i hear that most people with pandas when they are sick their symptoms get worse but thats the opposite with my boyfriend, when he is sick his tics get better. he alsmost looks like he doesn't have tourettes at all. I am trying to make sense of this? I don't understand why a pandas individual would (tics get worse) if they are on long term antibiotics? woudn't the antibiotics prevent the tics or infection coming on strong? him on antibiotics when his on antibiotics his symtoms die dow and he feels "heathy" it stop him from sweating, make him feel more calm and tic less. Still doing investigating on this have a few ideas about whats going on but its tricky but I am slowly putting the pieces together and still waiting for blood exams to He was diagnosed with tourettes when he was 13 but I am begining to think it might be a somthing else that resembles tourettes come back! any suggestions welcome!
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Hi Faith, Yes he is not sick and perfectly fine. So I told him to pretend his throat hurt just to double check (I know this is not good to do and might offend some people in the post but I love him and he deserves the best in life :0) ) but we did it anyway as no one wanted to give antibiotics to us before plus many doc don't wanna hear anything about tourettes and alternative theories. I asked the doc to check some blood (with particular blood exams) work that I have been researching which seem to be connected with this issue (if my theory is correct I should find some things I'm hoping will appear in the blood test) Yes his tics have reduced, which I also had to convince the doctor to do some blood work - my theory does not revolve around strep but something else which I think I have found. but offcourse I could be wrong that’s why I'm keeping my lips closed till I am 100% sure!! As I don't want to mislead anyone or rise peoples hope. I know tourettes is a painful suject for some - my boyfriend has tourettes I am fascinated with this subject which I stared researching around 4 weeks ago and have read, talked and chatted to as many people as possible. I think I have found a connection with the tics and antibiotics but do not want to post my finding till my boyfriend does some other things and blood work I have asked him to do with the doctor. His sometimes stubborn but then he tells me about not having as many tics and he begins to listen again.... I want to see how much I can reduce his tics some more with some other things I have noticed that have improved his tics (almost overnight).....I wanna double check everything and make sure it was not just an accident or coincidence.... will try and keep you updated faith!
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Hi Faith, Thanks for your reply. Yes there is little research on Adult PANDAS caught from childhood. But I am not sure if he has tourettes or PANDAS so I'm doing some investigation. We have been together for 14 months. I noticed that when he was sick he tics were almost totally gone. I was like hey your tics have dmished quite dramatically for almost 4 days?! what the?! I have this bad cold! he would reply so I'm not sure if it was because he was tired and reduced his eye blinking/throat clearing. He was on antibiotics at the time. So I though maybe there could be a connection. Went to the doc yesterday and got some antibitotics. His healthy but I asked him to try this so that I can clearly see if his tics improved because he was tired or it was the antibiotics that worked. I also asked the doc to check his magnesium and TSH as he does sweat like crazy and hasa fast heart beat. Not sure if that will show anything but i have heard that many people with Tourettes had magnesium deficiency. I have also asked him about his tics pity he says he can't quite rember how it happened he told me it started with sniffling when he was 12, then throat clearling then when he was 16 more tics motor/vocal. So it was a gradual thing I think. His brother also has throat clearing tic. His tics are mild but he does have days when they can be bad - I can never predict if they are going to be a good day or not they change every day! He told me his dad had blinking when he was a child but then they disappered when he turned 31. So maybe it could be Tourettes or PANDAS not sure? Anyway still doing some investigation! We have an appointment with a DAN! doctor at the end of the month. I'm sure he has some sort of fungi or yeast thing happening because he has the dark circle and white toungue under his eyes which people say need nylasin or some other medicine to ficx up. For PANDA what blood exam should we be doing? What do you mean by tires? Thanks so much Faith! I appreciate your help. quote name='faith' date='Nov 2 2007, 10:50 PM' post='18405'] Sunflower, sure, that is certainly possible. It couldn't hurt to have the titers test if you can. However, I believe the PANDAS scenerio is usually where there is a sudden exacerbation of tics and/or OCD. Is this what you are suspecting for your boyfriend? Are his tics mild? Can he remember having sudden exacerbations of tics or is it always that way for him? Has he ever taken antibiotics or did he recently? If so, what was the effect? Faith
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I guess one assume that PANDAS is contageous to other children if they a predesposed to a movement disorder e.g maybe tourettes runs in their family grampa had it or had some other movement disorder and are in contact with the infect strep child? If the child catches the strep they their body could react to it like PANDAS? because they are predesposed. But for families with no movement disorder history I am not sure why a child would develop PANDAS...? Does anyone have a child with PANDAS with no family history of movement disorder? Any thoughs would be great as many doctors don't even know what PANDAS is!!
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I would try and work out if this is genetic based tic (tourettes) or PANDAS. Did you child have a infection and tic followed the infection? Or was it a gradual thing?
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Hi Could and Adult with tourettes actually have adult based PANDAS tics/Tourettes? For example caught PANDAS as a young child but was never effectively treated and then the tics continued into adult hood? Antibiotic theory... If an adult with tics/tourettes symptoms diminish while on antibiotics could this be a sign that this could be an undiagnosed PANDAS that has continued into adulthood and could possibly be treated with course antibiotics? Has anyone noticed if tics diminish while on antibiotics??
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Hi Could someone recommend what autism safe soap, shampoos and toothpaste could recommed ( I mean that are safe on the CFCF diet) no wheat, yeast or milk and no high salylates e.g oranges, apples, avacado. We are following the CF diet. I know we are meant to avoid mercury and perfumes and for toothpaste floride? Are there any brands you could recommend? I am currently in sydney Australia. Thanks so much!
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Hi, If a child has PANDAS based tics/Tourettes could other children catch PANDAS of this child it if he accidently caugh, kissesed or spat on them? (e.g accidenlty exchanges fluid with them) I don't quite understand if the child has PANDAS what prevents him/her from giving it to other children or family members if he is a carrier of strep bateria?
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Hello, Curing tourettes Please check out this website http://www.stankurtz.com/ which talks about autism, ADHD - as i want to relate this to tourettes. I noticed that many people which autism have somewhat similar symptoms of tourettes. Check out the video of stans son when he has a "mini seizure" which he calls it and then has many moments where he just stares into space. It sort of reminded me of the movie awakenings patients shakes where so severe that they became somewhat "frozen" in the movie awakenings and where only brought to life when medication and stimulation was brought into play. anyway what i am getting to is that could autism be a branch from tourettes? Could a tic be so bad it make the person freeze and stare into space for hours and hours? If autism can be cured (see the recovery videos) which I belive in some cases is sometimes more severe than tourettes (people with tourettes don't freeze up for hours on end - can communicate) why could tourettes not be cured? With diet, vitamins and treatment for antifungal etc treatments. With my partner i have noticed that milk plays a big part he also has similar symtoms to stans son e.g dark circle around eyes, white toungue We are currently doing our exams with a DAN! Doctor just started. As they treat and cure Autism so I am hoping this will work for tourettes. Done e.g urine, stool, hair and delayed allergy exams. A good source of info I have found has been austim sites which then i decompose and relate to tourettes (as there is little info on alternative treatments for tourettes) next is taking out Milk, castenine, wheat and high salicylates e.g fruits orages and vegetables olives out. Nasal Spray Also could someone tell me if they have tried the nasal spray promoted on stands site the mb12valtrex nasal spray. I though Gina was a good case to look like at eye movements are very simlar to a person with mild tic with touretts. Let me know if you have tried the spray and how did you go???
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Hello, My partner has touretts and has facial tics mostly eyes, shaking of head and clearing of the throat and would like to know or share with you what has been successful for you in getting rid or minimising tics? what things have you noticed make you tics worse? Does anyone know what type of magnesium taurate is good and which one to avoid? Where does everyone get their magneisum supplements from? what type of calcium is appropriate for Touretts? how about B vitamis? Fish oil? Thanks
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My Boyfriend Has Tourettes how can I help him?
Sunflower replied to Sunflower's topic in Tourette Syndrome and Tics
Hi Faith, thanks so much for your reply. His touretts only cam out when he turned 14 and they have been present ever since. He takes meds for his condition but has decided to come of them only a couple of days ago as he said it he was tired of waking up and feeling like a zombi. his torrets is mild head shaking, clearing his throat some eye twiching. Yes i have heard about magnesium taurate which is good to calm tics? what things should be avaoided in magnesium or other supplements? thanks flower -
Hi Everyone? What a great place to get some help. I'm a 26yo female and my boyfriend has taurettes. I love him very much and would like to help him find some peace with his tics. I notice that it fustrates him sometimes when I am about to fall asleep and I am lying in his arms as his is still having tics while I'm falling asleep. He is around 92kg. HIs 25yr. Could anyone give me any advice on how we could reduce his tics? Magnesium Turate? perhaps? I live in Australia and are having troble finding a store that has this. What doeses should he be getting of each vitamin? In what quatities and how often? He has mild vocal tics, clearing of his throat and slight head and neck twiching.. I hope theres someone that can guide us Thank you