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Everything posted by mythree

  1. Lynn, I know how you are feeling. I am tired of every waking moment being about her tics or lack of tics. Less tics seems to equal a good day for me, I could be having a great day and she walks in the door and she has a new tic that I deem 'not a good tic -- as in really noticable' and my good day is over. Also the daily investigation of food, supplements, vitamins etc etc. Anyway -- not going to complain too much LOL, for I know there will be an upturn. She has had tics in the past where she snapped and thrusted her arms so violently that she was unable to keep her pencil in her hand - it would keep flying across the room - so she was unable to do any school work. Those came back once, but not as severe. She also had one where she would keep thrusting her back into an arch so hard, and then go down on all 4's into a cat stretch. She did it so violently that she had to have a series of MRI's, for they thought she had a fracture in her spine. I didn't know that was a tic at the time and had no idea what was going on. so i guess, the coughing and sniffing tics are very 'good tics' in comparison to those. I have to keep telling myself that this too shall pass. Good luck to you. Lets hope both are children start to go back into the good place that we were enjoying so much.
  2. My daughter who is 10 has been doing very very well with her tics. We hardly noticed any tics and we were very excited that perhaps the supplements/vitamins were working. Just this last week or so she got a chest infection (they didn't test for strep - but I wish they did)and then got the chicken pox. She is on Biaxin. The illness (coughing, sniffing etc) has cleared up, but now she is doing a repetitive cough over and over, I can hear her throat getting raw. She thinks she is still sick. I can tell the 'real' cough has turned into a tic. She keeps lifting her hand to her nose and sniffing over and over like when she had a runny nose. Has anyone else had anything like this?? Almost like she got into the pattern when she was sick, and now the sickness has gone, but the pattern of coughing and sniffing have stayed?? UGH. Also if she knocks one elbow on the table, for example, she immediately knocks the other one. I guess just keep plugging on with the vitamins and supplements - just curious if anyone else has had anything like this? Thanks! Lisa
  3. What is this? My daughter had an MRI of her spine and brain when she had some huge motor tics, to make sure there wasn't more going on.....
  4. Oh my goodenss. My daughter who has been doing well - has become much more tic'y lately. I also notice her tapping things rhythmically. I thought it was the excitement of Halloween . But she too has had silly bands wound half way up her arm lately. I never even thought of that!! I will get her to take them all off and give her a epsom salts bath. Thanks for that info. Lisa
  5. Yes absolutely! My daughter who is 10 had blood tests and she was very deficient in Vitamin D (as many of us are). She was put on 7000 IU's a day - and was monitored by the doctor and regular blood tests. Her levels were in the high normal at her last blood test (Sept) and she had started the 7000 in June. The doctor has now reduced how much Vitamin d she has to take daily. Her tics are so under control right now. She is also taking other supplements - but the doctor we saw felt strongly about the Vit D and Vit E (if you are low on D - then you are often low on E as well) connection to tics. He is also a DAN doctor and he mentioned that a lot of doctors are now researching the relationship between low Vit D and autism and adhd. Lisa
  6. Thinking of you and praying for all of you. I understand the pain you are going through - watching your son's tics flare up again. Hang in there. A good day is just around the corner. Lisa
  7. Hi, Great news about your sons tics!!! Very exciting. My daughter is on spectrum complete by Kirkman. It is also free of sweeteners, additives, colours etc - it is gluten free and cassein free as well. The DAN doctor we saw (she does not have autism) but he is DAN certified recommended it. Your post gave me chills - because my daughter is also in an amazing tic free period. I know we have communicated a lot in the past - so I thought how strange/funny that was. She is also much more attentive and focused (she has inattentive ADHD) BUT so moody and sad in the evenings as well!! She cries at the drop of a hat. She seems fine, but then gets really sad. She talks a lot about her 'worries'. She has left me notes on my pillow at night saying she was having a hard time with friends or school or whatever. I did talk to her doctor about it - and he said it is a huge age thing - when they hit around 9/10 years old - some kids are prone to get more anxious. He also said that perhaps all the vitamins/supplements she is on could be making her much more aware and not so inattentive, and she may be realising things more, noticing that she is not the 'same' and having difficulties with it. I think she is also anxious that the tics are going to come back bad. I think she is realising how nice it is to be tic free right now, but I think she is aware now how bothersome it is to have tics. Someone recommended Bach's "Rescue Remedy' to me - for anxious periods. Also Boiron 'Quietude' for before bed in the evenings. I will totally try the cantaloupe and limes too. Good luck and such great news about your sons tics (or lack of them)! Now to figure out the moody/sad stuff!!
  8. Hi Nola, I know how you feel. I think everyone on here does. I still have a hard time saying my daughter has Tourette's. I usually say a Tic Disorder - because Tourette's seems so final and so scary to me. But in reality that is what she has and it doesn't matter what name is given to it - it is all about helping your child. My daughter has done the breathing noises too. I found it scary - for I was scared she'd hyperventilate. Is your son feeling self conscious about this? Do you mention his tics to him? I find it is best just to ignore them. My daughter is less anxious about them if I ignore them. She hasn't had a problem with teasing at school (she's 10) but this year has been much more difficult. You should probably speak with the teacher and tell them what is going on. That way if he is having a bad bout of tics he could excuse himself and do them in the hallway. My daughter was scolded last week for humming constantly. The teacher about lost her mind and told her to stop once and for all. The teacher knew she had tics- but did not know humming could be a vocal tic. She felt horrible about it after I told her. So many teachers do not know too much about tics or tourette's etc. Hang in there. Check out the boards for different supplements and diets. Ask away any questions! Things will get better soon. Lisa
  9. Thank you. I will do a search on this in the past threads. Thanks! Lisa
  10. Hello, At our last appointment for our 10 year old daughter, the doctor mentioned her GGE or IGE (can't remember) levels were high. He said this is often due to allergy or infection. Since she was antibiotics a lot when smaller due to chronic ear infections, strep infections etc, he wants to give her a course of anti-candida pills. He said she'll feel lousy for a few days with the die off of the yeast - but he has seen great results for children with tics, ocd, autism etc. Anyone else tried this path? He Strep titer was also very high - so he is re-testing that, and he said that will be the next thing we explore - after the candida trial. Just curious if anyone has any experience with candida and tics (vocal and motor)? Thanks! Lisa
  11. Kelly, These are great questions. I have wondered the same things myself. I look forward to some people being able to give some answers to your questions. I too have done a huge diet change and we are supplementing with a lot of different things recommended by a doctor. Our DD who has struggled with this for 5 years seems to be really seeing changes in her tics (as well as her adhd). Her tics have decreased dramatically - but like you - I do not know if this is because of the changes we have made, or if it is just a waning period. I am scared to get excited, for I have been there before, and the blow is so much harder when it starts up again. Thanks, Lisa
  12. Thank you all for your replies. I have learned a lot from them. We completed the dairy elimination diet and the re-introduction. We did not see any changes from that. We are going to do the additives/dyes/hfcs etc next. Thanks! Lisa
  13. Thank you for posting this. It came at a much needed time. My DD is off to school tomorrow. I am in that 'dark phase' right now. Trying everything and trying to track down any or every cause. Nervous when I see her after school that she will be ticc'ing like mad. I like how you said you can't get these days back. You are so right. I spend so much time worrying that the days are flying by. Thank you for your encouraging and hopeful post. I wish you and your son all the best. Lisa
  14. My DD 10 has been taking the L-Carnitine (500mg)for just under a month. She still seems to have her vocal tics. However she also has ADHD (inattentive type) and I have noticed a difference in her ability to focus and stay in the moment. We recently switched to the L-Carnitine Aceytle (sorry about the spelling) 250mg in the A.M. and another 250 around 3:30 and she seemed more spacy on that one - so I think I will stick with the L-Carnitine Tartrate - which we were using. I am hoping it will help with the vocal tic. Her Motor tics have been greatly reduced - in fact I haven't seen any in about a week. She is off dairy right now and she is on other supplements and vitamins as well. Good luck Lisa
  15. Hello, My daughter is 10 and about 62lbs. We are giving her about 200mg now, but I am going to increase it to about 400mg. We use magnesium glycenate. That is amazing that you are seeing positive results with the diet change. My daughter has been dairy free for 6 days now and we have not seen any difference at all. So frustrating... Glad to hear it is working for you though. Perhaps Gluten will be the next we eliminate.
  16. Hello, Does anyone have any information using Methyl B12 for tics? My daughter also has inattentive ADHD. The alternative Medical doctor we are seeing said that if all the supplements we are using do not reduce the tics, he will start on her on Methyl B12. I feel like the supplements are helping her ADHD, but I have not seen any real difference in her tics. Anyone with any experience with Methyl B12? Thanks!
  17. Thank you for your reply. I didn't know you could buy magnesium cream. Did it work for your son? Did you just put it into any body cream you had at home - or a special kind? Thanks! Lisa
  18. Hello, My DD (10) has a bad neck rolling/thrusting tic which is quite aggressive. She is in so much pain from it.Any suggestions on pain relief for it?? She is only 61 lbs and still uses chewable tylenol/advil for she can't swallow pills yet. All the chewables seem to have crazy amounts of colours and additives in them - we don't want her to have. I tried giving her an epsom salt bath, it worked for a little while. Any ideas on pain relievers without dyes/additives etc? Thanks!
  19. Hi Christy. I know exactly how you feel, when you talk about that sick feeling. I can be having a great day and then my daughter starts a new tic, or goes back to an old one and my day comes crashing down. We have been battling these for years, but everything has just gotten worse lately for she is now very aware of them and very upset by them. So now we are doing everything we can. I feel like I have been living in a state of anxiety for years now. 1. I took her to a pediatric neurologist - to rule out that there wasn't anything physical going on. She had an MRI done - to make sure that there wasn't something causing the tics. He did mention medication as an option, but we knew we weren't going that route, so I was just happy to have him say she didn't have a tumour or something on her brain. 2. We took her to a doctor in the States (I am in Canada) and he is medical doctor but also specialises in natural treatments - he is very well known for his work with autistic kids, ahdhd etc. He did masses of blood tests - and it came back that she was quite low on many vitamins/nutrients. He also did a hair analysis of the toxic metals and minerals etc in her system. 3. My daughter also has inattentive ADHD so we are seeing him for that too. She currently takes in the a.m. Enzymes 1000mg of Vitamin D (she was very deficient - and she has her blood checked regularily) Vitamin E Spectrum complete multi - powder form L- Carnatyn 5mg of natural source lithium (just started today) Omega 3's pre-pro biotic P.M spectrum complete again Vitamin E Magnesium glycentate powder Enzymes We also rub on transdermally Glutathione twice a day As of today we are eliminating dairy. After that trial we are moving on to eliminate all the artifical stuff, HFCS, colours etc. My thinking is to remove one food group at a time - so we really know which one is effecting her. So far with all the supplements I have noticed a huge improvement in her ADHD. Not so much yet in her tics. Her motor tics are much smaller - but they are still there. she still has her vocal tic too. Good luck. I know how hard this all is.
  20. Hello All, It is so nice to hear everyone share their feeings about this. Makes me feel less guilty about getting so upset about the vocal tics. We went on a hike up North with our 3 daughers and the oldest who has a vocal tic was making this noise for the entire 2 hour hike. We couldn't enjoy any nature sounds or any peace in quiet for this tic was driving me crazy. None of us mentioned it to her, but it was very apparant. It wasn't so much the noise itself that was upsetting me so much, rather feeling like I was at sqaure one again and going over inside my head everything she had eaten/touched/smelled/experienced etc etc, to make them flare up so bad. Sometimes I feel that this is all I ever think about. If I notice her do any type of strange motion or noise, my stomach goes in knots for I wonder if that is the beginning of a new tic. Her little sister started making a gulping sound when she is talking lately and I am trying to ignore it, for I just can't wrap my head around another child having this. UGH! Thankfully there is support here, and it feels so so much better just knowing others are going through the same thing. Lisa
  21. Thanks Megan! I have ordered the book and I am looking forward to it arriving. The doctor we are seeing - suggested eliminating all dairy first. Which I planned on doing again starting Monday. (We did it once about a month ago - and did it strictly for two weeks. That is what he suggested. Then we added dairy back in. I really didn't see any change. But, now I am thinking I should have done it longer. She is still totally off of milk, yogurt and cheese, but I haven't been checking other food for casein. I was planning on Monday to go totally dairy free and try it again. Would you suggest that - or do you think the artificial colours etc is the way to go first? We have always been concerned about sugar or candy or perhaps it is the dye's etc in the candy. This has been for about 6 years we have really had to restrict how much she has, for if she eats a packet of skittles etc without much in her tummy, we will really notice a difference behaviour wise - much more spacey, out of it, will get weepy, sometimes a bit more aggressive and often will actually soil her pants. Candy is easier to cut out - but I guess I need to look at cutting out all artificial colours/additives etc. That seems so overwhelming to me - for I dont' really know how to identify them all. She doesn't eat junk food, but i have heard that even oranges have colours added to their skin to make them more orange. So it is all the hidden colours etc that overwhelms me. Do you have your son on supplements at all? Thanks for your help. I really appreciate it.
  22. Yes, we have had no luck with liquids. We use the Buffered Magnesium Gycenate Powder made by Kirkman. My daughter has taken this for a long time and doesn't even notice it if I mix it in her juice/applesauce. I give her this before bed to aide in sleep, (as well as for her tics and adhd). It has a mild fruity type taste. Good luck.
  23. Hello, I am new to the vitamin/supplement route. I had mentioned in a previous post that my DD has vocal and motor tics. She started with motor when she was about 5 and have had them through out the years. We are really trying to get things figured out this last year and a half - for she is now aware of her tics and quite upset about them. They scare her - the idea that her body is doing something that she doesn't control really bothers her. As I mentioned she now has vocal tics too - a sort of humm/grunt. On the advice of a doctor we saw we have her on the following. He based this on blood tests and hair analysis. She also has inattentive type ADHD. Enzymes High doses of vitamin D High doses of Vitamin E Spectrum complete multi (double dose) magnesium L-carnitine pre-pro biotic. Omega 3 oils (though I stopped these incase they were making the vocal tics worse) She currently takes 500mg of L-carnitine in the AM. I have noticed quite an improvement in her inattentive ADHD symptoms since being on this. But no change in vocal tics. I have seen other posts mention that L-carnitine really helped the vocal tics. Should I be giving her more L-carnitine in the afternoon? She is 10 years old and weighs 60 lbs. Any other supplements you think I should add? Thanks for any help. I am so happy there is a board like this, so I don't feel so alone. Lisa
  24. Thank you both for your replies. I am happy to get the name of the book - it'll give me somewhere to start now. It is so nice to find a website like this. I don't know anyone that really understands what it is like to have a child with tourette's. It is nice to 'meet' others going through the same challenges here. I am so desperate to help my daughter - so I will check out the information you gave me. Thanks! Lisa
  25. Hello, I am new to this forum. My daughter is 10 years old and has vocal and motor tics and ADHD (inattentive type). We have her on a bunch of different supplements and vitamins and I am noticing a difference in her ADHD symptoms. She is more focused, less day dreamy and staying on task better. However, her tics are still bad. She is getting very upset about them. I believe that candy etc impacts her ADHD a lot, so I am sure it must impact her tics as well. I have tried eliminating dairy with minimal results. My question is - is there a book or a list of dyes/ sweeteners etc etc to follow to do a total diet overhaul. I don't even know where to start, and would love to follow some sort of plan or book. I am feeling so ovewhelmed by it all. She has hit an age where it is all becoming apparant to her, so I am not just worried about her tics and adhd, but I am worried now about how she is reacting and dealing with it all. Thanks!
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