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mythree

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Posts posted by mythree

  1. Hello Wagenhammer,

     

    Yes we are going to the Toronto Western Hospital in the Tourettes and Neurodevelopment clinic. We could not be happier with the success we have had at the clinic. Takes work and commitment on the part of the person with Tourette's but we have seen such amazing results.

     

    Good luck and hope your partner gets in soon!

     

     

    Hi there,

    is this the UHN Clinic at Toronto Western Hospital?

     

    I am wondering for the treatment ended up going?

    My partner is 26 and on the list to be there soon--how are the doctors?

     

    anyone else have an positive results?

     

    Hi Amy,

    We are having great success with the CBIT so far. We are happy and surprised by the results and most importantly my daughter is very happy with the changes she has seen too. I too read the book Nix your tics first, but like you - I wanted to go at it with professional help guiding us along the way. She goes once a week to the Tourettes and tics clinic at a hospital. She only gets to work on one tic at a time - and she learns a competing response to it - that replaces the big tic movement - with a small unnoticable and unpainful movement. It is really interesting - for we have spent years telling her to ignore the tics and not talking about them to some degree - but this actually gets her to focus on the tic that is giving her the most problems -whether it be a painful or embarrassing etc. But along with the CBIT is a lot of councelling on anxiety, worries, which I think has really helped her a lot too. I wouldn't have thought of her as an anxious child - but it seems more underlying for her. It is a slow process - going for one tic at a time, but I have noticed other tics she has have decreased as well. I think it is the first time in 7 years that we don't feel so anxoius about it for we feel like she has a game plan.
    We still use magnesium, multi vitamin and a pretty clean diet - but we've been doing that for years now.
    Are you in Canada or the US?


    Hi Lisa,

    I was doing some research on CBIT and came across your post. I would really appreciate your feedback on this technique. My dd is 11 and she is suffering from tics since the age of 9. I just purchased the book "Nix the tics" (haven't received it yet), but would be hesitant to try anything on my own without professional guidance, so I was looking into CBIT as a possible option to inquire.

    Regards,
    Amy

     

     

  2. That is great news Alan!

     

    Thanks for sharing! So great to hear of a treatment with positive results. Often once a person finds some success in their treatment I think they end up not posting anymore, so we don't always get to hear of the 'success stories' and that is why statistically it could look like a treatment hasn't worked for a lot of people. This is great to have another avenue to explore.

     

    Hope everything continues positively!

    Lisa

  3. I don't like the term habit either and it was never used for us when following CBIT at the clinic we went to.

     

    Dr Dunc speaks of habit reversal training and CBIT. We didn't do the 'habit reversal training' rather the "and the Comprehensive Behavioral Intervention for Tics (CBIT) program.

    I am sorry if I mislead in some way. I was just saying what CBIT was for us and its benefits for our daughter.

  4. Hello,

    My daughter just completed CBIT (she still goes for follow up appointments) with amazing success. We have tried everything since she was 5 and she started CBIT at 12 (she's 13 now) and the results have been life changing. CBIT - doesn't use the word habit reversal - at least with the doctors we dealt with - in fact they won't use the word habit - for that is so far from what Tourettes or tics are. CBIT is a program specifically for Tics (that is why it is called Comprehensive Behavioral Intervention for Tics) it is focused just on tics. Not reversal of tics but rather the awareness of them and taking control of them. We are in Canada and their are some hospitals here with out patient services that are within the Tourette''s clinics that have areas where the psychologists are trained specifically in CBIT. The book Nix your Tics is where we found out the hospitals that provided this service.

     

    Our daughter was a candidate for the program because the tics bothered her (so she was motivated to put the work into the program), she was aware of her tics (she could tell when they would happen before they happened - so she could control them in the Premonitory urge

    stage, and she was old enough to be committed to doing the program. My other daughter who has tics is only 8 and is not a candidate right now - for her tics do not bother her - so she is not motivated to work on controlling them. She probably has inattentive adhd - which means that she is not always aware of when they are happening either.

     

    Good luck!

    Lisa

  5. My daughter is 13 and a competitive dancer and she did the same thing. Would do spins and turns everywhere we were. It wasn't so bad when she was little, but when she was 12 and would break out into a turn sequence while walking down the hallway at school or in the line up for a movie - it wasn't so great. She used CBIT - just like she did with her smaller tics. She no longer does this, but rather if she has the urge will do a small hand motion that is not noticeable. Good luck!

  6. My daughter also had debilitating tics. She missed lots school due to the nature of some of her motor tics. Her vocals weren't as bad but still there. After doing CBIT for 8 months, we see very few if any tics. I had at first thought it was a wax and wan type thing and waiting for the flare up but she is still going strong. She seems so confident in the controlling of them - that I am starting to relax a little. I am hoping I can soon just sit back and relax soon and think of major tics being a thing of the past for her.

    But to answer your question. I do believe that she has successfully found relief for her tics. I am so so happy for her, but not quite ready to drop my guard and claim a victory. lol. But feel like that is actually in our grasp for once.


    However, I have another daughter who has tourettes and not a CBIT candidate at this time - so starting the journey with her now.

  7. Hello,

    My 12 year old daughter has just completed CBIT (behavioural intervention therapy for tics) - pretty much same jist as HRT. She has had amazing success at it. She has tourettes, adhd (inattentive type) and anxiety.

    She has had tics since 5 years old. We have tried, diet, vitamins, naturopaths, osteopaths, homeopaths, integrative doctors, metal detox, and a year of antibiotics for PANDAS treatment. All with various levels of success. However, she was accepted into the CBIT program in October and has gone every week to the hospital clinic that specialises in it. She also has to work on it everyday at home/school/dance. The clinic also does a lot of therapy etc to get at the root of her anxiety - which she/we didn't even realise she had anxiety. She has just graduated from the program last week. She is amazed at how tic free she is and how she can stop a tic if she feels it is going to start. With Tourettes - you can never cure the tics - but she is able to do a competing response when she feels the tic coming on to stop it before it becomes a noticeable or problematic tic. In turn, the need to tic has greatly reduced.

     

    She worked on a neck roll that would leave her in pain, a neck thrust, a back bending tic, a breathing tic, a facial grimace, arm snapping to name a few.

    She has done remarkable at it. We were told they usually don't start people on this program until they are an age to really understand it. I also have an 8 year old with tourettes and OCD but they said she was too young to start the habit reversal properly. If started to young - it could cause more anxiety.

     

    It is a lot of work - but in her words SO worth it. She is the happiest and most carefree I have seen her in years. We went to a hospital in Toronto, Ontario to work on it.

  8. Hi Amy,

    From what I understand there are 3 major clinics that have been trained in it (in ontario) London, Ontario , Toronto and probably closest to you Ottawa.

     

    My pediatrician didnt even know of this clinic. It was recommended to me from another tics specialist / and a teacher who has tourette. I think in nix your tics book he has listed clinics in Canada who practice it.

    Good luck!

  9. Hi Amy,

     

    We are having great success with the CBIT so far. We are happy and surprised by the results and most importantly my daughter is very happy with the changes she has seen too. I too read the book Nix your tics first, but like you - I wanted to go at it with professional help guiding us along the way. She goes once a week to the Tourettes and tics clinic at a hospital. She only gets to work on one tic at a time - and she learns a competing response to it - that replaces the big tic movement - with a small unnoticable and unpainful movement. It is really interesting - for we have spent years telling her to ignore the tics and not talking about them to some degree - but this actually gets her to focus on the tic that is giving her the most problems -whether it be a painful or embarrassing etc. But along with the CBIT is a lot of councelling on anxiety, worries, which I think has really helped her a lot too. I wouldn't have thought of her as an anxious child - but it seems more underlying for her. It is a slow process - going for one tic at a time, but I have noticed other tics she has have decreased as well. I think it is the first time in 7 years that we don't feel so anxoius about it for we feel like she has a game plan.

    We still use magnesium, multi vitamin and a pretty clean diet - but we've been doing that for years now.

    Are you in Canada or the US?

     

     

     

    Hi Lisa,

     

    I was doing some research on CBIT and came across your post. I would really appreciate your feedback on this technique. My dd is 11 and she is suffering from tics since the age of 9. I just purchased the book "Nix the tics" (haven't received it yet), but would be hesitant to try anything on my own without professional guidance, so I was looking into CBIT as a possible option to inquire.

     

    Regards,

    Amy

  10. Just curious but ds has been doing this tic for several months. It's not as severe now thank goodness but caught him every now and then . But he was obsessive with lifting his shirt to check on belly button to make sure it's not bleeding according to him. We have talked about it and he feels like its going to bleed. I purposely have touched it gently to prove him wrong and have discussed it with him but he laughts when he does it and saids it is a habbit.

    Mar

     

    Yes, one of my daughters does something like this - but her specialist said it was an OCD behaviour. She also has tics.

  11. Sorry I can't reply with any experience regarding CBIT, but I'm very interested in it, and would love to hear how you go with your daughter. My daughter is about to turn 10, so it may be a little early for her, but I think she would be capable soon. Good luck.

     

    Thanks, I'll keep you posted! She goes every week for about 12 weeks and then every other week etc. So hopefully we'll know something soon.

  12. I have always been interested in CBIT but wanted to wait for my daughter to be old enough to give it a good try. She is 12 now. I discovered a Tourettes clinic in Toronto and we were referred there. She was diagnosed with Tourettes "officially" even though we have known that for sometime. But the offical label had her qualify for CBIT. We had our first session yesterday - just an introduction - but it sounded very promising. I guess after 7 years of doctors saying 'she has tics' and then sending us on our way (except for our integrative doctor) it was nice to have doctors actually have an action plan for us that didn't involve medication. Anyone tried this themselves or with their kids before. This program mirrors the same approach I would say as Dr Duncan Mckinley's book "Nix your tics".

     

    Thanks,

    Lisa

  13. Thanks everyone for your feedback.

     

    She only took one dose in the a.m. and then she has the rash around 9pm. She is allergic to cephzil and she also got a rash from penicillan (this was years ago for ear infections or something like that). She is by far a rashy kid. I am anxious it is the zythromyacin - for I was so excited to get her started on this and hopefully she could start to heal. I guess I am worried that if it is an allergic reaction and if it gets bad and I have to take her to the hospital - well her pediatrician is not aware we are seeing another doctor for her tic/ocd etc. She does not support any of the alternative type treatments and has never heard of pandas. I will try to get through to the prescribing doctor.

     

    Are there other antibiotics beside zythromyacin to treat this?

  14. Hello everyone,

     

    I'd like to introduce myself. I have an 11 year old DD and we are in Ontario, Canada. We have been over at the tics and tourettes board for quite awhile. We have been seeing an integrative Dr for my daughters Tics, inattentive ADHD and occasional OCD. We have done well minimizing them with supplements/vitamins and diet. However the tics are persistent. She is always getting strep infections - all my kids are - and many over at the Tic/Tourettes board have suggested PANDAS to me. At our last appointment with her DR who deals with all this (not her pediatrician) he noticed that her ASO had tripled in 3 months and that it is always above average. He suggested PANDAS to me and I was so excited to have a dr that finally knew what it was! And mentioned it to me before I could ask him. Interestingly my daughter has had a major major tic flare up - so it is neat to see her ASO was so high to.

     

    Anyway - I am looking forward to going through all the posts on this board and learning more about PANDAS.

     

    Question: My daughter was put on azythromyacin. She took it this a.m. and by about 8:30 had an itchy rash on her. I was so upset for i was so excited about her trying out the azythromyacin. Has anyone else's child ever had a rash from it? Do you think it caused the rash? If I keep her on it - do you think the rash would go away? I gave her Benadryl and the rash was gone an hour later. thoughts?

     

    Thanks! Lisa

  15. Hello,

    I have been posting on the tics and tourettes board for some time now. We had great success with supplements, diet etc but still constantly have these flare ups of tics and mild ocd type behaviour. As I have posted in the past, my daughter has reoccurrent strep infections. I have always wondered if there was a connection. Our pediatrician does not believe in alternative approaches at all.

     

    We see an integrative doctor as well who has been wonderful. Anyway - I went for our 3 month check up today. I was so anxious to see him for my daughter is in a major tic flare up. A debilitating series of tics. When I got in the office he looked concerned as he was looking at her blood work. Before I had a chance to say anything he said 'I think we are dealing with PANDAS. He has been following her strep titer for a year now and he said it has been rising and the differece between 3 months ago and this week - it has tripled! So we are taking a course of action with PANDAS to see if we can solve this. It was interesting to see such a chance in her bloodwork as well as such a chance in her tic behaviour at home. It seemed to really co-relate.

     

    Thanks to everyone who suggested the PANDAS connection. I'll still be on this board too. But I will head over to PANDAS too and I am hoping to get some great information over there like I have here.

    Have a nice weekend!

  16. My DD's tics are off the chart right now. She was doing well for quite awhile. She is 11 and is currently doing a sniffing tic, an arm snapping tic, a neck roll, a nose and eye tic and one where she keeps hitting herself in the face. she is also doing a tic where she is constantly waving the air infront of her face. Also if she knocks her elbow on something she mmediately has to knock it again and then do the pattern again over and over a few times. she is still on all her supplements. We added in methyl B12 and folapro about 4 weeks ago - to help her with her inattentive ADHD. I removed her omega 3's and vitamin D when her tics started to ramp up again. I have no idea what to do?? I start to question if all these supplements and vitamins and diet are doing anything or if the good times aren't just the normal waxing and waning of tics. ugh. Any idea what else to try.?? We have increased her magnesium to help, but nothing is putting a dent in them..... She is exhausted by the end of the day. When she kept hitting herself the other night I was wishing I had a sedative to relax her for a few hours and give her some relief!

    I still often wonder about PANDAS since she has strep infections all the time. But I can't find anyone who will support it in Ontario, Canada.

  17. Alan,

    Can you take this medication only as needed? So only if there is a big flare up and it is causing distress you could take it then? Does it make them tired? Please let me know how it goes for your son.

     

    Al the best,

     

    Hi Mythree

     

    I don't know what to say. It's got to be very hard to hear that from your daughter.

     

    as for the medication, I just don't put that much weight in lists of possible side-effects. It seems like every pharmaceutical commercial has a huge list for every medicine. I trust my son's pediatrician. She agrees with the neurologist that it is safe. We are starting at a very low dose. And I will only be giving to him when he really needs it. If there is an adverse reaction, we'll stop.

     

    Best

    Alan

  18. Hi Al,

    My daughter is 11. We have been following our own regime that was given to us by an MD that also specialises in autisim, adhd - but with natural approaches.

    She has been doing great on the supplements. Tic wise at least. But her adhd improvement has hit a standstill.

    I understand your frustration. It is so exhausting and it feels like we live on a rollercoaster - analysing everything she eats or doesn't.

    No, I haven't done Bonnies' vitamins - but rather followed those from the specialist doctor. We added methyl B12 and Folic acid into the mix as well (for her adhd) so perhaps that is what is causing the outbreak in her tics.

     

    Yes, my daughter does have fewer tics in the morning - but I have always assumed it is because she isn't as tired. I think when I see her at the end of the day - she is worn out from suppressing them.

     

    I have never considered giving medication to my daughter.....until now. I understand where you are coming from. Sometimes I think it should be quality of life in her young little day and I dream of her not having to worry about tics and adhd etc etc. I feel bad for her analysing everything she eats and being on countless elimination diets and supplements and vitamins. The side effects of the drugs that they list terrify me - so that is why I haven't done it yet. But sometimes I envy those people that have taken the plunge and it has worked out for them. We have been going the natural/diet/supplement route for about 6.5 years now. Today she asked me what it was like to be 'still' she asked me how it felt not having to worry while I was having coffee with my friends if I would make weird movements or have to think about holding them in. She wasn't saying it in a nasty way - more just inquisitive. It just really hit me though.

    I wish you all the best. Hang in there. Sending good thoughts to your son too - that this will pass...

     

    Hello,

    I was about to post the same thing - but then I saw your post. My daughter's tics which have been really good for quite awhile have exploded as well. She waves her hand in front of her face over and over and over like she it batting at a fly. She can't get her work done for she has to keep doing it! It is so frustrating for her. She also came home today complaining of a headache and her throat feeling weird. I immediately thought strep and was almost relieved at the thought that there was a source for her tics - but the rapid strep came up negative. The doc gave me a prescription for Biaxin in case she got worse in the next few days. I wonder if I should give it to her?

    Interestingly as well - her inattentive ADHD has been bad lately. So we doubled her her fish oils and vitamin D. I wonder if that is the problem. I have heard others say that vitamin D and fish oil can increase tics - so maybe she too now is reacting to it?

     

    Good luck with your son. I am glad things aren't as bad as they were. I guess we never know what tomorrow will bring.

     

    Hi Mythree

     

    How old is your daughter? Personally, I'm pretty bummmed about this. I had hoped it wouldn't get this bad. And I was a bit premature in thinking they were improving today. They are a little better than the last few days, but not much. The thing is, they were fine in the morning. Then just b4 he left for school, I saw a few tics. And apparently they continued to get worse.

     

    Does your daughter have fewer tics in the morning? I wonder what I can glean from that. For one thing, I'm going to skip his morning routine of fish oil, probiotic and vitamin and see what happens.

     

    I too don't know what to do about the fish oil. We started giving it to him about 1.5 years ago and it really helped. Do I switch to flax seed oil? Increase the amount of fish oil? Vitamin D is another mystery. 10 months ago or so, he started ticcing more when we gave a multi with 400 iu. But maybe it was a coincidence.

     

    Are you considering the Bontech products? I am, but I'm confused about them. It's overwhelming. I wish a could find a doctor that would direct me through this.

     

    I read somewhere that TS patients have a greater incidence of Migraines. That may explain the headaches. My son was complaining of headaches awhile back. We suspected migraines.

     

    I've got a script filled for Clonazepam. We are starting at 0.25 mg as needed. My doctor assures me that it's safe and has been around quite awhile. But it can make him drowsy. I may give it to him tomorrow, but first I want to see what happens when he doesn't have his morning vitamin/supplements.

     

    I wish you and your daughter the best.

  19. Hello,

    I was about to post the same thing - but then I saw your post. My daughter's tics which have been really good for quite awhile have exploded as well. She waves her hand in front of her face over and over and over like she it batting at a fly. She can't get her work done for she has to keep doing it! It is so frustrating for her. She also came home today complaining of a headache and her throat feeling weird. I immediately thought strep and was almost relieved at the thought that there was a source for her tics - but the rapid strep came up negative. The doc gave me a prescription for Biaxin in case she got worse in the next few days. I wonder if I should give it to her?

    Interestingly as well - her inattentive ADHD has been bad lately. So we doubled her her fish oils and vitamin D. I wonder if that is the problem. I have heard others say that vitamin D and fish oil can increase tics - so maybe she too now is reacting to it?

     

    Good luck with your son. I am glad things aren't as bad as they were. I guess we never know what tomorrow will bring.

  20. From what I understand they can't really measure vitamin E. But if you are deficient in Vitamin D than there is a good chance of being deficient in Vit E. I will look for my old notes from the doctor. Regardless, I have met other people who have used Vitamin E for large motor. My daughter no longer takes the E, for she doesn't do the big movement tics anymore.

     

    Usually if you have low vitamin D levels - you also have low vitamin E levels.

     

    I've never heard this before. Are they related somehow?

  21. My daughter who is 11 now was put on 7000 IU of Vitamin D by her doctor for tics. She was put on this when she had just turned 10. He vitamin D levels were sooo low. Usually if you have low vitamin D levels - you also have low vitamin E levels. There is talk that they are using vitamin E for large muscle movements such as those associated with MS. The vitamin D which was part of an entire regime of vitamins/minerals really helped with my daughters large motor tics. She now takes 1000 IU's a day.

  22. When my DD was little like yours we just told her we were looking into 'allergies'. That maybe she was allergic to something. She had so many friends with allergies that had to say 'no' to cake, or couldn't eat gluten etc etc for various reasons that when we gave her a reason for her tics (even though we didn't really know if it was caused by allergies) she seemed much calmer. She used to have itchy skin at the time too - so we would often say we are eliminating this food for your itchy skin or something like that - so it wasn't always about the tics. We just acted like they weren't a big deal (even though we were terrified inside) and handled it like we would any other condition we'd go to the doctors for (in front of her). At the majority of appts she would sit in the waiting room while we discussed everything with the doctors or nutritionists etc. So it wasn't in front of her.

    Good Luck!

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