Announcement

Collapse

Welcome to the updated and refreshed Tourette Canada Online Forum!

Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

We would like to thank the administrators and moderators who have dedicated countless hours to build and maintain the Forum. We look forward to continuing to provide a place for individuals and families affected by Tourette Syndrome and its associated disorders to get information, exchange information with others, and connect with the affiliates and support available across Canada.
See more
See less

New from Dad of Tim

Collapse
X
  • Filter
  • Time
  • Show
Clear All
new posts

  • New from Dad of Tim

    Hi, Our Tim was diagnosed with TS in 2003 when he was 10 - took a while to find why Tim and his older brother Alex were quite different but once the diagnosis came through a few clicks on the internet soon explained all those coughs, face rubbing, squeaks etc.
    Only a few months ago did Tim's TS progress to cause him problems (public swearing, hitting himself, head banging walls) and the consultant prescribed Clonidine but the internet made us wary of giving it to him for the possible side effects - weight gain, depression, dulling down etc. Tim is big boy anyway (rugby - like American football only better!) who loves his sport and has a fantastic sharp sense of humour that he uses to make himself popular at school and we didn't want to risk him losing these skills that give him self esteem.
    Instead of Clonidine we gave him Omega3, blue green algae, B3 and Lecithin - we only started this 2 months ago but the results were good and he has gone back to the twitchy, squeaky, grunting boy that we all knew before - but with much more control. He saw the new Batman film last night and only squeaked once!! Loads of facial tics he said - but who would know in the dark? :twisted:
    Two things I'd like anyone to comment on please:
    1. The vitamins and herbal stuff seem to work for Tim - do they for you and what is the long term situation?
    2. TS with Tim has been an up and down thing with good periods and bad periods - generally getting worser, unfortunately, until recently, thankfully, but how do you know if it is the drugs or the herbal remedies that are working or is it just part of the TS cycle - how do you know when to take away the drugs or the herbal remedies - if ever?
    Cheers from (a very hot and sunny) London
    David

  • #2
    New from Dad of Tim

    how do you know if it is the drugs or the herbal remedies that are working or is it just part of the TS cycle - how do you know when to take away the drugs or the herbal remedies - if ever?
    The nature of tics and their severity is that they wax and wane. For kids, the worst times seem to be early adolescent -- around the age of your son. It would be hard to judge if the herbal remedy is working -- you may have hit a waning of the symptoms.

    It can also be difficult to know when to discontinue drugs or other treatments. You son will probably be the best guide to this. He will know if his symptoms are causing him problems or if they have improved and he wants to try decreasing or discontinuing a medication or herbal remedy.

    Always check with your physician before decreasing or stopping a medication. Some need to be tapered off, while others can be stopped more quickly. Also, if you are using a herbal remedy, always let your doctor know what you are taking since herbal remedies can interact with other medications and cause problems.

    How did you decide on the particular herbal remedy you have tried with your son?
    Cathy
    Forum Moderator

    Comment


    • #3
      New from Dad of Tim

      Hihi, Thanks for the response - I found some useful information on latitudes.org to get the vitamin and herbal remedies that Tim is now given. He also gets no coke, white bread and anything made by Nestle or Haribo.
      Tonight we watched a film and Tim did nothing except pick his nose!! Sounds gross but so was his non-TS brother = me very happy :D
      Cheers
      David

      Comment


      • #4
        welcome

        Hi David
        :D Welcome to the tsfc bb(glad u made it). It'll b good to have someones input and experiences from across the pond.

        It sounds like u have a great son. My son will be 9 in a month and is kinda startin to show some signs of ts but nothin definate. Mine came on like a storm at 10. I think the herbal remedies and especially the omega 3 r good for everybody. I like to get my omega 3 from flax or hemp oil. Apparently its really good for the immune and central nervous system and we humans ate a diet high in omega 3 throughout our evoulution with fish & nuts but for the last hundred yrs or so its been very lacking with modern processed foods. I dont like Rx meds myself from bad experiences and from the research I've done into them. I prefer the natural herbals that we've evolved with.

        Anything that will add to a healthy lifestlye can only help in balancing out our systems. This is just my opinion there r a lot of Rx meds out there that do anything but create a balance :shock: . Best to u and ur son whichever route u choose in helpng him .

        Ciao for now

        Comment


        • #5
          New from Dad of Tim

          Hi David!

          Ok, first off, what, better than american footbal, no way, lol. Actually if I didnt ruin my knees from football I would have joined my city rugby team. But anyways, as far as medication goes, I tend to tell people to stick with what works. As you may read, I have taken clonidine and the side affects can hamper ones life (mostly being tired all the time) but I strongly recommend just doing what works. I dont want to get into a full discussion on meds and such but as you read the posts, you will see many people with many ways of "calming" the tics. No one way is best for everyone. The best thing to do is get the advise of everyone and info on every treatment and choose what you think is best. Whats good is that some solutions are not medicine so there is really no harm in trying it to see if it works. (for example, scott say he does meditation and it works great. I also try a light pshycological way to calm the tics) anyways, good to have you here and we look forward to seeing you again.
          The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

          Comment


          • #6
            New from Dad of Tim

            Hi David,

            well, I think giving Tim Omega 3s is a great idea, and it might be what makes the difference. I don't know about the algae, but don't think it can hurt, same with Lecithin. Everybody eating a western diet likely gets too much Omega 6, and not enough Omega 3s, and a balance between the two is important.

            My new doctor (a homeopath) just started me on special enzymes and Omega 3s (from fish oil, much more potent than from flax or hemp) a week ago, and I am noticing a huge difference already. My tics have lessened, the muscle pains (from fibromyalgia) are getting much better, and I have more energy.

            And even though it's true that TS tics wax and wane, I personally believe that the Omega 3s probably have something to do with the improvement, I am sure they have for me.

            So, if it works, keep giving it! And I personally would NEVER take Tim off the Omega 3s, why risk him getting worse again? It's not medication, but an essential supplement, and it actually doesn't interfere or interact with anything else (unlike some supplements).

            Ursula
            German citizen, married to a Canadian for 28 years, four daughters, one son, eight grandchildren (and one on the way).

            Comment


            • #7
              New from Dad of Tim

              David,

              Welcome to the TSFC Forum and we're glad you found us. You have introduced an interesting discussion on Omega 3, and it will be interesting to see the comments of Forum members. Looks like your query has already generated considerable interest.

              Perhaps you might start another discussion to acqaint us with the quality and quantity of support services for people with TS in Britain.

              We are always eager to learn what others are doing.

              hope you enjoy the TS Forum!
              Steve

              Dum spiro spero....While I breathe, I hope

              Tourette Canada Homepage
              If you enjoy the TC Forum, please consider a Tourette Canada membership
              Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

              Comment


              • #8
                New from Dad of Tim

                HI, Thanks for the responses - Adam: perhaps we should start a discussion on bad knees from football and rugby - that I do know about :!:
                We'll stick with what we currently give Tim - I think the the next big hurdle is puberty - he turns 13 next May - there is a lot of stuff I've read that indicate more fun and games around that time?
                In respect of the UK forums I am not really able to say they are much help as the content is very conservative - I often wonder if the sites are all sponsored by global drug companies as there is very little discusiion on alternative teatments to standard doctor's prescriptions.
                The old adage is still true - us Brits are 10 years behind North America when it comes to trying new ideas.
                Cheers
                David

                Comment


                • #9
                  New from Dad of Tim

                  I often wonder if the sites are all sponsored by global drug companies as there is very little discusiion on alternative teatments to standard doctor's prescriptions.
                  I doubt if you would find a site on Tourette Syndrome sponsored by a pharmaceutical company. One of the reasons there is virtually no research done on developing a medication specifically for TS is that the market is very small. Drug companies go after the big fish...arthritis, hypertension, high cholesterol etc.

                  What do you mean by conservative content?
                  Steve

                  Dum spiro spero....While I breathe, I hope

                  Tourette Canada Homepage
                  If you enjoy the TC Forum, please consider a Tourette Canada membership
                  Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                  Comment


                  • #10
                    New from Dad of Tim

                    Correct me if Im wrong david but steve, I believe he said conservative by saying they all give a basic and/or general background of TS and with the treatment. They dont offer a "different" veiw of TS or its treatment than from the physicians side. I too have very rarley read anything on the internet of Alternative treatments for TS without a deep detailed search. Every site seems to say (in a nut shell) "this is what tourettes syndrome is.................etc............... and here are medications to remedy it, the end". It seems that either a big drug company runs it cause they only offer meds for help or that know one cares and they just put a medication on there because, well they just dont have the time for a disorder that doesnt affect 20 bazillion people (yet those diseases seem to be preventable, yet I did nothing on my own to "contract" TS, I was just born) Again, if thats not what you meant david by conservative, I apologize but this is what I have noticed at least. Oh, david, my list of knee injuries is: 2 left knee dislocations, 1 left knee patella tendon strain, 1 left knee PCL tear (required surgury), 1 right knee dislocation and 1 right knee MCL stain. All required at least a month in a brace and physical theropy but my PCL tear needed surgurey and my right knee dislocation neede me in a brace for 2 months and physical theropy and if I do any more damge I will have to have a patella recunstructive realignment on both of my knees to correct the problem. So now I watch football alot, lol!
                    The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                    Comment


                    • #11
                      New from Dad of Tim

                      Hi Adam - sorry about the delay.
                      You read me as I intended - that there is a institutionalised approach to TS - in the UK at least - nobody wants to try anything that is off the standard approach. The TSA (UK) site won't even let you mention a link to another site and if you mention marijuana or the like your message is deleted!!
                      But surely the numbers of people with TS should mean big profits for the drug companies if they can crack a real cure as opposed to just pushing drugs intended for other treatments? One in a hundred is a lot of people in this world!!

                      But ouch to your knees You beat me feet down with that list of injuries. I don't blame you for watching football now. I have a friend who, like you, refused to be beaten by dodgy knees until his 3rd. consecutive hospitalisation with only one (part) game separating each injury.
                      We are a Rugby Union family (well not the missus :roll: ) and Tim is a very big and strong player (for his age) - can I ask how TS affected your playing football (if at all)? In Rugby Union we have stoppages every 30 sec to 2 mins and Tim uses these to have a little 'shake' - and if any of the opposition think they can have a laugh at his expense when he does then they soon get an 'extra special' tackle. Obviously within the laws :twisted:
                      Cheers
                      David

                      Comment


                      • #12
                        New from Dad of Tim

                        Actually, football was great for TS. It sounds weird but that major physical contact was almost a release for my tics. There were a few times I remember when I took myself out of a game due to TS but that was when my coach new of the disorder. When I got to high school, I didnt mention it so I sucked it up a few times when I was having a bad outburst. But I injured myself my junior year in high shool so it was very easy to tic when your on the bench :lol: But, sports in general almost seemed to help my tics. But now when I exersize, like running my tics hamper it. It seems that when I have a "reason" to be running Im good but if Im running for no reason they flare up.
                        The other day at a local grocery store, I saw a rack with books on it and one of them said, "pregancy for dummies"............

                        Comment


                        • #13
                          New from Dad of Tim

                          hi david,tiz little old me :D
                          yes we know only too well about getting our links deleted on a uk board dont we :x :roll:
                          i need to fnd out more about these omega oils,
                          anyone have any good links i can read ? ta
                          jo

                          Comment

                          Working...
                          X