lynnie1264

/hi everyone. A friend of mine is a bit concerned that in last 5 months her 13 yr old son has developed what seems to be tics. He clears his throat, has a head/ neck jerk, hard eye blinking and has developed a stutter. When she told me about this she was not aware that my son has tourettes {i don't see her often} but I said I would try and find out if the fact that he is 13 would make TS less likely. I know there is the chance that he has had very minor ticks that went unnoticed til now, we're just wondering what others think. Her DR doesn't know much and puts everything that's ever wrong with him down to hormones. She has read so much that says the onset is usually younger. I would appreciate any ideas here. Thank you, Lyn.

Hi... Thank you so much for the information, lets hope that this is a new break through . Please keep us posted on any new info you find out. Lyn.

Hello Pamela Sorry to hear you're feeling like you are. Just remember that your daughter may not have the same as your son, hey, but even if she does you'll get there!!! I know the "here we go again" feeling. Although my son is my first with TS, we have had various medical issues/ problems and personal issues over the years with the other kids... when this happened with my son I just felt like yelling to the sky "How much more do you think I can take!" as if we were being punished for something. We have to remember that we can be strong enough for whatever is cast our way, and we always find the strength when it comes to our kids. You're doing a great job, and your kids are lucky to have you for their Mum. Feel free to vent whenever you want, I think we all need to do that. {I know I sure do, ha!} Take care, Lyn.

Hi all!!! Just thought I'd write something about how my 8 yr old son feels about TS. As I have mentioned before his is classed as mild... thought as usual every day can be different. At first he was abit confused as to why his neck was moving, and why his face would contort sometimes. After his diagnosis he seemed to accept that it was ok, our pediatrician was great and didn't make a big deal of it which is good. My little boy thought the Dr was cool. When we decided to eliminate certain things he was fine about it. However I went into his room that night and he was rather upset. I asked what was wrong and he started to cry and said "I hate having tourettes." Immediately I thought the worst, oh no it's really affecting him now I figured. My heart was breaking... until I got to the bottom of why he hated it. It was because he had to eat special food... I felt relieved to say the least. The tics weren't the issue. His other worry was that he would "have to get on a plane and travel to the other side of the country and stay in hospital" without me there. He thought that from watching real life medical shows where kids were really ill, like cancer etc, and he thought that would happen to him. That's when I realised that most of his worries were coming from things he didn't understand... so I explained to him {I thought I already had} that TS didn't require him to ever be in hospital, maybe some Dr visits, and that he certainly wasn't going to die or lose his intelligence. {and he is pretty smart} He went to sleep a happy boy after that. A week or so later his grade had a special under 8's day at school. As a I watched him making some kind of food bracelet I notived the little girl beside him was displaying a few ticks too, they were obvious. I asked him later if he knew that girl and he told me it was his friend and said "did you know she does funny things with her face too?" Turns out there is another boy in his class who has arm tics... the wonderful thing is that it had never come up in conversation, it wasn't important. None of these kids get teased at school, it's just who they are. I thought that was beautiful. When we were having morning tea the same day I overheard my boy telling his friend "you know when I do that thing with my neck? ... well that's my tourettes." He was smiling as he said it with a mouth full of food {manners? } and his friend says "cool!" Sorry for the ramble on but I just wanted to say that we may think our kids understand TS but we need to make sure they know they won't die from it or anything like that. Also I wanted to let you know that isn't always a huge deal to our kids or their mates. We {or I} can get so caught up in how we feel that we can under estimate our kids . Take care everyone, Lyn.

Hi. To me this seems more like a virus, reaction to something. Did he eat anything out of the usual at his party? Considering how he's been sick aswell I would think it's more something like that. {not that I know that much! } Hope all goes well, please let us know... Take care, Lyn.

Hi everyone. Regarding the no family history part, it is surprising the number of people who do have it and aren't aware. So many people have said that after really looking into it how uncles, grandparents etc did have a twitch either now or when they were kids. If it isn't too noticable then it isn't picked up. TS is so different with everyone and we sometimes look for the obvious when trying to figure out if there is a family history. There does seem to be alot of support for the theory that the gene makes you more suseptible to TS, along with the influence of environmental factors etc. My older brother has TS and is the only one of the 5 siblings with it. Out of all of our children {nieces and nephews plus my kids}my 8 yr old son is the only one with it. Some research shows that epilepsy is also related and interestingly 2 of my other kids have that. As for the OCD my other 2 kids have that, but not incredibly bad. (I have 5 kids, 2 boys and 3 girls) Strange stuff. I'm still incredibly blessed however considering the things that some poor kids have. I strongly believe that there are outside influences that can have an effect on the ticcing. That's where I'm at now. Still trying to figure it out. A healthy diet can't be a bad thing anyway, can it? ha. Hope everyone is well... this is a good topic!! From Lyn.

Hi Faith, I think even if these books really have worked for their authors, it's still going to be a "this worked for me but won't for everyone" thing. Only thing is we'd have to pay for it to try it. That's why I think these forums thast offer peoples experience are so good... it can be trial and error but all our information we offer is free. I still say that if you really had the cure, you wouldn't expect people to pay for it, especially if they've gone through it themselves. Lyn

Hi. Yes, there are a few out there like that. Gee, if any of us thought we had the "cure" we'd tell the whole world for absolutely nothing, wouldn't we? I doubt it would have anything more in it than what is already written about here, do you? from Lyn.

Welcome VTXRAIDER! Thankyou very much for the info. I hope this medicine continues to be successful. It's great that your son has had such great success on it. Do you know when it will be readilly available ? The good thing is that he also has no side effects, sounds like a dream come true. Sooner or later they have to get somewhere wih research, don't they? Really I am so happy for you. Keep us posted, we'd all be interested in how it progresses. My son only has mild TS now, but I want to be armed with good info if the time ever comes when more intervention is needed. Thankyou, Lyn

Hi there!! Glad things are going well. Just wondering, did you keep him on the same diet when you introduced the pure magnesium? From Lyn.

Hi GFAM and others, I don't have any info on the diet side of things {trying to sort that out now too} however I just want to comment on how you said you feel bad getting angry at your child. I think everyone here would totally understand. A few months ago when my sons tics became more obvious and I realised I couldn't really pretend it was nothing anymore, {he hadn't been officially diagnosed at that stage, but I knew} out of fear I actually did get cranky with him and told him to stop them... I wanted to see if it was something he had control over. But see, it wasn't because I was cranky at HIM, i was just scared of facing the truth, and that is how I coped. I gave myself a huge reality check though when I finally accepted what it was. I suspected TS on and off for a yr or so beforehand due to funny little things he did. {my brother had tourettes, that's how I noticed things in my son} I suspected but didn't want to believe it. Luckilly it was only a few days til I pulled myself together and said to myself "It is Tourettes, get over yourself and do what you can for your boy!!" Well I did accept it, but I still went through alot of ups and downs, like all of you have. It was so hard to try and put on a brave face for my son and it seemed that all I noticed were those tics... nothing else. Even though I know there'll still be hard times ahead I have totally accepted what he has and doing all I can to try and make things easier for him. I understand the other poster here who said they could hardly bare to look at the child... I went through that also. But it hurt me so much to think that here I am, his own mother, and I don't want to look at him. BUT it was only because if I couldn't see them I didn't have to deal with it. I can honestly say that I'm not so obsessed anymore, but I am still determined to try and find relief. My boy only has it mild at this stage, and we don't know what lies ahead, but I'm trying to focus on now, and just love the heck out of him. When this little boy was born, he sort of glued our family together, there was no jealousy and everyone has always enjoyed having him around. He has such a vibrant personality and I know he has a huge purpose here on earth. Who knows, one day it could be us or one of our brilliant kids who come up with the cure. Also, there are alot worse things around than Tourettes and I feel it is such a privelage to be the mother of my little man. Sorry this is so long, but I just want you to know that as mothers we hurt too, and sometimes we may feel angry and at the end of our tether, we are only human... but because we love them so much everything will be ok. Thanks, Lyn.

Hello all. Chemar, I'm sorry I didn't realise they were the opposite. I just took more notice when they said it could stop other tic disorders. Who knows though, maybe they can reverse it and come up with something. I didn't catch the name last night on the news either, walked in on the end of it. My husband was watching it { i hadn't told him at that stage} and got abit excited as he thought the same. As I said, if they can come up with that maybe they can find a way to reverse the med. Sorry for any confusion though.... bye for now, Lyn.

Hi again. No I didn't catch the name. Apparently some people with parkinsons have trialed it and they said it could be on sale before 4 yrs. {which is still good if it works} As I said it was mainly about parkinsons, however when it said about stopping the tics and saying it could help people with other disordersI really took notice. I even tried to google it but didn't get much. I might hear it on the news tonight and I'll post again. I'm in Australia and I'm not sure where this was "discovered" but with something like that it is usually world news. I think we need people like you who are dedicated to finding relief/cure. Who knows what can be uncovered by looking into it? Good luck, and I'll see if it's on the news tonight... bye for now, Lyn

Thankyou Chemar. Very interesting. I'm wondering if it gets the funding it deserves? I know there are alot of things out there that need curing/helping... I just hope TS is up there with the best of them.

Thanks for that. Looks like you've been very busy!! Do you know what the medical researchers are doing? In any country is there funding for this research? I heard today that they've found new hope in a drug to treat Parkinsons... I heard them say "it can stop the tics" so ofcourse my ears pricked up... I missed a lot of it but I did hear them say it could help other disorders, and I thought it may be Tourettes. I just hope that medical researchers are really looking into it and something can be done to help the people who need it. thanks, Lyn

HI everyone. I've been trying to find what research is currently under way to find relief/cure for TS. Everything seems to be outdated. I am hoping that TS is on a high priority list and not just lost somewhere. I'd appreciate any info on this. Thanks, Lyn.

Hi. I'm wondering if having another person with Tourettes in my family {my older brother} makes any difference when trying to do food elimination and supps etc. I ask this because I noticed someone asked if the cause of the tics were known, eg if there is a family history. we only got this diagnosis a couple of months ago, and I'm trying to get allergy tests etc done soon . Also regardless of wether there are allergies is it still accepted that there are certain things these kids should avoid anyway? Like, the yeast, artificial colours and flavours. At this stage I'm still abit overwhelmed by it all. Thank you. Lyn.

CSP... hi... just like to comment on what you wrote about hoping your son will find someone later in life. my brother has had tourettes rather full on... he was never without friends and has been married twice to lovely ladies. neither of the marriages broke up over tourettes, so in this case it hasn't been a hindrance. He also holds down a great job. However, i know how you feel as my 8 yr old has tourettes and i often have those same fears. but overall from everything i have read most seem to marry and have children regardless. just thought i would share this with you, thanks, Lyn.

My 8 yr old was diagnosed a couple of months ago but i was pretty sure of it already. {tourettes} Earlier, when he was 3 or 4 he would constantly sniff... didn't make a connection at the time though, he would also raise his arm as if to smell his arm pits. We just put it down to something he did as he is a very jovial young man. {sometimes too jovial for his own good } Later, about 6 he started doing a twirl like a ballerina. He even did this during his soccer games {which he took very seriously, so I found it odd that he would twirl when the ball was coming} I think this is when I really started to wonder about it all. In March this year he started a head jerk to the right, first time I noticed it was during their first soccer game of the year. He did it constantly the whole way through. He also had facial grimaces... I made an appointment with our Dr later that week where he hardly did a thing and it improved alot. Ofcourse it comes and goes, and some days are worse than others. I found the head twitch devastating at first, but I have accepted it. The thing thast hurts me most is when he does have facial tics, mostly they aren't bad but some days they are so obvious... and i feel totally helpless. As with the earlier poster, I also pull a really weird face if doing something strenuous... but I don't in public... my father did it and so does my eldest daughter, we always have. I had to have a laugh when I read that, because i have often wondered what people would think if they spotted me doing it. ha. From Lyn.

Hi... I have 5 children, and only the youngest has tics. No other sign of anything like that with the other 4. My older brother had tourettes, and none of the other 4 siblings had it. Yet I have heard of families having more than one child with tics, so I guess it all depends. The interesting thing I was told is that OCD and even epilepsy is all closely related... of my other 4 kids, 2 have had epilepsy and 2 with OCD. I found that very interesting, and even myself I believe I have had some kind of OCD. Hope this helps. from Lyn.

Hi. I'm new here and hope I'm doing this right, ha. My 8 yr old son was diagnosed with tourettes recently, though I had suspected it for a while before. He is not on any medication and I am very interested in trying the food elimination thing. I also want to get him tested for allergies and sensitivities. Is it right to do these tests first? It's all abit overwhelming as I'm sure you understand. I just want to do what is best for him. He has a mild case, and some days are worse than others. I would really appreciate any advice... and this site is a godsend for sure! thankyou so much, Lyn.