lynnie1264

Hi. When my son was being diagnosed, and before he knew our family history, he said that OCD, ADHD and EPILEPSY are closely entwined. I'd never heard of the epilepsy theory... but of my 5 kids, 1 has TS, 2 have epilepsy and the other 2 have s form of OCD. I don't know what to make of that. I wonder if this could be a sign of them carrying the gene... Lyn.

Hi... I believe in the whole "carry the gene with no symptoms". My older brother has TS, the only one of 5 kids who got it. Out of my 5 kids, only one has it. My brothers have 4 kids between them and none of them have it. I'd say we could all be carrying the gene without showing it. My brother who has TS chose not to have children, so I can't comment on that part. But it does probably mean that any of my other 4 kids without TS could end up having a child with TS. Is it possible that someone else in the family does have very minor tics that are barely noticeable? This happens so often, and it isn't til you really look for it that you notice things. Before my son started with the neck jerk thing, I would never have guessed he has TS. So id I'd been asked at that stage my answer would've been a huge "no". This is an interesting thread... Lyn.

Hi Caryn... Wondering if you could explain what I would look for to see if my son's TS is auto immune? I would look through past posts but I wouldn't know where to start. Thanks alot. Lyn.

Yes he was diagnosed in May based on his current symptoms , and the little things he'd been doing that we hadn't been worried about. I did have him tested for allergies, which came p neg but that doesn't allow for "sensitivities" , and also the environmental stuff, and how the sugar and artificial stuff affects them. All kids react differently to things so it's worth looking into. But overall, cutting down on the yukky stuff can't hurt. If your child does have particular allergies though, it could be a bit easier for you to work out. My son's tics have never been as bad as they were when he was diagnosed, which I find strange, because I was so worried, then suddenly once we all became aware of it it all eased. Alot of people say that most kids with tics/TS are deficient in magnesium, and my son has these supps. I figure it can't hurt, and I have noticed an improvement to be honest. I've been honest with my son and explained to him what TS is just so he's not scared of the unknown. At first he thought it was something he was going to die of, so I'm glad I explained it. He knows that he is still a normal child and that so many other people have it. At this time he's really good about it. When he doesn't tic much he will say to me "Mum, I haven't been touretting much lately have I?" Ahh, you gotta love 'em, hey? lol Lyn.

Welcome!!! And you're right, you are certainly not alone. 8 seems to be a very common age when these things come to light for some reason. My little boy started with the head twitches a couple of weeks after he turned 8. However, looking back I know there were a few other little things over the past year or so that you tend not to worry about til something more obvious comes along. Others here will have much more valuable info than I can offer, but I think what I'm doing has helped. I've cut down on sugar {not totally got rid of it} and cut down on artificial stuff, he has magnesium supps. My boy only has mild TS and at this point he has tics that aren't all that obvious. From what others have said here Sheila's book is great, I haven't got it yet. But there's a wealth of info even just on this site. All the best, Lyn.

Hi again... Just reading your last post... my son has that same anxiety, and it really annoys some people. You can watch the stress levels rise as he's asking "when" "how" etc. Even as you're trying to explain it to him, he's talking over you asking the very same things. Anxiety is a big thing with him, and I do think this is what sets off his bad behaviour at times. You're right, we ALL live with uncertainty, nobody can guarantee anything. Try explaining that to an anxious kid. But as I mentioned earlier, I have a similar problem, so.... He tries to calm himself down but it's hard. Lyn.

Lynsey... I just read your beautiful post. Thank you for that. That is exactly what we need to hear. And you have been so honest with how you felt. I was the same for a while, I couldn't look at him, it hurt to much. Then, the fact that I couldn't look at him is what hurt me the most, and what made me come to my senses. I remember thinking "I am his mother, if I can't look at him then what do I expect others to do?" I was more upset by my own attitude than anything else. My kids are my world, always have been, and I was so disappointed ion myself for letting myself feel that way. That was my wake up call, and I'm glad it happened. It took a while for me to be able to accept what he had. My brother had TS {probably moderate} and that's all I had to go by. I admit I was devestated. But all in all that feeling only lasted a few weeks. I realised that he was still the same beautiful little man he was before and he needed to be treated the same as before. I have also reduced artificial stuff and he no longer drinks cola {although when he's doing well I do lt him have treats still, he's still a kid afterall}. My son has mild TS, but yes they change. I know that most of my worry comes from "what will the future bring." And what good is that going to do me or my son? Worrying about something that may never happen. {but that's me all over, not just with TS, with anything. I always worry about things that are never going to come about so I guess it's natural I'd worry about this } I, like so many others here, used to watch him all the time, almost as though I HAD to see each tic to keep on top of it. Drove me crazy, but the worst thing was that my son noticed me watching and I'd see his sad little face, I could tell he was thinking "There must be something really wrong with me, she's watching me all the time." So I stopped all that and accepted that whatever happens will happen and we'll deal with it as it happens. He has the right to feel "normal" and loved and accepted... because he is normal, loved and accepted. There are far worse things that children have, and this is not the end of the world at all. Thanks again for your post, and everyone else who has written, it's a lovely thread to read. Thanks so much, Lyn.

Thankyou for that Chemar... The one I have my son on at the moment is a tissue salt... magnesium phosphate is all it says. It's a rapidly absorbed one and it is chewed. It says you only need a smaller dose because it goes directly into the bloodstream {or wherever it's supposed to go. lol} through the mouth. {something like that} My son likes taking them as they're easilly chewed and have no taste. {which is better than the Valerian root I tried the poor kid on a while back} I might look into it to see if I can get something similar to what you're talking about. Thanks again, Lyn.

HI... Just wondering what type of magnesium is in the Natural Calm? There's so many types I'm wondering what it was that worked for you? Thanks, Lyn.

Hi again Evol... I agree with Kim and everyone else, don't feel bad about it. as I've said before, my son's TS could well be passed from my side of the family, but even though I knew my brother had it, I didn't know it was genetic til I was researching about my son. .... so, if I had known would that have put me off having kids??? No way on earth. Actually, my brother chose not to have children {not because of TS} and now regrets that decision. We all pass things on to our children, both good and bad, {my mum and I joke that us kids get all the bad things from my father } . Also as I've said before only one out of my five kids has TS. And I wouldn't trade my little man for the world. Take care, Lyn.

Hi... My son started having his noticable tics just after he turned 8 in April this year. I can honestly say that they have never been that bad since. He had the neck jerk to the side, a twirl, and a facial grimace... all overwheling to me. however, looking back over the past year or so there were little things that were tics too, but we just didn't put it together. Things like, he would smell his fingers after he touched something {not weird really for a kid}, and he did have a bit of an eye blink, again not obvious enough to worry about. It wasn't til he was playing soccer one day and the head jerk started that it all fell into place. So it seemed at first that it was out of the blue but perhaps it wasn't really. I have started him on magnesium and Kalm Kids... but as I said his tics are mild and are usually brought on by excitement. but I have tried to cut out artificial flavourings and colours, choc etc... but I'm still trying to find a way of helping him. It's overwhelming but there is alot of help here. All the best, Lyn.

hello... I'm glad your daughter is doing so well. I would put the stubborness down to the age thing. There is that saying "wait til they start grade 2!" lol I've usually noticed a stubborn streak in all my kids at that stage. Something to do with not being the babies at school anymore etc, "attitude" time kicks in. I had to laugh when you said at times you have to pick her up and move her... I had that same problem with my very stubborn Miss 13 yr old last week. ha. She's NOT the one in the family with tics either. All the best, Lyn.

Hi Evol... I'm glad you weren't teased or anything like that growing up. It's hard to figure out what my brother went through, as I said he was 8 yrs older than me, so I don't know how things were for him. But I do know that he seemed to have a large circle of mates , still does. I know he has TS, and I'm the one who told our mum a few yrs ago.Mum had never known why he did tic. this was after I looked into it after seeing a story on TV. I don't think Mum was embarassed by him, just bewildered. I'm sure she accepted him, she is a lovely mum. Dad on the other hand was very nasty, and treated him like he was an outsider. there was no attempt at understanding. How on earth my brother ever got through that I'll never know. But even now he still has some tics, he has a very good job, keeps getting promotions, has many friends it it doesn't really seem to be much of an issue. He has more of social life then I could even dream of having. : The only reason I think I noticed was because Dad was always carrying on about it. but to me, it was just how he was. No big deal. But then my dad was the type of person who had to have only "perfect" children... that's because he thought he was so perfect, lol. Dream on.... {mind you none of his kids measured up to the "perfect" rule... so...} I am so glad things have changed now, but still not enough.

Hi everyone... Wondering what your experiences are with wax and wane time frames? From what I've read it's usually an even time, like 3 mths wax-3mths wane or 5 week wax-5 week wane etc. I haven't found anything like this. My sons tics might be more obvious for a day or 2, 3 at the most, then we don't see very much {still minimal tics though} for varying times, could be a month, 4 weeks, 7 weeks. There's no typical to it. Does anyone else find this? When they do become more obvious again it's only for a couple of days, usually if highly excited. Thanks, Lyn.

Evol... Just want to add something ... I reread your post and I'm concerned that you feel your son will be a "victim" of TS. I know they are only words, but I feel because you were raised needing to keep it all hushed up that it's given you the thought that it is a really bad thing. That was the way many people handled it back then unfortuneatley. .. but now it is more out in the open {but not as much as it should be}... The thing we need to change is how when people hear Tourettes they automatically think of severe tics and swearing because that is all that gets portrayed on TV. Evol, you have no reason to feel ashamed... I just wanted to make that clear. I will admit that I totally lost it in a way when I realised my boy had it, but I soon calmed down when I found out they didn't need to be victims. There are so many ways we can help. The only reason I don't feel right telling some people about my son is because I'm sure they'll assume the worst, which isn't the case... and in most cases it isn't. Please keep us posted, Lyn.

Hi Evol... From what I know, just because there are tic genes on both sides of the family, it does NOT mean your kids will have more severe symptoms. Just like when it is inherited, the second one that gets it doesn't necessarilly have the same as the 1st... and so on. I know what you mean about the "secret". My son is 8 and has mild Tourettes. My brother has Tourettes. But nobody ever spoke about it, he is 8 yrs older than me, and I always remembering him having some type of tics. He is much older now and they did seem to ease alot as he became an adult, he only tics mildly now. However, I can't even bring myself to talk to him about my son because my brothers TS was always a taboo. Mum did take him to the DR when he was 10 but nothing was known about it then. I assume my brother ended up getting his own diagnosis as he got older. The only reason I know he has TS is as I got older I wanted to know why he did it, and did my own research. Little did I know that a future child of mine would have it one day. So I do understand where you're coming from. Don't feel bad, you were raised with it as a secret, so obviously you wouldn't have felt open to telling your husband. Things will be OK. As Carolyn N. said, keeping it inside is not going to help you. I really feel for you. Your husband will understand once you tell him how you were made to feel like it was a secret. Trust me, you wouldn't be the only one. Take care, Lyn.

That is such a beautiful story!!!! It'd make me emotional too. Lyn.

Hi So what symptoms are similar with TS and pyroluria? I assume there are tics of some sort? I had never heard of this. I find this interesting as there is alcoholism in my family, {not me, one drink and I'd fall asleep. lol} Lyn.

Hi Michele... sorry to hear what you are going through with your MIL. My father was very much like that. He was spiteful and was never happy if my brothers and myself were getting along, he'd always talk behind eachothers backs... once we got old enough to have our own opinion he wiped us for a year or so... he enjoyed the misery. Mum and I have talked about it and both agree that there wwas something "not right" with him. He died 18 yrs ago, but has left a path of destruction behind. I only speak to one brother {he has TS} and the other 2 brothers only talk to eachother because they wollow in misery together, and nastiness. Those 2 are just like my dad though that was once what they feared the most. Is there a link? Mum and Dad had 5 kids... {one boy died as a baby} so... two of those 5 kids are "challenged" like my dad...my good brother has Tourettes, and I think I'm normal ... but I think I'm a bit OCD but I control it. THEN... out of my 5 children ,2 have epilepsy, 2 have OCD {probably only to the extent I do}, one of those girls has depression also, then my little boy has Tourettes. A fine mixture there... so is there some kind of link between it all? ... forgot to mention my dad also had epilepsy but denied it... he took medication in secret. Typical!! lol Michele, don't let these people bring you down, just think how miserable their lives must be just from being the way they are. lol. You know you're a good person and that's all that matters. Take care, Lyn.

Hi. I'm so glad that it's all working out well. Isn't it funny how we can scoff at some things only to find we rely on it later? I was just saying the same thing to a freind of mine the other day... about how I was never one for the "natural way" and now I'm pinning all hopes on it. lol. Good luck, and hope all stays well. Lyn.

Hi Guy ...as for him calling your 12 pages of research OCD, well what does that make all of us ? Anyone who tics or is a parent of a child with tics will do alot of research... how else would we find anything out? You hear so many parents say how many hours they spend on the internet trying to figure things out. I think it's a normal response, to lable that as proof of OCD is silly. Ofcourse you will do as much as you can to fix the problem. Plus, you are entitled to do as much research as you can when it comes to medication!! I hope this works for you, take care, Lyn.

Hi, I've heard a bit about the possible "sub sets" of TS. I've googled it etc but can't find anything that really explains what this means. I'm hoping someone here can help me understand it. Does anyone know what these sub sets are? Thank you, Lyn.

Welcome anjelictwins!!!! I know it can be so confusing trying to figure stuff out from scratch. Grrrr!!!! All I could do immediately was to cut out his coke, avoid artificial colours and flavours, chocolates because of the cocoa {i found one white choc that doesn't have cocoa in it so he can still have a treat.} He watches his sugar intake, he still has it in his cup of tea of morning but has very few lollies. He doesn't have any obvious food allergies but haven't had him tested for environmental stuff yet. Peglem... you mentioned the valerian root... I tried that for my son but it smelt and tasted disgusting {smelled out the whole cupboard even with the lid on}... is there a secret to making it more palatable? I have him on "Kalm kids" {I'm in Australia} and unlike your kids calm there, this is made up of HOPS... as in beer hops. It's supposed to be an age old calming remedy. My boy has mild tics but his anger outbursts can be a problem at times, and he finds these tabs work, and I agree. Hope things work out .... Lyn.

Hello.... Just as a matter of interest I thought I'd let you know that here in Australia L-trytophan can no longer be bought over the counter. It was available that way but because of it's strength you now have to get a script from the DR... even though it is a natural product. Just wondering what it is like over there? Do you need a DRs approval for it? Lyn.

Thank you everyone for your help!!! Kim, I know that he has been sick, he's missed a fair bit of school. My friend did mention how he's had strep {i found that interesting} and I mentioned to her what I knew from this site... she had no idea of any connection there. Because I'm not around them all the time it's hard for me to know, she has just said he has had a few bouts of sickness lately. He's been on antibiotics quite a bit too. Not sure about the immunisation, I'll ask her. Another thing worth looking into is the celiac disease. {not sure I spelt that correctly} This is a side I don't know much about as my son has straight out TS it seems. Thank you everyone for your comments, it's a great help and I'll certainly pass all the info on to her. I also know he has been very stressed as his mum is having big problems with her current partner, I guess this could contribute too, hey? Thanks again, Lyn.