lynnie1264

Welcome jdmom, I could totally identify with you when you said your heart broke in to a million pieces that morning. that's just how I felt, I don't think I've ever felt so devastated in my life. My son is 9.5 now and was diagnosed with TS in May last year. Like you, I also knew about TS, my brother has it {though it was never mentioned} and I had done my own research on it 15 yrs earlier. Little did I know my own son would have it. I did not know it was heriditary til I researched it when my son had it. However, my son Brendan is doing fine, really he is. It is more of a problem for me than it is for him. Mostly I'd sau his tics are mild, but there are times when they escalate, I'd say moderate. Like your boy, my son tics more when excited or stressed. You're right, we can't stop them from having fun just so we can ease the tics. I can also pinpoint the exact day it dawned on me... April 19th, 2008... during his soccer game. There had been tiny, insignificant things in the past, but that head to the side tic did it for me. I had to stop myself from crying just watching him. I really do relate to you, and i want you to know that he will be fine in the end. Honestly, I never thought I'd get over it, but it's nowhere near like I thought it would be. I go between accepting it and then falling back to not accepting it. Sometimes I prefer not to look at him, so I don't see them. That stinks, but I think most of us have gone through that. I am nowhere near as knowledgable as some of the other ladies on here, but I can relate to how you are feeling. all the best, and keep us posted please. Moral support helps so much. Lyn.

Hi Best thing is to get your doctor to write a referral for an EEG. My daughter has absence seizures, and they can easilly be controlled by medication. It's important to get these seen to straight away, as, yes, it can be dangerous... eg, walking into a car or something similar. There are 2 types, the ones where they have no idea what is going on in those few seconds, and the other where they are aware but can't do anything about it. Either way, your boy should be fine with meds. Try not to worry as this is very common. Best to get the EEG done asap. all best, Lyn.

Wow, this seems to be much more common than I thought. Anyone else I've ever asked has just looked at me blankly. I thought I was being smart the other day, my daughter didn't want her extra toast so I scraped the TINY bit of egg off it and ate the toast. Barely any sign of egg left. but still, the tummy ache came full force. I certainly had never heard of anyone who could still eat the egg in cakes etc. Everyone said if egg is a problem than it's a problem in all forms. Obviously not right. Surely there must be some connection with the avacado. I bet there's alot more with this problem than us!!! Thanks for your input. Lyn.

Bonnie, Hi. Yep, I agree, all you need is the EEG . Even if it is epilepsy, you don't usually have to go through all that other stuff too. EEG should tell you what you need to know. When it comes to epilepsy though most of the time it does require meds, where as with TS we have a choice. Left untreated it can become worse, and even simple absence seizures can cause a child to walk in front of a car, or into something dangerous, as they blank out for a few seconds. Some will just stop and stare, but others will continue walking if that was what they were doing when it happened. Hopefully this may have been a one off. But it'll still be ok if it wasn't. Big hugs to you!!!!!! Good luck, Lyn.

Hi. My 9 yr old boy has been taking Nature's Own B Complex Forte since January. He's never had any tummy problems from it though. Lyn

Hi Bonnie, Sorry to hear about this. 2 of my kids have had epilepsy {one still does, my 14 yr old daughter}. The doctors will most likely send him for an EEG to check how the brain is firing, and even if he has had one done previously that seemed ok... these things can change anytime. My older son {not TS} had mainly absence seizures and outgrew them around 15. My daughter has generalized epilepsy but has luckilly never had a grand mal. she mainly has the absence and similar ones. They say if it's a one off seizure they don't call it epilepsy. Criteria for this may have changed but you needed to have at least 2. Sometimes seizures can happen for no reason, and hopefully that may be the case with your boy. Is there epilepsy in your family at all? In my experience with my father his "falling down" seizures lasted longer than the 2 seconds you mentioned. If it is epilepsy, please don't be scared by it. But, yes it can be terrifying to witness it especially if you don't expect it. Could it have been a reaction to something? As for a connection to tics etc, if you read up on it you will see varying opinions... some say yes and some say no way. When my younger boy was diagnosed with TS {Dr didn't know the history of my other kids} he said that there was a connection between epilepsy, OCD, depression and Tourettes. I told him my father and 2 kids had epilepsy and he found that very interesting. They also say that diagnosing epilepsy is very much an observational thing... what parents, friends and teachers see. You can have an abnormal EEG yet never show signs of it. They take the observations and EEG results and work it out from there. Luckilly both my kids EEG's were obvious for it so it made it so much easier to start treatment. Hope this helps a little. Good luck!!!! Lyn.

I'd like to think they'll come up with some kind of answer. With all the research, there's obviously something they're missing. It must be a really tricky thing to sort out. Even though TS has been around for such a long time, it is only recently that it's been taken seriously. I'm hoping they do find something. Even if it's not a total cure, I think most would be happy with very mild tics. Lyn.

Hi Kim, You mentioned "subsets" of TS. Can you explain what you mean? I've heard of this too, but I brought it up on here a while ago and a couple said they'd never heard of subsets. I can't even remember where I first read about them but it made sense. Thanks, Lyn.

Hi. I'm also not sure that diet has a big influence over my son's tics. Same as you, eating junk doesn't necessarilly bring them on or increase them, and taking it away doesn't bring about a change. My son is 9 and since January this year he has been on: 1 Vitamin B complex {morning} 4 times a day he has half a magnesium {Schuessler Tissue Salts}... breakfast, morning tea, after school and before bed. The half tablet can be increased to 1 whole tablet for up to 6 doses in a row if ticcing is increased. 4 times a day 1 whole tablet {times same as above} he has {Schuessler Tissue salts} Kidz Be Calm... used just as a calming thing. This dose can be increased to a whole tablet every half hour for up to 2 days or until symptoms eased. Though I've never increased it yet. My son is normally only mild, but in January he had a big increase and I was considering meds for him. Dr said for me to try the Vit B combo and keep up with the mag I was using, and to find some calming tablet. Within 2 days of starting this combination his tics were back to normal {hardly anything} and they have stayed that way for 4 months now. I'm not sure if it is the combination of supps he's on, and I may never know. I just know things went so well after I started them that I'm not going to change. Even times when I think they will increase {stress, excitement} it's nothing like it used to be. To be honest you'd never pick he has TS now. Although when he's playing soccer he still has a few, but they stop as soon as the game ends. All I can say is I'm happy with the way things are now. He was diagnosed in April last year and this has been the best he's been. Most days I don't see anything much at all. Hope this helps. Lyn.

Chemar, You said you think there's more than just the B6 needed... see, my son is on a B complex and I had been wondering if I should change him to a B6, but I don't think I will now. So far this is working fine for him. I don't like to mess around when something seems to be working. I agree also that the magnesium is a big one. After we missed that week at Xmas we had never seen tics so high in him. I will NEVER miss the magnesium again. Lyn

Hi Dee45, Welcome!! Did you see Kim's post titled "mag & B6". It isn't far below this. Apparently it's a good combo for kids with TS. My son's Dr even suggested the very same thing. So it seems like you could be on the right track. As Chemar said, the increase in tics could be to do with going off the meds. Also, a sign of magnesium dose being too high is loose stools. Then you know to cut back a little. My son turns 9 next month and was diagnosed last April, just after his b'day. But certainly have a read of Kim's post and go to the link. Seems like the mag & b6 could be a good start for these kids. Lyn.

I don't know a real lot about this stuff, but hey, it certainly seems like she was trying to sell her stuff. Why would someone advise you to go off what is working? It annoys me because we all try sooo hard to get something that works, then along comes someone willing to risk that merely to sell their own stuff. If it were me I would be going back to what you know. Even sounds like she was abit harsh in her criticism of the diet. I think I would've come away feeling the same as you did. I thought they were supposed to work "with" you. Just remember you've done everything right, and from the sound of it you also did a good job of it. Lyn.

Thank you Kim, This goes along with what my son's Dr said to me in January. He said the best thing for TS is the mag together with vitamin b. I know this study says B6, but it's close enough for me. My son has not had any major tic increases since being on both. I'm so glad studies are being done into this sort of treatment. Lyn.

Hi, Just thought I'd add my experience. I worried when I thought I saw a few tics when my boy was sleeping. However, I realised it was only happening when he was actually stirring. Like, I'd go to check on him, move his blanket a little and I'd see a tic, but then a few seconds later he'd say "what are you doing?". If he hadn't spoken I would've assumed he was asleep. It's only happened a few times and each time I can put it down to him stirring from his sleep. ... or not quite asleep as Guy said. If it's not all the time, it could be just the different stages of sleep. Maybe even dreaming? We all move around when we're asleep, facial expressions that coincide with the dream. All the best, Lyn.

Shydee 75, I'm so sorry you're feeling the way you are, but it's a normal reaction. You will get there. You mentioned that you haven't spoken about the tics to your daughter. In my case, talking about it with my son helped I think. At first he didn't know what was going on either and I really believe it added to the tics. The stress of not knowing increased them. Once I spoke to him about them they seemed to decrease. Ofcourse I let him know that he was normal... I didn't realise at the time but he had actually thought he was going to die until I talked with him. Some choose to discuss it and others don't, and I'm sure you'll do what you think is best. In my opinion, if it's something they're unsure of or scared of it helps if we can talk about it with them. The best thing is that our kids know how much their parents still love them and accept them, no matter what. You just never know what is going through a child's mind. We all know what it's like to feel helpless, but you will find some way to help your beautiful daughter. I wish you all the best. Lyn.

Hi, Just thought I'd add my findings regarding the Vitamin B David mentions. My son has mild TS and his flare ups were only ever for a few days. However, back in January this year they started up again and I started to give him Efalex {fish oil}. well the tics didn't calm down as they normally would . He was also on magnesium {which I will never remove}. He had a DR appt after he'd been ticcing high for 12 days. I'd already ceased the fish oil thinking that could be responsible. Dr agreed that fish oil isn't real good to TS and he never recommends it for his patients. In particular the brand I was using was once seen as the answer for everything, but has apparently come under some clouds the last couple of years. {wish I'd known that earlier. ha} He said to start him on a good Vit B complex and something to help calm him. I did, and the very next day i could see improvement, and 2 days later he was pretty much back to his mild self. Infact I hardly saw any ticcing at all. Ofcourse, yes, the tics are still there, but nothing much. Some days are more than others, but still mild. I'm not saying the fish oil was responsible, or that the Vit B is the only reason the tics calmed down. However, it all worked out well so I'm impressed. We try to avoid art colourings etc, but defineatly avoid any art sweetener. I was at the point during those 2 weeks of putting him on meds as school was starting again, and it seemed like there was no end in sight. {we all know how that feels, don't we?} So, David, you feel that the Vit B has really helped? My son was diagnosed almost one year ago and I'd only ever had him on magnesium til the Vit B. Like David's son, my son also has genetic TS {my brother has it} so I find it interesting that the VitB is working well for them. Maybe it's something that's lacking in genetic TS? Our Dr said there is evidence that all TS patients would benefit from a Vit B complex. He said it just helps what could be lacking. Thanks, Lyn.

Hi. I agree that the fish oil could be a problem. As you'll see on here it has really helped some and been bad for others. I started my son on it during a bad time hoping that he'd be one of the lucky ones. Still can't be sure, but it didn't seem to help him. The tics kept going when they would normally have stopped. Lyn.

Hi 2girlsmom, That is great that you've found an answer. It truly is inspiring that it can be done. With my son I've never totally cut out everything, but severely cut down on the artificial stuff and try to avoid processed meats etc. It's so hard though as even the things stated as being good for you have all this other stuff in. One thing I do totally avoid is the artificial sweetener. May I ask if there's any history of TS in your family? Thank you so much for a lovely post. Lyn.

Hi, I see that extreme frustration in my 8 yr old too. He gets very angry, or very upset if something isn't working out, or it's aimed at his sisters. I also wonder how much of it is just his personality. It's a case of not wanting to blame every bad thing on TS ar /adhd. He sets himself high standards and gets upset with himself if he can't achieve them. There are some days where he's in those moods all day, and I'm glad when it's his bedtime. Through it all though, come bed time he usually goes straight to sleep. I'm glad of that!! Other times he's not too bad at all, but an outburst can come for no reason, out of the blue. Also, it seems sometimes he might feel like being in that mood so he sets about creating the right atmosphere, if you know what I mean. Sometimes I'm at my wits end over the whole thing. It causes a flow on effect because then his 2 older sisters start getting angry with him and it can turn into a war zone. GRRR!!!! Just saying I understand. Can't offer much in the way of help, as I'm still trying to figure it out too. Lyn

Hi Guy, My 8 yr old takes a B Complex forte. His DR has a few TS patients, of all ages, and he said as far as he is concerned that is one of the most important things to take, with the magnesium ofcourse. Ofcourse, as with everything, there will always be some that find it isn't best for them, but my son seems to be doing well on it. I followed it up with a naturopath and he also said it was a good combination I'm using. Brendan had increased tics for about 2 weeks before I started him on the B's, and within a day I noticed the tics decreasing, and within 3 days they were back to his usual mild. I'm not saying it was because of the B's, but it obviously did him no harm. So I guess as long as they don't upset you in any way it'd be worth a try. Lyn

Faith Yes, well I guess I can still get my egg & avacado fix by having a facial. ha ha I know by researching both egg & avocado that they are thought to be wonderful because of their high protein, and when I found a certain site I found there's HEAPS of stuff in both. I never eat egg alone, it's always on toast or with other stuff. I asked my son before if he ever gets a tummy ache after eating eggs and he said yes. I asked because he complained of one last night. He doesn't get one though if it's in cakes though, like me. The other thing is, it's said that if you're sensitive to eggs that you are usually sensitive to other stuff too. Lyn

Rysmom58 Hi. I'm so happy that it's working for your son. It's good for us all to know these things incase our kids ever have to go down the med route. My son isn't on meds, but I have 2 other children who are {for different reasons} and luckilly they have never had any side effects using meds that quite commonly do. All the best, Lyn.

Hi Char, No we haven't. I asked my DR to do allergy tests on Brendan but all he's had done is the RAST, and apparently I've found out you can't even be sure what they tested for as it's up to the individual DR. All the DR told me was he's not allergic to grass. So I have no idea. I don't think he was tested for any food at all. As for me, I have never had any tests like that. It's only been the last few yrs I figured out it was the egg causing the problems, and my mother told me that when my Dad use to force feed me egg as a child I would promptly throw it all up. However I've never had any huge reactions like some do. Thanks for telling me about your husband and mother in law... as I have never come across anyone else like that. might be an idea to test for it. Thank you, Lyn.

I'm in Australia. Here they've been doing the rounds of schools and all girls have been getting it. My 14 yr old got it mid last year, she was fine, but felt a bit ill afterwards. Some of her friends passed out though. {could be they don't like needles} She has had all 3 of the needles. My 15 yr old wasn't at the school at the time, but she's supposed to get hers soon through our normal DR as it's only free here for a few more months. To be honest, I don't know what to do. The 14 yr old has epilepsy and if I'd known they could have seizures as a resulty I may have decided against it, but she was fine. Not sure if I'll do it with the other girl though. Tricky. {neither of them have TS, just my younger son.} Lyn

Thank you Char... Regarding your husband and his mother, are they able to tolerate eggs when they're in cakes etc? I've been told the thing I have is a bit weird because if you're sensitive to eggs then you'd have that reaction no matter how they're prepared. I have the same reaction to Avocado too {i think it's called something else over there} and I've noticed they're both very high in protien. sad because I love both... well I use to. Thanks again, Lyn.