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jdmom

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  1. I too think it's a tic. My son tics the most when watching TV. I don't know what happens with the brain chemistry during TV time but that is when it's the worst.
  2. Hi there, My son is 10 and his tics started at age 6. I completely fell apart when this started. I went on anti-anxiety/depression meds for about a year. Basically, I just couldn't accept that this was happening to my sweet boy and couldn't get past the fear of what it might all lead to. I was freaking out constantly the first 2 years (but I was very good at hiding it at work and in general). I have to say, 4 years later, I am doing much much much better. My son's tics are fairly mild (neck/shoulder twitches, eye rolling, that sort of thing. and vocal are typically a grunting/throat clearing thing.) The thing I've noticed is just that they come and they go, but they never go away completely. They come in spurts at times but we just went for about a 5 month stretch on the down-low. Now he's doing an eyeball roll which started a couple weeks ago. Since he started school this week, we spoke to his teacher about it to make sure she wouldn't think he was doing this out of a bad attitude. We have told all his teachers about it right away. They are always like, oh okay, thanks and it's no big deal. I can tell you, my son started this stuff in kindergarten and he's in 5th grade now. He has NEVER been teased about it or even asked about it. He is not bothered by the tics. My son is a very bright and creative child. He is doing very well in school academically and socially. He plays soccer and the tics have not impacted his childhood in any way. The most important thing, and this is the hardest thing for me....try not to make a big deal about it or show it's bothering you. Ignore them as best you can. Our neurologist said, try to leave the room if it's bothering you. Sometimes I have to do that when things flair up and then there are those good stretches and you start to relax a bit. Over time, you will see that they come and go and it's not necessarily getting worse. My son's are not getting worse and for that I am thankful. Another thing, we do not allow him to have MSG or red dye and we give him magnesium every day. We feel it's important to stay vigilant with these things, even when he's doing well. Personally, I think kids with tics must have very sensitive brain chemistry and it's important to keep things balanced. I would like to do allergy testing but we haven't tried it. It's hard to get medical doctors or even the neurologist to do anything they consider alternative. When this all started, I was soooo scared to tell anyone about it. I think because telling about it would make it more "real". I opened up to a friend and almost fell off my chair because she told me her son has the same thing. I felt God's presence right then and I'm not even a religious person. What are the odds the one person I tell has the same thing with her son??? Her son is 18 years old and still has tics. But you know what, he is a GREAT kid. Tons of friends, star baseball player, has had the same amazing girlfriend since the 8th grade and he is a very HAPPY person. So while none of us would ever ask for this challenge, just know you and your son will be okay. It will take time to accept it. Don't rush to put him on meds. My son nor my friend's son has ever been on meds and they are doing just fine. This forum is great for talking to other parents. Some are at the point you're at, others have moved on, we all know how emotially challenging it is. Hang in there!
  3. I am so curious about this observation with your daughter. We took my 8 year old son to his grandparents' house last winter and I was amazed about how his tics completely stopped and he was so much calmer and less emotionally volatile. I kept thinking that something must be different and it could be that they live in the forest and maybe there was less exposure to powerlines, cell towers and such. Plus we have a cell tower close to our home so I wonder if that's a trigger. It was a dramatic difference and I kept thinking, okay, these tics can go away and someday they will go away and stay away. Can't wait to see what happens when we go back this summer.
  4. Now I'm curious if there could be a link between IBD's and TS. My husband had a terrible case of Ulcerative Colitis and now our son has TS. Don't know of a genetic link to either.
  5. Thanks for the inside scoop on MSG and its other names. I ordered the book last week and can't wait for its arrival. I keep wondering...are there really triggers? or is it the brains way of processing it's own chemicals or whatever it does perhaps on a cyclical basis??? When my son starts a new tic, it last 2-3 weeks. Valentine's party in the classroom next week, oh yeah, load him up with sugard, chemicals and food dye. I wish they would just do crafts instead of feeding them junk at these classroom parties. Man, I feel so grinchy here! sorry! lol!
  6. I have always been a worrier and now that I've been given something "real" to worry about I'm fighting depression. Although my husband says, don't worry, he's going to be fine, I know he is concerned but just doesn't like to talk about it. So I'm glad I found this forum to relate to others willing to share their experiences and share some moral support. So thanks everyone!
  7. Hi Anne, Thank you for your post, it was inspiring. If I could fast forward to the future and see my son as a young man with a happy normal life and not socially ostracized, I would wish for that and breath a deep sigh of relief. My son will be 9 next month and I worry myself to pieces about him every single day. In April it will be 3 years since this started and I know the anxiety is taking years off my life. I think his tics are mild/moderate, I'm really not sure exactly. Some days below the radar, other days obvious. Fortunately so far nothing that is disruptive in the classroom, etc. I understand we are going into the worst years and I wish I could just hold my breath until he's 20 and see him coming out just fine. Fortunately, my husband has a much more positive outlook and just keeps saying he is going to be fine. Thanks for listening... Sandy
  8. Our pediatric neurologist who specializes in "tics, tourettes and movement disorders" drew a bell curve showing tics typically starting around 5 years old, becoming more frequent up until before puberty then gradually declining back to where they started by the early 20's. So it's a bell curve that starts out steep then drops down over the years after puberty. I try to keep this in mind as much as possible. However, she also said that "there is no way to predict" how severe they may get or how long they will last or whether this curve will apply to my child. She did say that children who are doing well academically and have good social connections do better overall and these factors are actually more important than the the tics themselves. One last thing, when I asked her what the chances of my son having a normal life when he grows up, she said "Great!" absolutely wholeheartedly. She also says that she does not prescribe medication for the parents, she only prescribes if the child is needing it. In other words, she doesn't give medication to a child just so the parents can feel better. There is no magic bullet but I do hope if my childs tics worsen or he starts feeling badly about them, the medicine will offer some relief. I really haven't read into all the details on the meds yet. Hope this helps a bit.
  9. I've also just recently been sensing MSG could be a trigger. When I make top ramen, I toss the flavor packet and use bouillon base that is MSG free. It tastes so much better anyway. We are having our son drink one of the Emergen-C drinks everyday now to boost up his Vit B and Magnesium levels. We try to limit the cookies/candies/sugar which is so hard, it feels punitive because his little dessert after dinner seems to be the highlight of his day. Honestly, I haven't figured out if there is a dietary trigger, or if the ticcing just goes through it's own cycle. Does anyone know if the brain chemicals have cycles of their own, as hormones do? Everytime a new tic starts, it seems to last a week or 2 then fades out and after a little reprieve where things are really below the radar, the next thing you know a new one (or I should say a returning one) emerges. Right now my son is doing a jaw stretch. It's a tough one, especially at mealtime. Sometimes it interrupts his talking, he has to pause between words. Thanks for listening everyone. I'm a newbie on ths board even though we've been dealing with this for almost 3 years.
  10. Bonnie, have you tried any of the natural remedies with your son or since his tics are mild haven't felt the need to do anything? It's so bizarre how they come and go (well not really, you know what I mean). There just has to be something causing this pattern, triggers as they say. We have been really keeping an eye on my son's sugar intake and his ticcing has decreased recently. I don't know if there is a correlation or simply coincidence but we are going to keep trying to eliminate sugar, chemicals, etc. from his diet as much as possible. BTW, I am sorry for my delayed reply. My father was diagnosed with a brain tumor on Monday and had it removed on Wednesday. The surgery went really well thankfully. He also had a brain aneurism in 1982. We seem to have a lot of brain things going on in the family! Fortunately, things somehow seem to keep working out so I have to believe the tics will too!
  11. Lyn, Thank you so much for your reply. It is comforting to hear from other moms going through similar feelings. So we're 2 1/2 years into this thing and I am having some relief in that things have not gotten severe. Is it possible this can stay fairly mild/moderate and it will just be a quirky thing of his? It sounds like if your brother has it and never knew the name he must have a mild case. So I go around in circles with these thoughts and know it is really out of my control which is very difficult for me to accept. We were camping last weekend with friends and my son was having such a wonderful time playing 4 square with the other kids. He was doing a lot of neck movements and it was hard to watch and I felt like the parents of the friends we were with were noticing and watching him and that made me so nervous. I just don't know how to handle it. Do I say something or just ignore the elephant in the room? I feel that there is such a stigma associated with tics/tourettes that makes it difficult to speak openly about. Their son stutters and I don't say anything about that so it's sort of the same thing really. Anyway, thanks for listening here. It's so nice to know someone out there can relate. If only I had a crystal ball and could see him happy and thriving as an adult and then I could relax through this whole thing. Sandy
  12. Thank you, I don't recall if he was tested for strep. I do remember there was a test having something to do with lime disease? Our neuro is a pediatric neurologist specializing in tics, tourettes and movement disorders. Maybe I've had too much confidence in her diagnosis based on your feedback. I am really curious about the environmental allergy thing since everything calmed down completely when we were away from home last winter. Is there testing for that?
  13. Hello, I want to thank you all for taking the time to hear my story and share your experiences and support. It does feel so much better to be connected to others who are going through or have gone through this. Laurena, you mentioned your son was off catapres by freshman year. When did he start taking it and what were the side effects? Our neurologist says she treats the child, not the parents and if he's doing fine, there is nothing to treat. Now I respect this and agree completely, but I also don't want my son to start getting teased and have this become a real issue for him before we would turn to medication. I also wouldn't want him to be so mellowed out that he isn't able to stay engaged in his studies. I would love to hear your opinion on this. Mar, what do "ds" and "dh" stand for? I must be missing something! CP, to answer your question, we do not have any family history of TS. This just came out of the blue and hit us like a ton of bricks. My daughter is 5 1/2 and she doesn't have any signs of this. I can tell you my son has always been a more anxious child than her and is intense/high strung. My son's best friend who lives nearby has a stutter. I've read that stutters are also a neurological condition. It makes me wonder if there could be an environmental factor. Another thing, when we went on a vacation last winter to my mother-in-law, she lives in a forest basically, far from the city and his tics stopped pretty much completely while we were there. I was so baffled by that. It made me feel hopeful that perhaps this could all go away some day. I can't believe this waxing/waning business. There has to be something causing it. I don't understand why the doctors don't tell you do anything about the diet/supplements, etc. Do they really work and why does everyone think they don't say anything about these? We will try the dietary changes & supplements although I know it's going to be hard. He has such a sweet tooth! Has anyone tried acupuncture? I've heard it is helpful for anxiety which is sort of related. Here is an interesting story. When I first learned that my son had this, I was not comfortable telling anyone (because that makes it more real!). I decided to tell a friend and amazingly, she told me her son has the same thing! I almost fell out of my chair it was so crazy to hear that. Her son is 16 and his tics started when he was 7 or 8 and have remained relatively mild and in fact she's never even taken him to a neurologist. They have family history so I think it's not as scary for them in that they've seen it and know it's not the end of the world. Thank you all again so much!!!!!! jdmom
  14. Hello, My son is 8 1/2 and was diagnosed with TS a year ago. The tics came out of the blue as soon as he turned 6. It was easter morning and his shoulder/neck kept moving. Remembering learning about TS in college, my heart fell and crashed into a million pieces that morning. So far the tics have been relatively mild. Head and shoulder jerking mostly. Sometimes a mouth stretch or blinking. I've noticed a finger stretch thing occasionally too. He has had vocal ones too, although he hasn't for a while. Those are typically throat clearing or a low humming sound. Okay, so after 2 1/2 years into this thing, I still haven't accepted it. I don't know what to do to deal with it more...maturely? I don't know but I do know I have a lot of fear. I'm sure you all know where I'm coming from. It has actually taken me this whole time to even read the posts on this site, at least I'm coming out of denial. 1. Our neurologist said that the tics typically peak around 10-12 years old and then by about 18-20 calm down to where they were at about 5 years old. She also said "there is no way to predict". Okay, so does anyone have any experience with a child "growing out of" tics after childhood? 2. If his tics were going to get severe and complex, would they by now? Or is it still a total wait and see with this? I want my son to feel unconditionally accepted and loved. I think this is more my problem than his at this point and I need to be strong for him. Fortunately, he has a great dad who stays positive, strong and calm about it. One last thing, my son is a very excitable child. When he gets excited he tics even more which makes me want to tell him to calm down. Of course I don't want to spoil his good mood. Will this calm down as he gets older? Seriously, if he's just telling me about something he's excited about, it just revs everything up. I appreciate your comments and insight.
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