The7roses

Hi all, It's been quite some time since I posted here as all has been going well with my son, Devyn. I do have a question that I need some type of answer to, though. I have read that it is possible for tourettes to go from simple to severe due to an emotional upset. I read a post a while back that said the the child's grandmother died and the tics went from simple facial tics to the arms and legs and this little girl had no control over her extremities after that as she was so close to her grandmother and was traumatized by her death. I also read that the emotional upset from a divorce or even going from elementary to junior high can cause this to happen. I would like your feedback on this as it is a question I need an answer to. Thanks to you all!

Oh Chemar....BLESSINGS to YOU!! There is no known TS on either side of the family. The Neurologist said it was most likely a GENE MUTATION and said there IS cases of TS without a family history. Of course, that is not what I wanted to hear. I am determined to prove her wrong! As mentioned before, Devyn also has Selective Mutism and does not speak in school. Towards the end of the year, after he has reached his comfort level, he usually will say a couple of words to his teacher. So, for him to be in school ticcing, he is verbally not able to defend himself as to why his face is doing what it is doing. This is the double whammy for him, which is why I have thought about homeschooling him when he starts middle school. If there was teasing, he would regress in school, which we don't want because he is a WIZ in school right now. He has no learning problems, has beautiful penmenship, draws very beautiful and detailed art and is extremely smart, which seems to SOMETIMES be what TS isn't. From alot of what I have read, TS brings on learning problems, sloppy writing, etc. I just have the gut instinct that this is not true TS, although he fits so much of the criteria for having it. I feel I have taken on a true challenge as he is dealing with anxiety, dairy allergy, high cholesteral and now tics. He has so much to deal with.... So, the Mag/Taurate from The Vitamin Shoppe is 125 mg. How many would he take a day and at what times? Do I also need Zinc, Calcium and B-Complex? If so, how much do you think and at what dosage. You don't think this is too much to throw in a body all at once, do you? Also, is it possible that the Prozac he was on (for about a month) brought on the eye rolling and the pidgeon=toed walking? As soon as she bumped him up to 20mg., both of these started. He has been off of the Prozac for about 3 weeks and he is still dealing with the eye rolling and the pidgeon toes. I hate to keep asking the same questions over and over, but it seems we all get on the subject of some of them and get caught up in those answers and forget about the rest of them. I am trying to get all my questions answered so I can better deal with this. Forgive my repetitive asking! Also, I had him spit in a glass the other morning and nothing happened. It just sat there. So, I guess he does not have a yeast problem? Also, what is the Treelac (sp?) you all are talking about? Bless you all for helping me out....... Marcia

Where can you purchase this from? Is there a place online?

Chemar, What tics does your son have that kids tease him about? Is he just facial or are limbs involved? Even though Devyn is only in 4th, I have already started to prepare myself to homeschool him once he gets to middle school as I couldn't bear the teasing he might have to endure. Of course, he also has the anxiety disorder so it becomes a double whammy for him. How much have the supplemtns helped your sons tics? Marcia

Heather, I went to the Vitamin SHoppe online and found the Magnesium Taurate - 125 mg. What dosage would I give him - 1 pill, 2 pills??? What else should I get - Calcium, Zinc, etc.? What dosages? Are they best to give in the morning, the evening or both? Regarding what you said about the tics being related to the food and environment, is it then fair to say our kids have Tourettes when it might be environmental/food allergies? This gets me confused. We have a TS diagnosis but yet, regarding all the folks on this site, the tics are pointing more towards allergies than towards a neurological condition. I am trying to reach my own comfort level and I have so many questions that need answers. I know you all will "bear with me" on this! One of my other questions that seems to keep getting missed is the waxing and waning. If a TS diagnosis is made, then aren't the tics supposed to wax and wane? If a child is not doing this, is it still considered TS? Devyn tics without any relief. He has no periods where there are no tics, except when he sleeps. From reading the posts, it seems that most kids go in periods to ticcing and then slow down or stop for a period. Devyn also doesn't appear to suppress them either. It is a 24/7 bout of tics with the exception of sleep. This is a big question for me. Once I hear from you all, I am going to place an order online at Vitamin Shoppe and see how that goes. It is certainly cheaper than Bonnie's, although I would rather have hers, but finances will not allow that at this time. Please let me know what vitamins/supplements to start off with and at what dosage. If I call and make an appointment at the ENT here in town, do I ask them for the IgG blood test? Devyn was seen there about a year ago and they did minor bloodwork as he has allergy shiners and I wanted to find out what he was allergic to. He came back negative on whatever they did test for (not much) but they said children are frequently allergic to milk even though the test comes back negative so I went ahead and took him off of all dairy as he was having constant stomach troubles and headaches. They seemed to disappear once the dairy was eliminated so I guess what they were saying was true. But I need to be very specific in what I ask them for now, which is where you all need to tell me what to ask for. Also, how do I find out if we might have mold in the house? None is visable, but I've heard houses can be full of it even though you can't see any. What else do I do in the house to help me out? I feel like such an idiot asking all these questions as I am usually the one leading others in their attempts to do something. This has just got me totally overwhlemed to the point where I can't think anymore. I really appreciate your opinions! Thanks! Marcia

Oh Helene...... It is so tough trying to figure this all out! I am exhausted each day from staying up all night reading, reading, reading all these posts! Just so much to comprehend. I was ready to order Bonnie's supplements until I read a post somewhere that said her supplements made her son's tic worse, so I am now back to square one. I have a couple of questions that I can't seem to get answered and hopefully someone reading this can guide me: My son has had tics every day, all day long, 24/7. Aren't tics supposed to "wax and wane"? He has NEVER had even a slight break from the tics. Is this normal? Could this not be TS and be some type of allergic response to something? Once he was bumped up in dosage on the Prozac, he immediately started the eye rolling and started walking pidgeon-toed. Could this be from the Prozac? I immediately weaned him from it and am now so sad that I ever let him take that %$@# !!! He looks so pitiful with his eyes rolling back into his head. My heart just hurts so much for him. With all the talk about being allergic to this and that......could the tics that our kids experience actually be related to the food, environment and NOT TS??? My son was diagnosed in November with TS and I just wonder if it couldn't actually be something else. He has had eye twitching and nose scrunching for well over a year. For just about a month during that time was he sniffing. I am so confused as to what to do. There are SO MANY types of Magnesium, Calcium and Zinc with "this and that" and so many dosages...I am just about ready to throw my hands up and say I give up! I need someone to hold me hand and lead me as to what to do next. I promised my little man that I would do my best to try and fix him and I don't want to go back on my word. Most of you are so experienced in this. Us "newbies" are really having a tough time trying to figure out what to buy, how much to get, what dosages, which test to do next, etc. I am just worn out from trying to figure everything out. If someone could answer my questions above, that would at least be a start. Next, I need a "grocery list" of what exactly to buy for him - 10 years old, 65 pounds (about). I went to GNC and talked to them about the Magnesium with Taurate and they were clueless. I am so grateful for all of you Moms and Dads out there who are willing to lead us along on our journey down this unwanted road. It certainly makes life more bearable. Thank you to you all........

Does anyone know if insurance will pay for the IgG tests?? We live in West Virginia and there are NO doctors around who do anything like alternative medicines, homeopathic, etc. We are sunk! I desperately want to find out what all my son is allergic to. He has a supposed milk allergy and has been off of ALL dairy for almost a year. He tics ALL THE TIME! There has been no waxing or waning, EVER. Is this normal? I have a gut instinct that he has numerous allergies and I just don't know where to begin. I thought of Bonnie's supplements but they are expensive and he will have to take nmerous pills twice a day which he said he won't do. Then, there are soooooooooo many vitamins and supplements out there that I have no idea what to get. I am just overwhelmed by what I should do. My son was diagnosed in November with TS (no family history) and has facial tics. He also has a anxiety disorder. He has the "allergy shiners" that I thought would disappear after he stopped consuming dairy, but they are still there. We also have no health food stores around and couldn't really afford one anyway. What do I do???? Sign me........."A very confused Mom in hillbilly land"

What show is she on and at what time will it be on???? Thanks!

Whew-Hew!!! I have no scrap paper left! My desk has notes EVERYWHERE!!! Thanks for all the input. I am pretty overwhelmed, though. Okay....I hopped onto VitaminShoppe.com and seen a Mag/Taurare by Cardiovascular Research and it had SHPIKES on the front of it. Is this the one you are speaking of, Heather? I then looked at the Calcium 800mg and there are pages and pages of them! Which one do I choose? Does anyone who uses Vitamin Shoppe have the exact names of the ones you use? Also, the 800 mg. of Calcium, 400 mg. of Mag/Taurate, 25 mg. of Zinc and 50 mg. of B6 seem like this is okay to start out with. I actually think Devyn is closer to 70 pounds than 60. The prices on the website are certainly cheaper than Bonnie's although I know Bonnie knows what she is talking about. Oh....so many decisions! As far as diet eliminations, what sequence should I start off with as far as which one to "check" first. How long do I eliminate the items for - 1 week or 2? If the tics decrease, how do I know if it is due to the vitamins or to the food elimination? Geez...I am so glad I got him off the the Prozac!!! She wants to put him on Clonodine next! WHOA to her!! The Prozac has made him so wild.....not in a bad way....he just can't seem to sit still. Plus, I previously said about the severe eye rolling, he also is walking with his toes pointed inward! Do you think this would be from the Prozac, too? He has never done this before. It has been a week since I "pulled the plug" on the Prozac. Do you think it is completely out of his system by now? She seems to be very educated on Tourettes as she has quite a large amount of kids with TS that she works with. It nakes a person wonder who is valid in today's society?!?!?!? Are you all saying that tics could NOT be Tourettes but could be just food allergies/yeast/etc.???? Even though he has DAILY tics with no waxing or waning and had a minor bout of sniffing for a few weeks and no KNOWN TS in either family, might he not have TS??? I also wonder about the 24/7 tics with no slowing down or letting up. Is this "normal" in TS?? Devyn is a WHIZ in school and has beautiful penmenship, which seems to be 2 traits that he should NOT have if he has TS. He did have a "tic" where he would pull the skin down below his nose, as if stretching it with his mouth, for about a year. This was a couple of years ago. I thought it was nerves. Oh, gosh....I am so confused and my mind is going in so many directions! I guess I am just hoping that, deep down, he does NOT HAVE TS and some other tic problem. Gosh....I wish you all lived across the street!!!!! Marcia

Thanks, Claire, for the names of the doctors. They are a bit far but I will continue to look for someone. If I decide to forego Bonnie's supplements and just go to GNC, for instance, what do you all suggest that I start Devyn out on as far as what supplements to take and at what dosages? He is 10 years old and weighs 60+ pounds. He is a poor eater, mostly due to the lack of what he is able to eat due to the milk allergy. How long will it take for the Prozac to be completely out of his body? It has been 6 days so far. With kids who are allergic to just about everything (artificial colors, sweeteners, high fructose, etc.), what is there left to feed them???? In dealing with this milk allergy for almost a year now, my poor child is limited in what he can eat already. What is left if he has more food allergies (and I'm positive he does)?? We have no health fod stores around and even if we did, who can afford to pay their prices? We are working on a very limited budget right now and just buying "special" items for him to have to replace dairy us quite expensive. We can't afford any more unless the rest of us stop eating! Ugh...........so much to worry about................ Marcia

Hummmm....lots of things to think about!! How do I go about testing for all the various things you suggested could be causing the problem? Also, I have looked into Alternative Medicine doctors, etc. and, since we live in a small town, there is no one around unless we travel into another state and with things the way they are right now, that is next to impossible. We live about an hour from Morgantown, West Virginia but I can't seem to find anyone there either. I would love to have him tested for more allergies (the RAST test) but everyone says insurance doesn't pay for it so we are sunk there. So, I just don't know where to begin. I promised him I would "fix" him and I will, I just need someone to tell me step by step what to do, in what order to do it and just guide me along. You all are like angels who are here to guide us down the right paths for our children. Bless you all..... Marcia Oh, in response to the Prozac issue, the Neuro ASSURED me that Prozac was the SAFEST drug to give a child because it has been on the market the longest. I am so glad my gut instinct forced me to get him off of it!

Hi All! I posted here a few months ago as I suspected my son MIGHT have TS. We seen a Pediatric Neurologist in November who diagnosed him with TS, even though there is no known TS on either side of the family. Devyn currently has had eye twitching and nose/mouth stretching for over a year. During this time, he also had a short time of sniffing. I am concerned, though, as he has twitched EVERY DAY, all day long, for over a year. There has been no waxing and/or waning. I figured there might be a period of little to no tics during this time. His Neuro put him on 10 mg of Prozac. The first week was great - his tics had slowed down sooooo much! Then , they cam back, so she bumped him up to 15 mg. No change, so she bumped him up to 20 mg. He started bouncing off the walls and started a very severe eye rolling tic. It is heartbreaking to look at him. He said he doesn't even realize his eyes are rolling! Anyway, I went the medication route because he also was diagnosed years ago with Selective Mutism, a social anxiety disorder. He is non-verbal in school because of this. Since he was being teased about his tics, we thought maybe the Prozac would kill 2 birds with 1 stone - help him with the anxiety disorder AND help diminish the tics. To make a long story short, I have weaned him off of the Prozac. This is day 3 without it and the eye rolling is still pretty intense. I contaced Bonnie about her supplements and, as of right now, am going to order them probably within the next 2 days. Do you all think the vitamins are the price or is there something else that might be just as good? My goal this year is to get my son as "tic free" as possible by doing whatever it takes. He also has a supposed milk allergy and has been off of all dairy since March of 2004, plus he has genetic high cholesterol. Quite a lot on his plate. If I do an elimination diet, what should I eliminate first, second, etc.? There is so much to do...I just don't know what to do first! Also, my 7 year old daughter has just started moving her mouth sideways all the time. Could this just be a transient tic? Fear is keeping me in a constant state of pamic. I trust everyone's judgement on this site and thank God you all are here!

Me, too! I am looking for someone in the vicinity of Morgantown, West Virginia. We have NO ONE around here! Our pediatric neurologist prescribed Prozac and it made the tics worse. HELP!!

Hi Lawsmith, I found this site the other night and am grateful for all the info everyone has already shared with me. My son is also 9 and having tics. My original post is under "The7roses". I won't write it all over again but please read everyone's comments to me. I just went and bought the Mag/Cal/Zinc supplements. May I please ask how many milligrams you are giving your son? Also, how much for the B12, B-complex and evening primrose. I am too new to all of this and am struggling with all I need to do. I decided to start with the supplements and multivitamins and pray that is what his body is lacking. Does your son have any food allergies? Devyn complained of stomach pain for 3-4 years and everyone blamed it on his nerves (he has an anxiety disorder). I took him off of all dairy 3 months ago and his tummy troubles are about 95% gone. He still complains once in a while so I figure there must be something else that is bothering him, too, so I guess I will also have to start the food elimination process. This group of Moms in the forum will educate you and be by your side every step of the way! They took me from being a sobbing zombie to a Mom with some hope for a decent future. I, like you, must start reading every one of the posts here. I think you and I will do just fine! Marcia

Hello, Hello!! Just to keep you all posted, I went and got the Spring Valley Calcium/Magnesium/Zinc suplements. The pharmacist said to start off easy as these capsules have 333 mg. of calcium, 133 mg. of magnesium and 5 mg. of zinc. She said some kids can't tolerate too much all at once and, if he did okay with this amount after a week or so, I could give him 2 capsules daily instead of one. Do you think this is okay?? Also, all of the kids vitamins have dye in them and she said the adult brands are too much for a child so she suggested the Poly ViSol infant vitamins at 2 droppers full a day. Do you all think these are good to start with? My little Devyn is kind of overwhelmed at all I've been telling him. He is willing to try most of it except for the TV part, as he loves sports. This kid turns on ESPN to catch up on the scores before he goes to school each day. That one is going to be tough for him. I'm just going to start off with the supplements, then we'll try and do the TV and if neither of them work, we'll start on the food. I've been watching him like a hawk for the past 2 days to see if any if the tics are slowing down. How long should I wait before I would see an improvement with the vitamins? And, since there doesn't appear to be TS in the families, that we are aware of, am I safe to assume he just has the transient tics? Tell me more about them, if any of you would. How are they so much different from TS? Again, I am just so relieved tohave you all at the touch of my fingertips! I feel like I now have a 24 hour lifeline. If I think of something I don;t know an answer to, all I need to do is turn to you. How comforting. You all are my angels.........

Chemar, I have my list and am going to Walmart tomorrow. I feel more comfortable with you telling me what to do than if a doctor were telling me! The best advice is what you get from someone who "has been there - done that". I know the Pharmacist there and he knows my Devyn and I know he will show me exactly what to get on your list. I have a little Prayer box that one of my girls made at evening Church and it says "Place your worries in this box throughout the day, then send them up to God when at night you pray". I got this little box out last night and scribbled a little note on it to please send me help for my son and placed it in the box. Need I say more......................

Oh. you all......as I sit here and read your posts, I cried AGAIN! Yes, I am a worry-wort of a Mother. I did not sleep last night worrying about what might be on these posts today. As I came onto this site today, my stomach was full of knots wondering what is was I would read. God Bless ALL of you for your kind words and your knowledge! I am feeling some relief as I read your caring words. Thank you from the bottom of my heart. The best thing I could have done for MYSELF was to open the door to your web site. I can see some light at the end of the tunnel, whereas last night, I was in total darkness. I feel honored to have "met" you all. In response to your questions, as far as I know, no one on my side or my husbands side of the family has ever had TS. I have not seen my father since I was a baby so I have no idea about his side. Does TS have to be inherited? And yes...I watched the show about the guy who had the brain surgery and that is what got me started. My husband also worked with a man who has TS and he said he would bark, jerk, make sounds all the time, and have constant twitching. He said it was sad to see him suffer so but he rarely missed work because of it! I have been my son's advocate for the past 5 years with the Selective Mutism and have seen how hard it is to get things done for a child who has a need for that extra push. It has been a tough road for him already and the thought of something new consuming his life on top of this just tears me down. I watch him out of the corner of my eye and my heart breaks to see his handsome little face so contorted at times. I have read some horrid sites on the Internet talking about the worst of the worst cases of TS. I always seem to end up on those sites. Thank you all for setting me straight that TS is not as devasting as what I have read. I felt like I was suffocating under the fear of what was behind this door. Now, I can breathe a bit better thanks to you all. We are going to try the TV bit and see what happens. He doesn't want to miss computer lab in school so we will start next week for the 7 days. What kind of vitamins, and what brands, do you suggest? I read so many posts last night and starting writing things down and ended up with a huge list. Since money is tight now, what would be the "cream of the crop" vitamins and oils to try first? Gosh, I can't wait to get back on and see what wonderful ideas and thoughts you have left for me. Thank you so very, very much!

One other thing I forgot to mention.....he does sniff all the time. I guess that would be the vocal part and the facial twitching the motor? The more I read, the more I cry. What do I do??? I am so scared.............

Oh...I am so scared about this. Of course I will do ANYTHING for him. I have read so much on the Internet about just tics - no assiciation with TS - and I am hopeful this is only what it is, just a tic in passing. SO many sites say it is so common for children to have just that. But, in the meantime, I am just mortified of TS, too. Could it be?? How long do I play the waiting game to see if anything else developes? He also has a anxiety disorder called Selective Mutism, which is mainly predominant in the school setting. He will become mute around people he does not know or in any type of social setting. We have pretty much mastered this. He has done so well in school this year and is so aware that he is a tad "different" in school. I just can't bear adding anything like tics to what he already has to deal with. How are children expected to deal with everything they are given in life? My heart is so heavy with a new worry for him. As I type this,, I am cryng because I am so scared. Can someone outline what the beginning, middle and final stages of TS is? If he is now experiencing eye ticks and minor facial ticks, how long before the next "thing" happens in TS. Since I can't go to a doctor at this time, I need you all to guide me. If he does have TS, will he end up with no control of his arms, legs and other body movements? That is enough to make a person suicidal, isn't it, especially a child. Are there different degrees of TS? If it is going to be the type with no control of arms and legs, does it start out worse than just eye twitching? I thank any and all of you who will help me through this. I am just falling apaprt of the thought.....

I don't know what to do. About 6 months ago, my 9 year old son started eye twitching. It was rapid some days and included nose twitching and/or a facial type of tic where he would scrunch up his cheek. Some days it was bad, other days it was very minor. We found out 3 months ago that he supposedly had a milk allergy and took him off of all milk products as he was always complaining of stomach aches. He now barely complains of his stomach hurting anymore and the tics are not as bad. He still has eye twitching, more on one eye than both. I've noticed that he will once in a while open his mouth like he is going to yawn and stops before he completes the yawn, as if it was only a fake yawn. There is no family members with TS and everyone thinks he is just "going through a phase". He does get worse when he is dealing with stress...his little face seems to go non-stop until the stress is calmed. I am hoping this is one of those tics that is here for a while and will be on it's way down the raod, never to be seen again. I just found this site this evening and, after reading everything about the tics and allergies, could this all be related with TS having little to do with it? This is quite confusing. If it could be related to food allergies, what do I do next? He had blood work done for allergies and it came back negatie but they still suggested taking him off of dairy products which has worked great. We are currently without any health insurance as my husband was just laid off so I can't take him anywhere right now. I will take any and all suggestions you all can give. You are seem to know what you are talking about. I basically want to know if this sounds like TS and if the tics that started 6 months ago could be related to the stoppage of dairy 3 months ago somehow and if so, what do I do? Thanks sooooooooo much!!