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mom2three

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  1. Carolyn, I have a question. I read through your post and am very interested in having my daughter try the NAC and the Potassium Bicarb. I have a question though, I read that you give your son 1200mg a day of the NAC, is that based on his weight and age? My daughter is 12 and weighs about 80 pounds. Would I give her the same amount or just the 600mg. Also how much Bicarb do you give him (dosage). I read that you make your own pills but is it available to buy in capsules? I am just curious as to what dosage/amount of the bicarb I would give her. Right now I give her the magnesium and the b-complex. She suffers from tics (vocal and motor) we go through bad and good periods.. A few months ago (around xmas) I was on this board constantly because she was doing really bad.. Lately though she is more mild with her tics. However we are never tic free. So I am hopeful that like you, I will eventually stumble upon something that will be the answer for her. I have tried bonnies vitamins and lots of other stuff over the years but have never thought to try the NAC or pot bicarb. Thanks for any answers
  2. Thank you for all the links and information. I am going to have to take it slow regarding all this since its so overwhelming. I know this weekend she had a "diet" drink. One of her friends moms had some of those crystal light flavored packs that are small that you can dump right into the water bottles. Well she didn't know about any of this and let my daughter have a rasperry one to dump into her water bottle. I found this out later. It was full of that aspartemne (sorry for the misspelling) Well all night she was Flying.. Extra tics.. Way to much energy, hard to reason with, etc.. So I really do see what you are all saying about this stuff. I am going to try and pull the MSG stuff and see what happens. I never really thought about it before or realized how sneaky it is in our foods with different names. I'll have to plan out some menus first though and make sure I have enough non msg things in the house.
  3. I have a hard time being so matter of fact like many of you are. My daughter is currently caught up on every "required" shot there is. however, I am hesitant from her recieving certain shots that will be required coming up (her next visit) See I don't think in her case her tics came from these immunizations since the timing just wasn't there.. However, how do any of us really know what causes what since some things can take a while to show up while other things show up right away.. I know we don't live in a country with bad sewage systems, and filth and disease everywhere but I still worry about my children contracting these diseases from others who either come in from other countries or from those who have not been immunizied and could be carrying things. I agree with what everyone is saying regarding the dangers of what is really in these shots but.. I still can't get the image out of my head of what the poor kids who contract some of these diseases go through to survive if they even do. Has anyone seen what whooping cough does to a child or heard what it sounds like? you would NEVER want your child to go through that. What about measles or mumps or rubella.. I know that many survive having those things but not everyone does.. I just feel like if I do make the decision that she has NO MORE shots, will something happen down the road that I could have protected her from. I just worry about that. So where is the line? It is hard to say (for me) yes or no to these shots but I really think you do have to put a lot more thought into it then the information sheet the doctor hands you. Our next visit (yearly physical) she'll be up for the chicken pox booster (which I want to pass on) the new shot for girls (forget the name) and another booster for something else. (my brain is foggy this morning - but I have all the info written down in my purse) Not sure what I will do. Its very hard to regarding what is required by state and all the hoops you have to go through if you do chose not to have the shots, regarding schools.. Tough choice for me.
  4. Just a question for all of you who say NO MORE SHOTS Have you thought about what NOT getting these shots really mean if your child somehow contracts the disease that these shots are protecting them from? That is where I run into the problem of making a statement saying I will never allow my child to get anymore immunizations. I understand that alot of these immunizations have side effects that do cause our children to tic more or to have problems but are those problems the shots are causing worse or less worse then if the child contrats the disease they are being protected from? I know a lot of these diseases are now unhead of because so many people did have the immunizations but there is still a chance that they could get them. That is what I think about. Eariler this year infact whooping cough was in my area and 2 kids in my daughters middle school were pulled out because of it. I am just curious how you weigh the risks. See I would also rather my child NOT have the side effects or things that are associated with the shots, but I refused to play the lottery of them being exposed to a disease or an illness I could have protected them from. I know tics are a horrible thing for my daughter to live with but at least she can LIVE with them. If she gets exposed to a deadly disease she may not be as lucky. Just curious what others think.
  5. How do I find out what phenol/lsalicylates is in as well as all the names for MSG. and is it all the same kind of MSG under different names or just similar? thanks
  6. So totally ironically.. the doctors office called me a few minutes ago to tell me the results of my daughters bloodwork. Everything showed in normal ranges. So back to square one. However, all the vitamin levels they tested also showed within the normal ranges, not high even though she takes so many vitamins.. So does that mean I am on the right track with her lacking these vitamins? If she wasn't lacking them wouldn't it all show up as high? The only thing that was slightly elevated was potassium but it was still within normal range. Ahhh
  7. From what I read she doesn't have all those symptoms? but who really knows what it is. I wish someone could tell me. I know there is a fix somewhere
  8. She does get some things with those additives in there. I haven't totally "cleaned" her diet up but I don't give her a lot of things either.
  9. Have you tried the benadryl since? Did it take the tics away (if you did)
  10. Did the tests include kidneys and all as well? have you tried any specialists? Is his tic causing him to push as if he were trying to pee? Maybe that could be why he feels it all the time? Not sure. Sorry I am not much help.
  11. I remember how scary it was when all this started for us. My advice would be to start him on some of the vitamins. Not sure if boys are the same as girls but we had good luck for quite a while with 300 mg of magnesium (the kind recommended on here) a B-complex 50, and an extra B6 50mg.. Also I gave her calcium a few times a week (or just upped the milk drinking) and a good multivitiman. I also tried to cut out anything with blue and red dyes in it and really junky sugary foods. Plus I put a lot more healthier things in her diet. This seemed to make quite a difference. Tics don't always mean tourettes. I had a friend who's son tic'ed terrible during the age of 10-11 and then as he aged it went away and now he is grown and has not ever had a problem with tics again. So you never know. Just take it one day at a time. That is all we can do since it is all so overwhelming. Good luck
  12. An update.. I still feel like I am in the same boat only I have calmed down inside a bit more. I am no longer freaking out. My daughter is still the same. I am not even sure if they are tics? I mean I know they are but they aren't the kind she used to have. She is still clenching her muscles very tightly. she is as stiff as a board. She is so sensitive to everything. if you touch her or brush against her she reacts so strongly as she doesn't like to be touched at all. She says it hurts because her muscles are very sore. Which of course they would be since they are clenched tight constantly. I noticed the other day that she was brusing very easily. She was sitting on the bench at her basketball game and just leaning her elbows on her knee area. When she stood up she had light bruises where her elbows had been. I took her to the peditrician monday and they ordered up a bunch of blood work for her to figure out if something else is happening as she shouldn't bruise so easily. I worry about what it could be if anything. Seems like everything we try leads to a dead end. The doc ordered a test for her muscles too, to see if anything is off there as well. To answer some of the questions that have been posted here, She was diagnosed by a neuroligist to have tourettes syndrome back when she was in 3rd grade (around that age) by then she had been ticing for well over a year both motor and vocal tics. For the past few years things have been good. Tics were very mild or non existant.. She had been taking 300 mg of magnesium as well as a B-Complex 50 and an extra 50mg B6 vitamin as well as a good multivitiaman. Then this fall she started ticing again. Mild at first but getting more and more as the weeks went by. I tried uping her vitamins as her body weight was more then when I had origianlly calculated the doses. But that didn't seem to help. On NYE day she went into tic convulsions (not sure whatelse to call them) Her whole body was twisting as if she were dancing. It was a HORRIBLE week after that. She then began this terrible muscle clenching where she pulls her whole body stiff and holds it constantly. She is very VERY moody. She acts very young now, cries alot, is impossible to reason with and is very VERY OCD about so many things now that she really didn't care about before. I have had her tested for strep, (yes blood titer tested) I have had her allergy tested for foods and eviromental stuff. She didn't show any allergies to food, but showed a lot of enviromental allergies. We have her on allergy medication now and have tried to eliminate any of the allergy triggers but that has made NO difference. I purchased the vitamins offered by Bonnie and she has been on them for almost 2 weeks now. This has made NO difference. I am waiting on the blood work to comeback and if that doesn't show anything, I am not sure where to go from here. I am not sure if taking her to a neurologist would help? What would they do for her? I don't want her on of medication if I can help it. I have also thought of taking her to a child psychristist to see if that would help? maybe with the OCD stuff? Maybe with helping her relax? But not sure if that would help or make things worse? Basically we are just living one day at a time. thankfully though I have my husband here who has been a big help when I have my melt downs (lol) And I thank GOD everyday that both my boys don't show any signs of having these problems. Hopefully we figure something out soon. I have a thought though, If anyone is even still reading this (lol).. Sorry its so long. Here is my thought.. She is 11 yrs old (12 in 8 weeks) Could this be hormone related due to puberty? Could this onset and jump in tics be so excessive due to her getting ready to get her period? Her body hasn't really started to develop yet though so I don't think she is quite ready for the period yet.. But the hormones could be there right? Oh I don't know.. I wish I had a magic book of answers.. This is all so frustrating. Thanks to everyone who read this post and all who have offered their advice and help to me.
  13. Thank you for all the support. We had the first allergy visit this morning. It went well. They did the tests on the skin today, the doctor said that is where he likes to start but assured me he will keep testing her until we find what is triggering her. (if its allergy related) the foods were fine. No symptoms at all for any dairy, fish, yeast, soy, etc.. But I don't think it is foods. Maybe chemicals (like msg) etc... but not foods, so I wasn't surprised that nothing jumped out there. What really developed was ragweed, she had a very strong reaction to that and also to dustmites as well as molds and various other trees, pollens etc.. He also said she was still suffering from her cold.. (running nose, post nasal drip etc).. I had taken her to the doc but they said it was only a virus and to let it run its course etc.. But he said since its been 3-4 weeks and she still has it he would put her on an antibiotic. Also, he said her nose and throat were very red and aggitated. He also gave her allerga (spelling?) for her allergies. We came home and cleaned her room from top to bottom.. I threw out all the old dolls, stuffed animals, old pillows and piles of junk she had accumulated in her room. We did the windows, fans, scrubbed the walls, pictures, bedding, book case, etc.. now all is nice and clean.. I am also going to get the bedding wraps for her mattress and pillows. He gave her an allergy dose while we were there and just a few hours later she is feeling much better.. I am crossing my fingers that this is the right direction.. I am to nervous to truely be happy yet as this could just be a fluke and she could be back to ticing badly later. For now he is having her on the allerga as well as the singular and the flonase.. Then as things improve he will decided whether or not to take her off the singular or allergra based on her improvments. I also told him about the vitamins and bonnie's vitamins that I ordered. He suggested having the peditrician test her blood to make sure all her vitamin levels are within a good range since to much of certain vitamins can lead to problems as well. I am happy with the visit over all. I feel like this is the first time we've had some progress in the right direction. We go back in 2 weeks to see how she is doing and to get further testing. I think this is the first day in weeks that I didn't feel like my head was going to burst from stress or worry. thank you all again for your suggestions and help.
  14. I feel so overwhelmed!!! I just wanna cry, or scream, or run away.. I feel like doors are just being slammed in our face. Everytime I feel like we are making some progress we are forced 10 steps back. I know this won't be like this forever but it is so hard to get through it. I have no one to talk to about all this because no one I know has gone through this. My poor daughter is going through so much right now. I've posted before but I will just sum it up in case someone is reading my posts for the first time. (short version) My daughter started ticing in 2nd grade.. We didn't notice at first, assumed they were just annoying habits etc.. It wasn't until 4th grade that we had her properly diagnosed. 4th grade was our worst year. She had lots of "big" tics that were very noticable and she had a very rough year being teased and adjusting etc.. (yes she was diagnosed with tourettes) That was when i found this board. I did research on some vitamins and took some free advice from many of you. The vitamins really helped.. for the past (almost) 2 years she has been doing really well. (90% tic free) She is currently in 6th grade and was doing very well until about 3 weeks ago. She started with some tics but nothing major. Each day they seemed to be getting more intense and were the type that really tire out and hurt her muscles. On New Years eve day I tried giving her some Rescue Remedy to calm her a bit.. Well something in it affected her and she went crazy with the tics. So badly I thought I would have to rush her to the hospital. She looked like she was dancing, doing the twist or something.. Over the past few days/weeks it has be cycles of this. Bad tics only stopped by her clenching up all her muscles.. I immediately came back to these boards to find help. (thank you to all of you) I really thought it was the PANDAS. She was sick and we have been around others who had strep, although she never actually had it. I had her blood tested and her results were within normal range. The doctor said they were read correctly. She had all the symptoms for pandas except the urinating problem. Her moods have been off the chart lately, which is understandable considering the amount of pain her poor body is in. But she is also very hard to reason with sometimes, she is very VERY clingy.. She also has gone from acting older (more teen like) to reverting to being much younger. (acts very baby like - cute-sie etc) also MAJORLY OCD about quite a few things. Tomorrow we have an appt with the allergist. I really am praying that most of this is some sort of reaction to an allergy. I am not sure WHAT to ask them to specifically test for, although I have made a list of things/tests that I found on this board. I also am waiting for the neurologist to get back to us regarding an appt. I want them to do more testing on her to rule out other causes as well. Tonight I placed an order for Bonnie's vitamins.. The most expensive amount of money i have ever spent on vitamins but I have to find something that will help her. It kills me to look at her in such pain from the violent way her muscles are contracting and not be able to give her some relief. I ordered the TS plus control, the TS mag tauratte, and the epa/dha She recommeded that I order the control, and epa/dha.. I decided on my own to go with the taurate since she is waxing so badly now. For those of you using these vitamins how many do you give your child and do you break them up into doses, do you mix them with food or just let the child swallow the pills? (curious as to what works best since they have to take so many) Sorry to write such a book here but I am just loosing my mind. Many of my so called friends don't understand what we are going through right now. They see my daughter who appears to be perfectly normal on the outside and think I am making this stuff up. They can't understand how she clenches her muscles while around others so they can't see her tics.. They don't see her at night when she has her melt down and her poor little body shakes and shakes.. They don't deal with the tears and pain she is in.. Her moods are very affected by all this and these "friends" think I am spoiling her since I don't "Yell" and discipline her the same way I do my boys (who don't have these conditions) I am so frustrated in my life now. I am inches to just packing our lives up and running away to some big ranch in montana.. (okay not really serious, but sometimes I just want to get away from extended family and so called nosey friends) I know this also could be hormone related since she is 11 and could be getting her monthly cycle soon. I know from reading this board that her age is a "HUGE" ticing time.. I just feel like we are never going to get through this time. Again thank you to all of you for your advice and allowing me to vent. And thank you to anyone who can answer my question on the vitamin dosage (bonnie's vit) i am one stressed out mom
  15. I do encourage her to let them out. She says that if she holds them in or lets them out they hurt her the same. So she would rather hold them in, since they interfere with what she is trying to do. I have just been keeping her as calm as I can, trying to avoid stress.. I've also been keeping her busy with exercise even though I'd rather just have her calm. I have read that exercise is actually good for her. and yes, when she was in 4th grade she was diagnosed by a neurologist. By that point she'd been ticing on and off for approx. 2 years and had both motor and vocal tics.
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