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Showing content with the highest reputation on 08/10/2019 in all areas

  1. The vetiver seems to help our sons tics the most. We’re not really sure what it does other than possibly slow down the nerve sensory overload to the brain some. We apply it in the morning on his big toe when he’s getting dressed for school.
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  2. Sunflower78, YOU ARE NOT ALONE! There is a community of support who can and will listen and understand what you're going through, direct you to resources, tell you what has worked for them (elimination of gluten for us for sure), and give you hope. That was about the same time my son's tics started, and it has been a long, fascinating journey. If this is any comfort, he is presently a thriving 15 year old who plays football, is the deepest thinker I've ever met, kind and empathetic to others, and a most marvelous human being. As far as the guilt goes, that is tough, but I try to remem
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  3. I've been dealing with tics since my childhood. I am 24 years old. I've tried tons of methods. I've found 2 good ways by myself to reduce tics. I have Neck moving right and left, breath out many times loudly and tighten my legs etc. So I've tried to push tics away, not responding any pressure any tics but made worse and then I've tried to direct my tics. Let me explain with my poor english. First tip; My goal is reducing "visibility". Because i'm tired stopping tics completely. When I feel the pressure to "breath out or neck moving"(more visible tics) i tighten my legs(less vi
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  4. Stacie M

    Hand strength

    Oh this is so helpful! I will definitely be doing this tonight. Thank you!
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  5. Hi Sunflower78 So sorry to hear of what you are going through. As a mom who was in that same state of anguish almost 20 years ago, I absolutely understand. But I so agree with Sheila that you should not blame yourself. There are so many possible causative factors that can trigger tics. We can beat ourselves up, or we can focus on trying to find the best ways to make things better. It was thanks to Sheila and this forum that I was able to follow the latter course, and thankfully things started to improve for my son. In our case, my son does have a genetic TS component, but even so, many th
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  6. Hi Sunflower78--welcome to the Forums. You sound like a wonderful mom and all the efforts you have made to stay green, breastfeed and eat clean have no doubt helped your son. Please don't assume it was the vaccines or that you did anything wrong. Many, MANY kids have symptoms just like your boy. Sometimes they go away on their own, sometimes it takes extra steps to find the cause and then go from there. You are right that there is no way this could be considered Tourette's (Geez!). I apologize that I am out of town and have to get off the computer but will check in soon. Don't desp
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  7. We found the best B6 to use was the activated P-5-P form. European Union countries outlawed the food dyes and other dangerous additives a while back! Shocks me that this country hasn't especially as natural food dyes do the job well without the danger! (eg beets, blueberries etc.) M&Ms in England have these natural colourings so there is no real reason imo that they can;t use them here too!
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  8. To add to my wife’s comments. The peanut butter and jelly we get is also all natural. Smuckers brand has all natural at Walmart and Jiff and Peter Pan peanut butter offers all natural options. We are Just fortunate our son loves peanut butter and jelly sandwiches and eats them every day at school for lunch. When he starts middle School we might be able to send things we make at home that he can heat up at school himself but we will cross that bridge when we get there. We also deal with the birthday parties and keeping him away from school foods. It’s hard. But we have told him he also has to d
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  9. Hope36, I am so glad you saw our post. We started noticing certain foods would make his tics more noticeable & more out of control. We started removing all processed meats, especially hotdogs & brawts. We found these always made his tics flare up. We also cut out pizza, except for gluten free. We don’t believe he has a gluten allergy. However, most gluten free foods are also more natural with no preservatives & additives, which we believe affect our son. We also never eat Chinese food because of the MSG in it. It makes his tics awful. I buy only breads that state no high fruc
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  10. So sorry to hear all this! Have you tried https://www.amyjoysmithnp.com/ ? She just moved to a practice in Orange, CA and has worked with DS19 for about 5 yrs. to 'bring him back' to a better baseline.
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  11. I know exactly what you are feeling. I spent day & night trying to find hope, trying to find anything to help our son. I was very sad, so scared & very angry some days. I prayed daily God would take it from him & give it to me. I didn’t want to talk to anyone about it either & I was extra protective of him. I was so thankful I found the post regarding oils. It gave us our son back emotionally. He struggled so much at school. I also had a talk with all the parents we knew from school. I explained to them what he was dealing with and asked them to talk to their kids(his close fri
    1 point
  12. Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis.
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  13. Ibuprofen (aka advil, motrin) is for some (not all) a "resuce med" in a flare (you can't keep giving it indefinitely). It is definitely the case that some abx work and others not, and it varies from kid to kid and (likely?) by particular sickness for a child.. Haven't had the vomiting experience, but have had our fair share of mystery stomach aches. I have no experience with Colorado docs - am far away.
    1 point
  14. evemac

    Tics or tourettes

    I know it's hard not to despair, but my son who is now 14 was diagnosed when you was 5. We did so much for him: diet/vitamin protocol, Occupational therapy, chiropractic work, meds, CBIT, and I would say to some extent, all of these interventions helped. He feels pretty comfortable talking about having Tourettes and while he did have some difficulty with peers on occasion and I had to actually request a 504 by 8th grade to deal with the dysgraphia, I also give his teachers a well written article on disinhibition and what that could look like in class. I think advocacy and self-advocacy
    1 point
  15. Hello newfie (are you living on The Rock, or settled elsewhere?): Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements. One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would f
    1 point
  16. Hi, My son started to have tics the beginning of this summer. He had multiple tics such as shoulder, neck, hands and legs. He was ticking every second. After reading many postings on the platforms of this site and joined as an advanced member, I was able to read many useful articles about tics and OCD. It really helped me and reassured me. We have given my DS fish oil, multi vitamins and probiotics as supplements in addition to the traditional Chinese herbal medicine subscribed by a Traditional Chinese medicine doctor for a month and half now. His tics are no longer noticeable.
    1 point
  17. Thanks so much for the offer of help. I hadn't thought of mold and our old house had mold in their rooms (we moved 2 months ago). If you could send me the links to that information I would so appreciate it. My younger daughter had been test d for Lyme but it was negative. She had a condition that included low fevers, stomach pain, headaches, light sensitivity, and pain in her legs, so much so that she couldn't walk for over 14 months. Every 6 weeks or so something else would go wrong and it was truly awful. Especially because no one could/would help her. They just said it's not_____, and t
    1 point
  18. My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there
    1 point
  19. My son started w tics after an injury to the neck and head and then antibiotics. Then after each time he had antibiotics for small things, he had head tics. The last time it was nonstop movements after antibiotics. Every second or four seconds. It’s so sad. I don’t know what to do either.
    0 points
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