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JaneFBH

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Everything posted by JaneFBH

  1. Thanks again, Chemar. This has subsided a bit already. Not sure why.
  2. Hello - I've posted many times. My 12 year old DD has TS and has gone through multiple tics. We are doing everything - essential oils, magnesium, taurine, epsom salts, gluten free, dairy free, organic, CBT. The tics wax and wane as to be expected. Her eye rolling tic has gotten worse and gradually she has been developing a tic/OCD behavior with her right foot - she drags it sometimes and a few days ago starting hopping occasionally. Today, after breakfast, she won't walk. She can only hop on one foot. Cannot put her foot down. Please help.
  3. Has anyone had experience with the sniffing people and things tic? My 12 year old DD has TS and its fairly under control but a new tic has been slowly developing and now it is getting worse. At first she just occasionally sniffed my shoulder, a stuffed animal at bedtime and her pillow at bedtime. Now she is sniffing my shoulder every few minutes. It's been the weekend so not sure what it will be like in school. Any ideas/remedies? So many tics we have been through. Thank you.
  4. Thank you - yes I have seen Lifeway. I was concerned about the sugar but will try Lifeway. THANK YOU. Today was a better day.
  5. Thank you, Chemar - I know you are a guru here! I am curious about something you said - please explain what do you mean Kefir is not in the category of general dairy - if I am trying to avoid dairy for the reduction of tics do you think Kefir is OK? She really likes the evolve brand kefir but the first ingredient is milk, 2nd is sugar. But if she could tolerate just that each day, it would make life so much easier. She's very picky and I have to crush everything she takes, even tasty chewables. I put a few things in that kefir, and that seems to work well. I actually gave her two thing
  6. Hello - I've posted here several times and got great advice with good results - for the past two weeks my DD's TS has reduced by about 80% and she went to school a full day for 4 days - a first since early January. Thank you! But now she has a new tic - the awful eye roll. She is so uncomfortable - headaches constantly, out of school 2nd day now, can't possibly concentrate on schoolwork. I read that eliminating dairy can help, as well as magnesium. She was dairy free but we had her on a Kefir probiotic drink and were getting lazy with dairy - having cheese, etc. So I cut that all
  7. Thank you all! Great suggestions to try. I greatly appreciate your help.
  8. Hi there - I do believe the construction may be a trigger. However, I have some other thoughts - I am also very new to this but after much trial and error this is where we are. I also have celiac too and my DD age 12 seems to be gluten intolerant. She has full-blown TS with anxiety and OCD. We have recently seen an 80% improvement and I will tell you what we have done: She was already 99% gluten free and dairy free, and mostly low sugar. I also cut as much as possible any grains - so trying to do paleo but as much as I can with a picky 12 year old. Digestive enzymes and prob
  9. Thank you! I am going to try mixing things all together - I was always afraid it wouldn't be as effective. Aren't you supposed to take the probiotic away from food? Does anyone know if you can overdo the probiotics? For instance if she took a probiotic capsule AND had the Kefir every day? Thank you!!!!
  10. I have considered home schooling. Yes, my "math genius" who is now in 6th grade and excelled in math since kindergarten is now struggling and has a C, although she is in gifted and talented. (Too late in the year to switch out.) She has TS and math was the first thing to suffer, then reading concentration/comprehension. I have considered home schooling (but will not tell her that). However, school is working with us and she is on a modified schedule - comes home for study hall and lunch, then goes back. Most days this gives her the break she needs to get through the day but about once a
  11. I started my DD on 500 mg of Taurine daily last week because of this forum. She is age 12 with TS and severe screaming tic. I started Taurine tuesday after awful screaming tics on Monday. By Tuesday night tic had reduced by 80%. This week it is gone. We are doing other things too but I think the Taurine really helped with this specific tic.
  12. Hello - My DD age 12 has TS, including a screaming tic. Confirmed malabsorption and gut issues. We seem to be having some success with a regimen of 100% Gluten-free, 90% dairy free, moving toward GAPS diet, non-GMO, Young Living essential oils (massage and diffuser), 500 mg of Taurine, Therbiotic Probiotic and digestive enzymes with some meals. My problem is she dislikes taking any supplements - even chewables. The probiotic and enzymes are chewables that she will only take mixed with yogurt - which is dairy and sugar! She will not swallow pills. Does anyone have a probiotic and
  13. My DD has had many tics that have worsened over recent months. She is 12. She had an awful screaming tic recently. When I introduced 500 mg of Taurine daily, the screaming tics went down by about 90% seemingly overnight. She still has other tics, including eye blinking, but they have reduced at times. She is gluten free, mostly dairy free and we too are doing our best to do the GAPS diet. Almost impossible for a picky 12 year old. I also do the Young Living essential oils regimen, and she takes a probiotic and digestive enzymes. After 3 months of , we are seeing some improvement. Bu
  14. Hi there - would love to hear what people are doing regarding school. My DD is in middle school, so she switches classes all day long. She has a very hard time making it through the day. All the teachers and most kids knows she has TS, but she still is embarrassed and holds back louder tics then ends up doing softer, smaller ones more frequently, and then can't concentrate. She has a 504 and a modified plan where she can leave the classroom at any time and even does some half days to take the edge off. But it's still so tough. Thinking about home school/online learning but hate to take h
  15. I am so sorry to hear about the screaming tics. My DD is talking about having the urge to scream, but it hasn't happened yet. May I ask you - what are you doing about school? She is starting to have some trouble and has a modified plan, but wondering if I should home school? The school is being very understanding and accommodating, but I am just not sure she is learning much as she is so distracted.
  16. Thank you all for your replies. Appreciate your input so much. Some of it gives me hope, but sometimes it is so darn depressing. My DD has them the worst in school, when she knows she needs to be quiet she says the urge to tic is overwhelming and then she can't concentrate. We have a modified plan in place for her, but her grades are suffering. Looking into Cognitive Behavioral Therapy.
  17. All the success stories and info about magnesium and diet changes are so incredibly helpful. Would you please let us newbies know approximately how long before you saw results with these regimens? Understanding every child is different, it would be so helpful to have a gauge of some kind. Also, did tics decrease then increase at times? I would expect that is to be expected. Thank you.
  18. Your posts are so incredibly helpful. Thank you! I am so happy for you and your son. If you don't mind, please take a look at my post KidsCalm/Natural Calm. I am inspired by your story but just need help tweaking my DD's dose. Thank you again and all the best to you and your son.
  19. I am really needing some advice specific to my DD situation. 12-year old about 85 pounds. TS with eye blinking, facial grimaces and vocal tongue-clicking tics. Started about a week ago on Kids Calm and Elderberry as a result of success stories seen on this forum. Also bought Natural Calm because KidsCalm is only 240 mg of Magnesium and Natural Calm (for adults) is 325. My thinking is that she is almost adult sized I would add 1 tsp of Natural Calm to Kids Calm to up the magnesium. Also bought Taurine which I am planning to add to the mix today. After almost a week I do see a slight impr
  20. Hello - does anyone know of any tic/TS support groups for kids in the northern NJ area? My DD is 12 and I think a support group could really help her. Anyone have a child around that age who would be interested in emailing with her? She is really into theater and singing, which strangely enough seems to calm her tics signifcantly.
  21. Thank you all for this extremely hopeful and helpful thread. My daughter's tics also got much, much worse when we started looking into the cause and treating her - has anyone else had that experience? Waiting for more bloodwork to determine if PANS related. Question - Assuming not PANS - How long did it take to see results on different regimens? My DD is so sad, so tired of this interfering with her life. I have just started her on KidsCalm and am planning to add Taurine. She has been gluten free and virtually dairy free for almost 2 years since when tics first began (they just got wo
  22. Thank you so much everyone for your responses. Great ideas. I agree talking about goals is good. Pill swallowing - yes. I will stick with the meds. Thank you all. Patience is hard for me but I will try. Does anyone have any stories about changes, for the better, after the onset of puberty?
  23. Hi - my 12-year old daughter has PANS, I believe. Seeing PANS/PANDAS neurologist in northern NJ. Very elevated titers for myco (1400) and slightly for strep. Treating with Amoxicillin AND Zithromax. Has tics which may have actually increased since being on antibiotics (only about 9 days though). She will not take pills, tried Biaxin liquid but will not tolerate so switched to Zithro. Also has increased anxiety and has had one rage since on meds. Used to take Omega3 (Nordic Naturals with DHA for kids) , then stopped, and recently started again. Taking probiotic too. Her diet is GF and mo
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