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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 things today out of desperation to help the eye rolling - Magnesium and Zyrtec. MUCH improved! Now of course I committed the cardinal sin of trying two things at once, so not sure which one helped. I will figure it out. Please still send advice - the more info the better. Thank you!!!!
  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 100% yesterday. Also started her on 1 tsp Calm magnesium. She had not tolerated this well before but trying again. Also has seasonal allergies that affect her eyes - the tic kicked in right when the pollen started. I saw lots of posts about dairy and magnesium helping - can anyone please tell me their long-term results with the eye rolling tic? How long after eliminating dairy did you see results? Did it come back? Please, any thoughts would be so helpful to me! Thank you!
  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 probiotic - I use Therbiotic and Kefir 500 mg daily of Taurine - my DD did not tolerate Magnesium well. Prozac - 2.5 ml daily under guidance of psychiatrist for anxiety - but I am going to try to wean her off Essential oils: Young Living PANDAS protocol - check this website: http://westoppedpoppingpills.com/pandas-protocol/. If you need more info message me. I think this was KEY. Epsom salt baths - 1 or 2 times per week. The biggest change came with the Taurine - she had a tic where she would scream LOUDLY every 3-4 seconds. The day after I started her on Taurine I have not seen that tic since - maybe a squeal here and there. That was about 3 weeks ago. Keeping my fingers crossed and praying that my DD continues to improve. I hope you find this helpful. I got all of my information from this website, so keep poking around to see what rings a bell for your son's situation. Best of luck and prayers to you.
  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 week she can't go back in the pm (like today). Tics are too bad. If you find anything about homeschooling please post! We are in NJ.
  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/or digestive enzyme that they recommend that is either a liquid or some other form? Also I have not explored taking something to combat candida/yeast which she does have. Any recommendations? I have been adding one thing at a time because her anxiety increases with each additional "thing" she must take. Thank you ALL - this forum has been a lifesaver.
  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. But some days are worse than others. Question - does anyone recommend a good probiotic that comes in liquid form??? Or really good tasting chewable?
  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 her out of the regular school setting. What do you all do? Does anyone home school? Special/private school? Would really love to know your experiences and what works/doesn't. Thank you!
  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 improvement. Here's my questions - Do you think my plan is a good one for her weight and age? Can I give her more in a day? Have seen that it's OK to give more per day until you see that the stools are getting too loose. I am totally willing to try that but not sure if it is safe. Does anyone else have experience with Elderberry? Wondering if this is helping. Started both Kids Calm and Elderberry at same time. We have autoimmune issues so I thought it would help. Any thoughts on the Taurine? Does not seem to be included in KC or NC, yet I read it is important to properly absorb the Magnesium. Also had her on Nordic Naturals Omega 3 but stopped because Omega 3 is in the Kids Calm. Seeing a nutritionist this week, but wanted to get perspective from this forum too. Any advice would be greatly appreciated! Thank you all and thank you for this excellent, life-saving forum.
  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 worse in last 2 months). Working on lowering sugar intake and no GMO's. She does have MTFHR and is taking a probiotic, but nothing else for gut yet - she is resistant to taking meds/supps so I am waiting to introduce more supplements. Also taking elderberry for autoimmune issues as I read that is good. Also - my DD feels so alone. She is 12 and we live in NJ. Does anyone know of any support groups, or is anyone willing to start one? Thank you all - this forum is a lifesaver.
  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 mostly dairy free but she is a picky eater and so has a lot of carbs. Trying to get her off sugar and carbs but taking the meds is easier when she has something sweet (nutella is her favorite chaser, also soy choc milk mixed with plain almond milk). Questions: Does anyone have any ideas/thoughts on antibiotics she is taking? Seen an increase in tics/anxiety/rages on these drugs? Read some kids have increased tics with Omega3 - maybe stop that? Any luck with steroids? Does anyone report ANY relief from just doing nothing - no meds, no discussion, just ignoring tics? All my daughter's anxieties and tics got 10x worse once I actually started looking into it and treating it. Started therapy. But scared to not treat myco and strep after reading Saving Sammy and online info. Any advice would be so helpful. Thank you. Bless you all for this forum and for your information.
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