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Cristo-Krista

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  1. Like
    Cristo-Krista reacted to Chemar in Tics After Neck Injury & Antibiotics   
    Have you done any probiotic treatment? Or tested for Candida albicans "yeast" overgrowth in the gut?
    I am not suggesting it will fully resolve your son's tics, but when we take antibiotics, they kill off all the "good" bacteria too and that can often create a favorable environment for Candida, which does cause tics in some people.
    Also, have you had your child evaluated by a NUCCA or Atlas Orthogonal chiro since the neck injury. They specialize in neck injuries and I do know of tics that have resolved after readjustment. Please note these are not regular chiros but highly specialized for cervical vertabrae readjustment of the neck.
  2. Like
    Cristo-Krista reacted to Chemar in My son doesn’t fit into any tic disorder categories - help!   
    Hi
    I think perhaps you are referring to B12 not B6? For B12 the methyl form is better than the cyano form
  3. Like
    Cristo-Krista reacted to Chemar in My son doesn’t fit into any tic disorder categories - help!   
    Yes, chlorine was a major tic trigger for my son! Even though it didn't show in his list of actual allergies, more detailed testing showed he  was very very sensitive to it, as to many other chemicals. Later testing confirmed he has MCS (Multiple Chemical Sensitivity) which is why both environmental and food additive chemicals impact him so intensely, including  chemical perfumed/fragranced items etc
    I found some excellent online resources over the years to make my own household products, and always select fragrance free/dye free options for laundry, toiletries etc and of course no artificial food dyes or other  artificial food additives.
     
  4. Like
    Cristo-Krista reacted to Chemar in Detox besides epsom salt bath?   
    Chinese cupping is also used for detox, and there are other detox herbal & juice remedies and treatments available.
    Drinking warm fresh lemon juice water is one of the simplest (hot water with juice of a small lemon or 1/2 large one) Add a spoon or 2 of honey if needed, but plain is best imo
     
     
     
  5. Like
    Cristo-Krista reacted to MAMA3 in Tics and use of essential oils?   
    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.
  6. Sad
    Cristo-Krista got a reaction from Sunflower78 in Tics After Neck Injury & Antibiotics   
    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.  
  7. Like
    Cristo-Krista reacted to bobh in Dr. K Interview, IVIG & Question   
    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 find all kinds of experience).
    I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance.  One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol).  Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day.  I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm .  We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone).  With supplements, I would be very careful - some make some kids worse.  Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids.

    So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.
  8. Like
    Cristo-Krista reacted to bobh in Beginning our PANDAS journey. Advice please   
    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.
  9. Like
    Cristo-Krista reacted to MAMA3 in Tics and use of essential oils?   
    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 friends) & explain to them he can’t control it & how hard it was on him for everyone to constantly ask what was wrong with him. They stopped asking & they actually started watching out for him if someone was ugly too. The oils helped so much with his emotions & also helped him relax more at night. I recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax their brain/mind, again without making them tired. I also wanted to mention that we also tried the magnesium supplements, but stopped after his bloodwork showed he was not deficient on any vitamins/minerals. I know what you’re feeling & you’re not alone. I now tell our story on Facebook & have had people reach out to me also. I once felt like I shouldn’t talk about it & that no one would understand, but it helps so much to reach out like you have. We need to educate each other & share our stories & show others that there are more natural approaches. As my husband mentioned earlier, I also recommend you meet with a neurologist just to get clarification. We had bloodwork to make sure he was not missing key vitamins & minerals. The Guanfacine tablet does make a difference. Our son is proof that it is possible to have tics & still have a happy, normal life. I am here if you need anything, or have any questions. 
  10. Like
    Cristo-Krista reacted to cmontgom in Tics and use of essential oils?   
    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 do his part and stay away from foods he is not supposed to eat at school or at birthday parties. We tell him it’s not fair and we understand. But it is what it is. Sometimes he does eat these foods but eventually he knows the consequences and for a 9 year old he’s had to make very mature decisions on his own to say no which he mostly does now. We are very proud of him. What we have found since this started a little over a year ago is that his tics are inside him. We don’t know if they will ever fully go away or if he will outgrow them. Sometimes it stays dormant. Time will tell. What we do know for certain is that you have to look for the triggers that cause the tics to flare up. For us we know certain foods and ingredients are big triggers. So limiting or eliminating these foods, with the help of certain essential oils and his small dose of guanfacine medicine it really keeps his tics very low to unnoticeable. Like my wife said feel free to reach out to us any time and check back. We respond as quickly as we can each time. I hope this helps. Hang in there!
  11. Like
    Cristo-Krista reacted to MAMA3 in Tics and use of essential oils?   
    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 fructose corn syrup & it doesn’t seem to bother our son. I buy Healthy Life whole wheat bread at Walmart & also Sara Lee brand has some bread that is labeled no high fructose corn syrup. If we buy sandwich meat, turkey or ham, I buy Oscar Mayer Natural. It will show no artificial ingredients & no nitrates, which are additives to preserve longer. Our son likes peanut butter & Jelly so he eats that at school & we send lightly salted Pringles & organic granola bars. We also send organic annie’s Chocolate chip cookies a few days a week. I have also found that Kraft Mac & cheese does not affect him since they’ve removed the preservatives, etc. The Kraft Mac n cheese bowls are easy too.  We mainly stick to all fresh fruits & vegetables & we cook at home primarily so we know what is in his food. I know it’s overwhelming, but over time it won’t be. Mainly stick to fresh fruits & veggies. Also we use Young Living oils because they are more pure. You should be able to find a local contact who may sell them in your area. 
    I hope this helps & we are always here!
    Hugs
  12. Like
    Cristo-Krista reacted to evol in Ugh, another one of my kids has started to tic   
    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 was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.
  13. Like
    Cristo-Krista reacted to evemac in 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 is important to our children with TS.  Unfortunately, people still don't really understand it but the best news is is my son has gone through this and is a strong academic and athlete and what's even more important than that is that he likes who he is!

    Keep up the good fight.  I remember crying at night with him when he was ticcing so hard he couldn't sleep.  I have been there! You are not alone!
    Eve
  14. Like
    Cristo-Krista reacted to Chemar in My son doesn’t fit into any tic disorder categories - help!   
    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!
     
  15. Like
    Cristo-Krista reacted to enessimsek in I've found 2 ways to reduce tics   
    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 visible side). It's like guied the tics over my legs. I feel like the energy want to comes out so i let the legs do the job until feel relaxed. When I tighten my legs 2 or 3 second the pressure was gone and in public that would be less visible.
    Second tip;
    I've directed myself to do all tics "only" at home. I've worked on this about months. I've hold my tics in public or school. If I can't hold the tics anymore. I go to toilet or some place that I can be alone I release my tics and when i feel relaxed i move on. So when I get home I don't do over thinking about tics , I do tics so hard I've never stop any pressure, I do all tics and realesed myself.
     
    I am 24 , it took almost 18 years I've reduced %60 percent of my tics. Last of all being overweight and drinking too much coffee increase my tics so i walk 20 minutes everyday and drink coffee once a week.
  16. Like
    Cristo-Krista reacted to Lwei66 in Daughter has developed some tics   
    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. 
    He just started having a cold few days ago, we gave him cold medicine. It does not seem to cause flare up n his tic. 
    Hope this gives you some reassurance.
     
  17. Like
    Cristo-Krista reacted to Lwei66 in 7 year old tics   
    Hi Hope36
    How is your daughter now?
    I am new here because my 8 yr-old son developed Tics about 1 1/2 months ago. On the worst days, he was ticcing every second. As a dad, I worry so much with tons of anxiety myself.
    I gave my son Fish Oil and some Cod Liver Oil. We also give my son herbal medicine. So far, the situation has improved some what.  Tics frequency improved from every second to 2 or 3 tics a minute. Sometimes we see 10 minute tic free intervals.
    Following Dr. DeMare's book on Natural treatment for TS and tics, I am now doing detective work to figure out the triggers for my son's tics. I do believe that my son's tics was epigenetic and brought onset by environmental/dietary triggers. It will take time to slowly identify the triggers and then hope that there is ways to address each of the triggers.
    Hope that your daughter's situation has improved.
     
  18. Like
    Cristo-Krista reacted to Lwei66 in Teen:incapacitating tics and issues   
    Hi bobh,
    Thanks for the reply.
    After reading Shiela's book on Natural treatment for TS, I started to dig into the blood test that the hospital did for my son. I found out that the strep Titer level was only at 200, which means negative for strep infection for my son. So thinking back, it was possible that the abx (penicillin) might have aggregated the tics.
    Anyway, since my last post, my DS' tics has improved great deal, from every second to not noticeable. In fact, my DS is telling us that he rarely has tics on a daily basis.
    What we have done is to give Fish Oil, multi-vitamin supplement to my son in addition to Chinese Herbal medicine drinks. We also give some probiotics to my son.
    Very fortunate to have found this site. People are very kind and always want to help and share information.
     
  19. Like
    Cristo-Krista reacted to mommyfor4 in positive update on ds   
    Hi Everyone, it's been some time since I've posted. Things continue to go really well. We have even been able to get ds to do acupuncture (my child with huge needle anxiety!!!!) So far it seems to be really positive for him, he feels more focused and even looks more relaxed. He even enjoys going now and will ask when his next appt. is. We had a rise over the last full moon, seems to be par for the course for him, but nothing to send us into the old panic. We are continuing with the Progressive Multi and Natural Calm and of course his diet, we are using freshly ground flax in the mornings...when I remember for Omega's. His food sensitivities seem to be less reactive and shorter lived, although we are not prepared to change his diet. He is not totally tic free, but he is no longer so anxious, and many days we almost have to look for his tics. He still has definate periods of waxing but they seem to be mostly around the full moon and if not we already knew they were coming due to a food exposure etc. All I can say: there is hope, this is not the same child as when I first began this journey and he's 10, according to research shouldn't he be on the rise as prepubescence creeps in? I am so grateful to everyone who ever gave advice or just an "I know what your feeling". Thank you all.
     
    Megan
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