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Mommymom

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    Mommymom got a reaction from Swetha in So worried, daughter has tics   
    @madimi I have been reading your comments over the last couple of days and I can totally relate to your feelings. I am sharing my story and hoping it will give you some comfort. 
    During 2020 pandemic, my daughter was around 8 years, she had a really tough teacher. She struggled a lot with online classes and having a strict teacher wasn't helping. One day my daughter had a bad day since her teacher confronted her in front of the entire class for not submitting homework. Few days later, I noticed that she started making a 'hhmm' noise every few seconds. I felt something was wrong and immediately emailed the pediatrician who said they are tics and will go away. I started the 'hhmmm' turned into new tics every few weeks, we saw hand pulling backwards, cough, throat  clearing, heavy breath out, leg lifting, waist stretch to the sides or back, eye blinking, head nodding, neck tightening, standing on toes, eyebrow frowning, shoulder shrugging, touch chin to neck, shifting upper body to one side etc. 
    I took her to two different neurologists and both of them confirmed that they are tics and they will go away. Since she was having tough time with her teacher, her anxiety levels were really high and we went to pediatric psychologist to received progressive muscle relaxation techniques. With advise from @mert, I started tracking tics, frequency and intensity on a spreadsheet. It gave me a lot of relief as I saw a pattern, approximately every 6 weeks i saw tics going away replaced by new ones. The trend continued for almost a year. After almost 9 moths of tics, my daughter started getting CBIT therapy for tics. It helped her a lot to be able to suppress some problematic tics in social situations. December, 2021, by the time we reached one year mark, tics were almost gone, one or two remaining with very less frequency and intensity. I was so happy and started sleeping peacefully after many sleepless months. 
    For 2022 new year celebrations, we decided that the whole family have been thru a lot and need a vacation. We went to Mexico for a 7 days trip and few days into the trip, I noticed that she started with some neck and mouth tics. I was heartbroken and was full of guilt for going on a trip. Currently, 3 moths after vacation she still have tics that started during vacation and are slowly lessening frequency. 
    I am sharing my story to tell you that it is not easy and needs lots of patience. I struggled a lot and went into depression and lost interest in life. I realized that my daughter needed me the most and need to stay strong. ITs not easy, I used to pretend normal in front of her and used to cry my heart out at nights. Here is a list of things that helped me and my daughter: 
    Things that helped Me: 
    Read studies on tics and believe that some of these children will outgrow them Take help, talk to your doctor and get therapy to manage your anxiety Keep life simple, don't overwork and burn out yourself. We ate PBJ sandwiches many times since I had no energy to make something good and its ok.  Take a nice walk in the sun, hike, bike etc whenever weather permits. I kept the social gatherings to as minimal as possible as meeting people worsened my anxiety as they gave my daughter looks.  Have someone who will listen to you, for me it was @mert . He listened to my concerns and patiently replied whenever i wrote to him. It helped me tremendously.  Think of your child, how hard it must be for them to deal with tics, try to make them feel as special as you can, hugs, kisses, play time with them, appreciation, new toys etc.   Things that helped my daughter: 
    Limit screen time to as low as possible including laptop, TV, phone and tablet Make up silly games to play with them to deviate and take away stress, I used to play badminton with a balloon, skipping, charades etc. Lower gluten, sugar, processed and deep fried foods and artificial colors to as little as possible. It is believed that inflammation in the body and gut health is directly connected to brain functioning.  Started music classes to keep her occupied   Hope my post was helpful. Trust me its not easy. No matter what, it is just a medical condition and there are many worse conditions that this, so we should be glad. Give your kid all the love and care you can, I am sure he will outgrow of the tics and this may not even be a problem few years from now. 
  2. Like
    Mommymom reacted to silver77 in So worried, daughter has tics   
    Hi @madimi - there must be something in the air!  After a good chunk of time with mild tics, not gone, but really not noticeable, my daughter over the last 2 weeks has seen a big increase in tics and new ones.  She has been doing an eye wink/lip stretch for a while but would happen maybe 1-3 times an hour, now it's literally every 2-5 seconds.  She's also started to scrunch up her stomach/slight hunching over, incessant scratching all over her body, throat clear/grunt type sound every 5 seconds.  I've had two meltdowns privately over this.  Frankly every time I see her do this (which is often), it feels like a knife is stabbing my heart.  I do hide all my emotions from her, and it still continues not to bother her.  In fact, today she went to the park to play, ran into 5 other classmates and they all ended up in our backyard playing and it made me so happy to see.  I hold onto the good, and have started my own gratitude journal to write down 1-3 things I'm grateful for every day to get me through this.  I've actually started her doing it as well, every night before bed she writes down 1 thing she's grateful for. 
    In addition to all of this, my older daughter (12) who has had vocal tics on and off for years (no motor), developed an eye roll in January.  It went away after 3 weeks and two days ago, started up again.  She told me today, friends are starting to ask at school what is wrong with her eyes.  We've had discussions about her vocal tics, as she also has a very frequent throat clearing tic, so she knows what tics are, but I'm certain she doesn't talk about it with her friends.  She has ADHD and I'm also starting to see OCD tendencies in her.  
    Like I said, my heart hurts, I keep trying to see the good, remind myself this increase in activity will hopefully pass soon and continue to be present for my kids.  But it's so challenging.  I worry about their future and their happiness.  
    You are not alone in this!
  3. Like
    Mommymom got a reaction from madimi in So worried, daughter has tics   
    @madimi, glad you found my response useful. Regarding your question ' how to handle tics at school with other students', I recommend to be open with the teacher and educate her on what tics are and explain that your son is not doing them on purpose and they are uncontrollable. Honestly, kids are least bothered and I am sure your son's classmates will also not be pay much attention to the tics. You can request the teacher to give your son small breaks during class for him to either read a book or sip some water for dry throat caused by constant coughing. 
    I felt like the cough/throat clearing was triggered by certain things. For example, my daughter used to do throat clearing more frequently while eating. Throat clearing tic was present longer than other tics and stayed for almost 3 months. CBIT is recommended kids who are of atleast 8 years or older as practicing CBIT techniques require a lot of patience and commitment which younger kids may not be able to do. But I recommend CBIT highly since they don't teach kids to suppress their tics but instead train them to do an alternate/competing action instead. For example, my daughter had a tic where she would lift her chin to the ceiling. During CBIT the therapist asked her to pull chin down whenever she had the urge and after practicing if for few days, the tic itself was gone. 
    Regarding Screen time, it was definitely hard but the best thing we ever did. Because of my daughter we took away screen time from my elder son too. We had to educate him that we are doing this to support his sister and we gradually lowered his screen time. We instead did lot of family hikes, board games and just talk to each other, tell jokes etc. which made kids wanting less and less of video games. Lessening screen time along with healthy eating and exercise is what helped the most. 
  4. Like
    Mommymom reacted to madimi in So worried, daughter has tics   
    Once again thank you very much for all the helpful tips, and i wish you and your daughter all the best and hopefully better days with less worry will come for us all!
  5. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    Get any help you can. I understand you fully and we've been in the exact situation multiple times. 
    I can not talk for your child but I know my daughter can catch me easily if I watch her tics and this makes her nervous and also negatively effects the tic frequency. I still get caught time to time, but I thought myself to make her comfortable during the peaks as it's the not the easiest but shortest way out for both of us.
    I think stress certainly has an effect. Under negative stress I see the tics rise quickly. I try to apply positive stress as much as possible, like a physical competition , memory games, any thing that would direct her concentration to somewhere else. 
    Believe it or not, every 30 sec is not really a high frequency. I had so much worse on some tics. 
    Just today, she started blinking both eyes same time (not like blinking but like closing and opening) , we had this tic couple of times before. Sometimes today it got really frequent. A few minutes after I told her, it might be better not to use iPad as her eyes look tired, she came and told me, I don't want to do it (close eyes) but I also want to ... trying to explain herself. I said, it's quite ok and to do whichever she feels better, closing or not closing and added it will go away in a few days maximum anyway (that's some good will) 
    Back to my first sentence, get any help you can, if you are not well, you can not help. 
  6. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    Greeting from Dubai, I know how difficult it's, at least at the beginning. Tic disorders are a very wide spectrum and every child is wildly different though there are similar patterns shared among them. One thing that is very clear to me is, basic tic disorder is significantly common, I've seen it at several of my friends/relatives kids and if you think how uncommon it's among adults, you can understand that many of the kids will get to a point it's not easy to detect. 
    There are several kinds of tics, but I think vocal/motor tics is a very bad way to categorize them, also meaningless. As many believe, I think Tourette Syndrome naming is not very meaningful. Coughing is an physical activity and unless your kids is doing it for the sound of it (very unlikely) it's more or less a motor tic. Our daughter also made some short noises like 'hih' when she had abdomen related tics. I did not consider them as vocal tics.
    As I pointed out in earlier posts I found that my kid had less tics when she felt more confident and I focused adding her skills that would make here feel confident of herself when under pressure. It's impossible to know exactly if that helped or not, but I don't think it caused any harm. 
    Don't worry tics will wax and wane, peak points will start getting lower and lower after one year usually and every following year it seems to get better in our case. Do we have tics, yes, but to a point that I usually not notice them. But we still have some peak periods after four years and I repeat my self to hold on 1-2 weeks... 
     
  7. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    We still have some tics here and there, but they are getting increasingly difficult to detect even by me. There still moments where tics do increase , but it's relatively a lot easier peak and relative to the first two years peaks duration is significantly shorter. 
  8. Like
    Mommymom reacted to FraggleRed in please help my child with severe tics   
    We started a gluten free, dairy free, soy free, egg free, sugar free, no artificial flavours /colours diet on February 20 of this year. At this point my dd had been ticcing for 3 to 4 weeks. We had a couple of her worst days AFTER her diet changes. It was disheartening to say the least But we persevered and her tics are now 99% gone. We’ve since reintroduced eggs and I’ll be trying soy next. She will always be gluten free however. I should also add nightmares and stomach pains and joint pains are also gone. Don’t give up!
  9. Like
    Mommymom reacted to lmcgill in 8 year old boy with transient tics   
    He is great now, besides going gluten free and watching his diet, he is tic free. Please pray and believe it will pass by. 
  10. Like
    Mommymom reacted to lmcgill in Chances of outgrowing motor tic, for 9 y.o.   
    Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem.
    This has been a long journey for (mostly me) us. Since this started, we have now have him gluten free, clean foods, Kids Calm and Bonnies TS Control vitamins. This program seems to work and he is about %95 tic free. Even when he does get a tic, it is only one and they typically last for a week to 10 days then stop. They will start back if he has anything with wheat or food with either artificial stuff and or chocolate.
    I have found Natural Remedies Tic Tamer to really settle the tics down a lot when he does get them. I believe he is growing out of the tics, he seems to have the less often and less severe the his original ones. I absolutely hate these tics, and even today with his eye furrowing, made me feel very depressed and mad. I have come to realize this is my problem. He gets upset if he sees me upset about his tics, but I don't think they bother him that much. He would rather play his games and eat candy (sometimes) and knows they will give him tics. I want him to be a kid, so I don't want him to have bad memories of these precious years. I am so glad he is getting a little older so he knows what will give him tics now.
    A little background:
    No family history of tics or TS
    He is very bright, no other commorbid issues.
    Never had any vocal tics yet
    They bug me way more then him
    His tics have made me love him more then I ever thought I was capable of, and I pray that one day he is over them. Until then, I have learned to take one day at a time. I use to have those butterflies in my stomach just waiting for him to get off the school bus hoping they would be hardly noticeable. I travel a lot and still ask my wife every night "how are his tics?"
    Not sure why I decided to write this, just felt compelled and hoped I could offer some help. I feel like I went through the darkest days of my life since my father passed away 11 years ago and will leave you with this: He will get better and so will you.
    Lenny
  11. Like
    Mommymom reacted to Nan in These Treatments Helped us!   
    My daughter's tics (at that time I didn't know they were tics) started soon after she turned 5. It started as a throat clearing tic which we thought was due to seasonal allergies and kept treating her for it. The tics did not improve at all and we were really confused as to why none of the allergy meds are helping her.
     
    A year went by with her throat clearing tics still present. A few months ago, her throat clearing tics stopped completely and were replaced by eye blinking tics. That is when I stumbled upon this website and realized that what she has been having all along were tics.
     
    Then we tried magnesium for a while with minimal improvements. I discontinued magnesium when I didn't see any value in giving it to her.
     
    We did allergy testing and found she was allergic to quite a few common food allergens, egg being the main one. After we eliminated the food allergens from her diet, she is now completely tic free and has been like this for a couple of months .
     
    I will continue to monitor her and update the boards if anything changes.
     
    Hope everyone here finds the path to recovery from tics soon.
     
    -Nan
  12. Like
    Mommymom reacted to patty in These Treatments Helped us!   
    Shortly after my son turned 6, he had a sudden & acute head tic, then later with other motor & vocal tics.
     
    We have done the following treatments: acunpuncture, chiropractic, CST, Chinese medicine, ND with supplements, NAET & Bioset.
     
    My son's tics did calm down after about 2 acunpuncture sessions, but the needles caused him much stress & anxiety, so we abandon this treatment plan.
     
    My son had modest improvement with chiropractic.
     
    NAET has eliminated his asthma and chronic bloody nose. It also helped some with his environmental allergies.
     
    CST has been very helpful with his neck pain that triggers his neck tic. It is almost completely gone.
     
    Unda #s from my son's ND seems to be helpful as well.
     
    Kids Calm & epsom bath is very helpful for stablizing the tics.
     
    I have switched from NAET to Bioset recently. I believe this will eliminate my son's allergies and tics. I will report more on this after more treatments.
     
    Finding a qualified practitioner made a world of difference in my son's well being & tics. We have gone thru 2 CST therapists and the 3rd one who is also my son's ND gave very positive result. Also, we have gone thru 2 NDs. My son's first ND caused more damage than good. However, our current ND made progress with my son.
     
    My son is 98% tic free and when he is waxing, it is mild & infrequent and gone within days or sometimes just hours. Even when he is waxing, he is about 90% better than before. For parents out there who are new to this, i would say things do get better and become manageable. I have great hope that many of you will find your way and my son will be completely tic-free.
     
    Pat
  13. Like
    Mommymom reacted to Emmars26 in Sudden Onset of Severe Complex Motor/Vocal Tics   
    One week into some mold TX and very beginning of DNRS utilization.  Daughter with tics is improving.  So soon to really tell, but we are treating 5 of us for mold symptoms (e.g.  I had extremely itchy eyes and headaches, fatigue).  All are seeing improvements in moods and fatigue levels, except for husband-but he got his 2nd covid vaccine so not feeling great was expected.  
  14. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    Hi, 
    We are doing ok, we still have 3-4 tics with wax and wane. In the long run we think we are in a descending trend. 
    Please do not consider me an authority. I am just an other worried parent. 
    Unfortunately there are way too many unknowns about tic (and related) disorders. There are very few researches that focus on underlaying reason for tics and why some get better and others don't. Luckily there are now, some researches on the topic like EMTICS and some other I pointed out in other posts.  
    I try to stick with evidence based treatment strategies but this does not mean that others methods can not work. Tics wax and wayne and expected trend from onset is downwards. This makes 'isolating' the effects of supplemental vitamins/diatery changes and other things very hard. 
    We try to follow a healthy diet with no MC Donals or smilar stuff. We tried 'gluten free' diet for a while and also a 'milk' free one. It was quite hard for us. At the end we gave up but still limit 'milk' as our doctor told us that he does not think these have any relations with tics but reducing milk is considered healthy anyway and won't make harm. 
    I am not knowledgable on mercury poisoning enough to comment on it. Mold is unhealthy and so there is no harm getting rid of it. I use dehumidifiers time to time to prevent mold as I am practically living on an island. 
    For the naturopathic DR, I only believe in evidence based medicine/treatment , if the DR can point to some research results about why he is making the tests etc, I'd check , otherwise skip. But that's me. 
    I know how 2 months feels like multiple years under stress, been there. I remember that I lost 20 lbs in the first 3 months very rapidly. However when it comes to tics, it's a very short period. 
    Can some movements be other things then tics? Yes, they can be. Some hyperkinetic movements can easily be misdiagnosed as tics. (or there is a type of seizure which often looks like a tic.) Here is a paper on the topic you may find interesting. 
    https://pubmed.ncbi.nlm.nih.gov/9613740/
    Also compulsions, impulse behaviors etc can be misdiagnosed as tics too (does not like your case though) , you can read an old paper on the topic here, a google search may find newer ones. 
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656307/
    I believe in the thesis that Tics, OCD, Hyperactivity etc.. are different manifestations of the same underlaying condition. 
    I also read that tics being elastic is considered a good thing, on the other hand I think it's actually the norm. Tics keep changing, usually in 6-12 week periods. But some stick longer, some stick shorter some come and go changing a bit every time. 
    While not useful much, I also observed that sensory physical stimulation does trigger tics. As an example, using googles at the pool, after some period of time would start triggering 'eye' related tics. Teeth development (new teeth coming etc..) can trigger tics around jaw. 
    I believe relieving anxiety and supporting self esteem should be the focus. I support her to gain new skills as much as possible to up her self esteem. We had the same issue with gymnastics and continued online. Not 100% effective but 80% was ok. She got quite strong so she does not feel under stress when physically challenged. 
    Btw you are as important as your kid and you also need to find ways to keep your anxiety levels low and manageable. It will build up and it can result in behavior that will result in increased anxiety in the child. (been there , done that) 
    Keep on updating us 
    PS: Intensity of the movement (speed, extension, strength behind) etc is also a good measure like frequency and can give you insight on the trend. I think we've seen noticeable decline after 4-5 months or a bit more. 
    best regards
    Mertol 
     
  15. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    Here comes an other update. 
    I started following tics on an excellent sheet that helps me figure out progress of tics and when they emerge and when they get out of the picture. 
    At the very first 2 months after 'new' noticeable tics kicked in we had some ups and downs however they never got very bad or to a point that would effect her social life. At the 8th week a steady decline started and leg/arm jerking slowly decreased in intensity and frequency and now gone. However during the course a few more tics came and go. We had some head nodding that was very infrequent for 5 weeks , we had a jaw opening tics that was also very infrequent for 8 weeks , a hip related tic that was frequent when walking but went away in a few weeks. 
    Interestingly some long standing tics are gone now too , like broadening nostrils and nose twitching (not sure this was tics or related to allergic rhinitis) are either gone or very very infrequent that I do not notice. 
    On the other hand an abdomen tic (that is pretty easy to mistaken for a breathing tic ) is back. It's not frequent and very hard to recognize externally so that does not worry me as much. 
    EMTICS have published several papers , so if you've not read them those can be good resources. 
    We are not using any supplements other then the very usual stuff. We are still focused on 'positive stress' , less TV/Phone'Tablet time , more physical activity. I think that being confident really helps her a lot and at her age part of the confidence comes from her physical capabilities, so I feel like gymnastics really help her a lot. 
     
  16. Like
    Mommymom reacted to usernamecat in 7yr old daughter with complex motor tics :(   
    Hi there. I apologize the the extended amount of time it took me to reply and post again. I was in a sort of denial and was trying to avoid dealing with the emotions that came with my daughter’s tics. Here is a run down of our story and what we’ve tried.
    Chiropractor: helped with her posture and overall wellness but did nothing for her tics Grapefruit seed extract: 1 drop in water once a day when I noticed her tics were extreme. It appeared to have helped but I’m not 100% sure if it’s the grapefruit or the foods we have eliminated. Neurologist: recommended she be put on a medication patch. We did not feel comfortable putting her on meds since the tics themselves do not hurt her physically, emotionally, or socially. Sheila’s book, which was very encouraging and full of helpful information. Got her a Fitbit sleep tracker to monitor her sleep and see if it correlated with increased tics when she got less sleep. Kept a Food Diary Food Elimination: this one I feel was the biggest one. We as a family already are gluten free, egg free, cashew free due to my little one’s food allergies. Other foods we eliminated are: Dairy Corn Tomatoes (nightshade) Garlic Cinnamon: we saw a huge spike in tics after thanksgiving when she had pumpkin pie which had cinnamon in it.  For a few weeks she was doing well, only a few mild arms tics throughout the day but post thanksgiving it spiked back up. 
    I feel like her main triggers are Cinnamon, Corn, and possibly Garlic and Tomatoes! I’m unsure about dairy but we’re going to wait until she gets to baseline before reintroducing it.
    Currently she’s still ticking moderately possibly because she had some pumpkin pie last week (cinnamon trigger).
     
    Plan: 
    Reintroduce grapefruit seed extract 1 drop once a day. Continue sleep tracking and food diary No dairy, no corn, no tomatoes, no cinnamon, no gluten in her foods.  The bright side: These tics bother me as a mom more than they seem to bother her, the child. So over all I’m very grateful she’s still a happy and healthy kid. Also virtual school from home has helped with the social and emotional aspect. 
    Our hope: We find her trigger and avoid it so she can be tic free or as close to tic free as possible OR she just grows out of it. 
    It was really hard at the beginning and I can’t say that it gets better but it does get a bit easier with time. 
     
  17. Like
    Mommymom reacted to mert in So worried, daughter has tics   
    I personally think that hyper activity is an other form of a ‘tic’ , an urge to do something, so might be considered part of the spectrum. That’s my personal opinion yet prof I chatted on the topic agreed the view. 
     
    We had the same issue of tics before sleeping for a long while, almost a year. 
     
    Make sure you got all the help you can to cope with the situation. 
     
    i am positive that you will be in a lot better situation in short time. 
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