Mommymom

@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.

@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.

Hi @NurseMom21 How are you? I was looking into CBIT therapy and recalled that you are waiting for the same therapy for your daughter. Did your daughter start CBIT? Can you please share your experience?

Hi @BarbsUK, How are you? How is your daughter doing now? I really hope she is doing better with her tics and emotionally. Did you get PANS/Pandas tests done? If so, we’re they helpful?

@NurseMom21stay strong, your daughter needs you more than ever. I pray to god that you get the help and support to help your daughter get better. Please keep us posted on PANS/PANDAS result.

Thank you for the detailed response @mert. It is so good to have someone who is going thru similar issue weigh in on various topics. I appreciate your insights and your opinion on prognosis being mostly on descending trend in the long run. I really hope that's the case for my daughter. I understand you are no Dr but sometimes parents are much more knowledgeable than Doctors. It is indeed very frustrating to see how little research is being done in this area. The nature of the issue, frequency and the age group demands more and more research, intervention and prevention from medical community. I also believe in science and evidence based treatment. I will continue to work with the pediatric neurologist to seek answers for my questions. Thank you for your caring advise to take care of myself to be able to support my daughter. I did broke down many times in the last few weeks. It was not helping the situation and was I was making an adverse impact. I immediately reached out for help, I am awaiting stress/anxiety management session to be scheduled for myself. I think parents going thru this shouldn't hesitate to seek help for themselves, then only we can better support the kids. I want to share that I started using homemade coconut milk as an alternative to milk in smoothies. You may want to try since coconut is supposed to be really good for memory and brain functioning. As you suggested, I will continue to do what I can to support my daughter keep building her self-esteem, create less stressful env and help her develop new skills. I hope parents reading this comment will do so as well. Thank you again.

Hi @mert Hope you are doing well. How is your daughter doing? Here comes an update and few follow-up questions. I see that my daughter's throat clearing and breath out from mouth tics are mostly gone. She still does heavy breathout from nose followed by 'hhmmm' and hands pulling towards her. Frequency remained the same, its just that the tics are different. I am still waiting for Dr to order food allergies, PANS/PANDAS and vitamin deficiency tests. Socially my daughter is doing ok but I can sense that she is under tremendous stress knowing people are observing her. Few things I did from last time: Started Gymnastics class for her, I am afraid I will need to take her off soon due to COVID lockdown in California. Less gluten, less sugar, less diary and eggs. Less screen time, this is hard due to online schooling and online homework. At least 9 hours of sleep. Started following tics on an excel sheet as you suggested. Pediatric psychologist did one session so far her anxiety and taught deep breathing and progressive muscle relaxation exercises. These questions remain: Read somewhere that high mercury levels may be the cause, we eat fish and eggs often. Do you think I should get my daughter tested for Mercury levels? Does diet really play a role? I know its not easy to answer, I am asking since restricting her favorite foods are causing more stress and anxiety. Read about mold and its relation to onset of tics, I did a mold test in my daughter's room and found small traces. Could that be the culprit? Found a naturopathic Dr who is going to charge a lot of money and run some tests while Neurologist is asking us to wait and watch. I am afraid of drawing too much attention to tics in the process of these tests. Should I wait and see if tics get resolved (its been almost 2 months since tics started) or do you think going to Naturopathy is a good idea? Can hand jerking/pulling towards chest be not tics but a different movement disorder? I have been re-reading your comments on this thread again and again looking for clues, mapping the timelines, what to expect etc. Thank you for the knowledge you are sharing in this process.

Hi @NurseMom21, I am sorry to hear about your daughter. It is unfortunate how tics take over life all of a sudden. I am in the same boat with my 8 year old daughter. Vocal and motor tics started all of a sudden. I am still clueless looking for possible interventions. My daughter’s pediatric neurologist asked us to wait and watch. They claim the tics to wax and wane overtime. Looks like puberty plays a key role. I wish there is more research and information available. stay strong and keep your daughter’s self esteem high. It’s very hard emotionally on the family. I wish you and your daughter the best.

Agree with your tic/hyper activity analysis. Thank you for giving optimism, I really hope things will get better.

Thank you @mert. I am also observing that my daughter who used to be the most calm and composed is now hyper active, unable to focus and is very shaky. It breaks my heart to see her this way. she is unable to sit still to attend online classes. I made appt with pediatric psychologist regarding her change in behavior. I am thinking of signing up her for gymnastics as you suggested. I need to enquire if they do in person classes in pandemic or not. It hurts me to see her struggle for an hour in bed with tics while trying to sleep.

Great post. @quan_daniel thank you for posting your sons progress. It will be really helpful if you can please provide the latest update.

Thank you @mert Yes, I explained my daughter about tics and that they will go away eventually. I also told her that she doesn’t need to suppress them. I see her being self aware in social situations. Balloon volleyball sounds so much fun. I will give it a try. Love the pony dressing competition:) I play lot of board games with my daughter. Her tics are worse towards the end of the day. she have a really strict teacher and the online schooling was not working for her. She was under a lot of stress due to this. I spoke to the teacher and requested her to create a more friendly environment. I will check with the psychologist regarding adhd and ocd, it’s worth checking. Thank you. Please keep us posted with your updates. Best wishes to your family.

Thank you so much for your response @mert. I really appreciate it. I understand it’s hard and that I need to have lots of patience and need to give time. As parents, we feel so anxious and feel the need to intervene and help kids get better as quickly as possible. I really like the idea of positive stress, keeping up self-esteem and finding activities that define their strengths. The sudden onset of tics definitely created stress for my daughter. I am waiting for appt with child psychologist to help with her anxiety and stress. I am hopeful that if I take care of that issue, it will lower the tics. Can you please share different ways you create positive stress for your daughter? I will start maintaining a journal as you suggested. Did you get any luck with allergies tests and by avoiding certain foods like gluten, dairy etc? Thanks in advance.

Hi moms, dads, My 8 old girl started vocal and motor tics 3 weeks ago all of a sudden. It came out of no where. Other than having a stressful online schooling, there were no other significant changes. We feel lost trying to figure what is happening since she has no other issues. Her Dr asked us to wait and watch. Lot of you have shared really useful information about various supplements, therapies etc. Can you all please share the latest progress? What worked, what didn’t and any advise for the new joiners? Thanks in advance.

@mert my happy 8 year old girl recently started tics and I feel lost and exhausted. We saw first vocal tic 3 weeks ago which progressed into few other vocal and motor tics. She had a really rough time with online schooling and a strict teacher. Reading through your daughter’s journey and your updates helped a lot. It gave hope. Can you please let me know how your daughter is doing now?