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Mommymom

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Posts posted by Mommymom

  1. 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. 

  2. 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. 

  3. 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. 

  4. 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. 

  5. 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. 

  6. 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. 

  7. 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.

  8. @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? 

  9. @usernamecat I just read your message and I am in the same boat as you. My 8 year old daughter never had tics before.  3 weeks ago she started her first tic with a hhmmm sound which progressed into few vocal and motor tics. She is also doing online school in California. I feel lost and exhausted. How is your daughter doing? Can you share if anything worked in managing tics? I am at loss how little help we get from dr, all I got is wait and see. 

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