WorriedMum

Hi Nurse Mom, I just saw your message now. My daughter has gotten stuck in tics 3 times. The last was awful she didn’t know who were (she thought we were all spiders). She kicked us all away including her sister in the head. I called the her doctor who wasn’t concerned. How is your daughter now? It is terrifying to watch.

It is awful when your child starts ticcing. You feel so hopeless. I think I was on the verge of depression in the early days (July 2019). When my daughter starting ticcing, it was like she suddenly developed ADHD at the same time and was bouncing off the walls. Thankfully after a month or two the hyper active behaviour stopped. My daughter has since been diagnosed with chronic tic disorder and anxiety. I have spent a fortune on various treatments in the hope of a cure. She started GABA last week (read about it on here) and her tics are pretty much gone. I know it could be a wane period but we haven’t had a wane period in 6 months. She said she feels calmer. Things we have tried: Accupuncture - didn’t work Massage - didn’t help tics but helped her to sleep CBT - helped a bit with anxiety Removing gluten from her diet - didn’t work Removing dairy from her diet - didn’t work. Essential oils - didn’t help Magnesium - still give it but unsure if it helps taurine - didn’t work l-carnitine - don’t work vitamin b complex - still give it but unsure if it helps psychiatrist sessions - don’t help CBD oil - I do think it works. Have stopped this with the GABA. Melatonin - works for sleep but only give it if the tics are bad at night. GABA - so far so good

Thank you so much for replying to me. I really appreciate it. It is very hard to find positive updates on the web. My daughter is 8. She started a very mild throat tic about eight weeks ago. All information said it would pass and not to draw attention to it. So we didn't and it did pass. Two weeks after the tics came back but this time (about 10 days now) with the frozen limb/tongue ones. Then locking her hands like a dog begging and stamping her feet. Also blowing. Her latest one is sucking her stomach in and out which really hurts her after a while. It feels like there is an alien in my child. It is so hard to watch my usually calm, sweet child hurt like this. She knows she is doing it. I worry about her when she is out of my sight. Is she doing it in front of her friends? Will they make fun of her? How can this strike so suddenly at this age? How will this affect her confidence? What will life look like for us from now on? These are the thoughts racing through my head every night while I toss and turn. She usually gets worse at night which doesn't help. She does have a dairy intolerance so she was low on dairy anyway. I figured no harm to try the gluten until I wait to see a specialist and we are trying to give her mostly natural foods. I have started since Saturday supplements of: Magnesium, Probiotic, Omega 3, Vit B/C/D. I also have a relaxing oil that you use on the tongue. I will try the oils you recommended. I am so glad your son has shown such improvement. Well done to you and your wife for figuring this thing out for him. I am sure it wasn't an easy journey. I hope to be in your position this time next year. Thank you again for replying and for your wife for updating. I really needed hope today.

Thank you so much for your update. My daughter has started ticcing recently and we are out of our minds with worry. I can’t sleep and it is all I think about it. She sounds similar to your son. She has a mix of tics and the most scary one looks like a seizure where she locks into a ball with her tongue sticking out. It can last up to 40 mins where she remains in that locked state. The less scary but still worrisome tics are motor and vocal. I find myself watching her all the time on high alert. I am so worried about her. We have removed gluten and dairy from her diet but it has only been a few days. I am interested in the oils. Did you add Jasmine in the end?