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FraggleRed last won the day on April 13 2022

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  1. “Acetyl-L-carnitine plays a role in detoxification and has antioxidant properties. It also may support the nervous system in many ways beyond its role in energy production, including affecting neurotransmitter production and secretion. It provides acetyl groups for the synthesists of acetylcholine, leading to a cholinergic effect, and it may modulate synaptic transmission. Acetyl-L-carnitine may also affect dopamine and gamma-aminobutyric acid (GABA) levels and activity, and it reduces glutamate concentration in the synapsis, which provides an analgesic effect. Another way that acetyl-L-carnitine may support normal nervous system function is by imparting neuroprotective and neurotrophic effects, which includes influencing the action of nerve growth factor and promoting peripheral nerve regeneration and repair.” I found this information from blog.designsforhealth.com very interesting! Thanks for mentioning l-carnitine, I may try it.
  2. My daughter has had a throat clearing tic as well as a squeaking tic. BUT she is doing remarkably well and is not medicated. The average person would never know she tics. I know that vocal tics are viewed with dread, I just want to assure parents out there that simple vocal tics are no worse than simple motor tics.
  3. I’m so sorry I can’t help you with your question. I’m new to this too. Please don’t give up the fight. (I started antidepressants in May, and for me it’s really helping.)
  4. You could also try a GABA supplement, as well as trying dietary changes. Like removing gluten and dairy. Dietary changes can take many months to see improvement.
  5. You may want to visit a functional neurologist. I had read that that this is most helpful when tics are predominantly on one side. (Take this with a grain of salt as I can no longer find where I read this.) I hope so much that you can find some improvement.
  6. Gluten antibodies especially take a long time to resolve. I know it can feel discouraging.
  7. Hi Chemar, thanks so much for the response. She had a follow up blood test today. The dr ordered another CBC as well as a test for reticulocytes. Unfortunately I won’t get the results for at least two weeks as her dr is quite busy. I’ve read quite a bit that tics can be connected to immunity so I don’t think this can be a coincidence. She had been doing so well I honestly thought the worst was over, but watching her making faces at dinner last night was difficult. I remember when this first started sometime at the end of January. I asked her what she was doing with her eyes. She said, yeah I know. I said, well stop doing it. She said, I can’t stop doing it. (She kept darting her eyes to the side). After much googling I discovered that it was in fact a tic and also that some kids do very well at controlling tics. So I suggested to her, try raising your eyebrows instead of darting your eyes to the side. A few days later she told me it didn’t work and “now I can’t stop raising my eyebrows”. I felt gutted. She’s been on a gluten free diet since February 20. She didn’t immediately get better like I’ve been reading with some, but encouragingly others have reported it took some time to improve. The one thing I’ve been wondering about is if her spleen has been affected by gluten (I’ve read gluten is very damaging to the spleen in celiacs). If that’s the case, her blood count would be affected. Like all of you, I just want this to go away. If anyone out there has any comments to share, please do.
  8. My dd’s tics are noticeably worse today. She had blood work done recently which revealed below normal range of both red blood count and neutrophils (a type of white blood cell). Also her strep titres shows <20. What does that mean? That she does have strep or she doesn’t? The dr said every thing was normal other than blood count. Does anyone have any insights for a worried mom? Has anyone else experienced problems with blood counts?
  9. 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!
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