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Starfish

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  1. I haven’t been on this forum in a while, but wanted to add an update as well. My son was virtually tic free again from November until the end of February. Only a very soft breathing noise at times, which was totally unnoticeable unless you were looking for it. We felt this improvement was due to being very strict with his diet again (organic, gluten/dairy free, dye/artificial free, lots of fruit and veg), staying busy and getting lots of exercise, and supplements (magnesium threonate, elderberry syrup, methylfolate/B12). Then the tics returned with a vengeance the day after he was given a load of horribly artificial and dye-filled candies and chocolate at an extra-curricular activity (despite our telling them not to give him these things). 😡 That was 3.5 weeks ago, and the first 2 weeks were pretty bad with a major, constant facial grimace reappearing. I was so heartbroken, but at the same time it helped to feel there was a somewhat controllable reason for it happening (diet). Now we are at 3.5 weeks since that happened, and it I see definitely subsiding. Still there but less. I am really hoping that soon it will be minimal or gone. I have days where I feel optimistic and that this will be manageable, and days (nights) where I cannot stop worrying about what if it gets worse, and all the what if’s. Overall he is a very happy, busy, social kid who is showing up for life just great. He has no idea anything is wrong. I’m thankful for that. It’s been one year now since it all started for us, which is a bit hard to swallow as he now officially meets the criteria for TS. I am still interested in looking into PANS more, since his original onset was very sudden and came soon after being very sick. It’s just hard and very, very expensive here (CA) to find doctors that are knowledgeable. Anyway, long story short, I am grateful for the progress we’ve made, and hopeful that with time and living a healthy lifestyle we will make more progress. My next goal now is working on myself and my own anxiety and attitude. 😅
  2. Thank you Chemar. I will look into the micrograms of melatonin and the other things you mentioned. I appreciate your advice so much.
  3. Hello everyone, I am hoping to get some advice (or at least commiseration). Background: My son, who’s 5, started having both motor and vocal tics 7 months ago at age 4.5. We haven’t gotten an official TS diagnosis because it hasn’t been a full year yet, but I expect he will meet the criteria for it. He has sleep problems for most of his life, but they’ve been worse in the past couple years. His biggest struggle is staying asleep, not so much falling asleep initially. He often wakes multiple times during the night and frequently can’t go back to sleep. He tosses and turns for hours even if we lie next to him. Or he wakes very early for the day, like 4am. On his good nights he’ll sleep 7-8 hours straight, which is “good” for us but I know that still isn’t enough for a child his age. He truly just can’t sleep. He’ll even ask, “mom, how do you fall asleep? I can’t do it.” I now understand his sleep issues are connected to his tic disorder (although he doesn’t tic while sleeping or falling asleep that I have seen). I see how his tics (and behavior/mood) are worse when he gets less sleep, and I want him to sleep better so badly. My husband and I are exhausted too. We’ve worked so hard the past 7 months to improve his diet and overall health, but we can’t *make* him sleep, and I feel that is probably a major missing piece in the puzzle of trying to minimize his symptoms. Has anyone else experienced this? Anyone know of any supplements or ideas that work to improve sleep for TS kids? I’ve tried melatonin (didn’t help and gave him nightmares), we already do lots of magnesium, a nightlight, and have a good calming bedtime routine. Is it worth taking him for a sleep study?so far doctors have been dismissive about it or suggested it’s more of a discipline issue. Or is this just part of TS and not much we can do? Thank you so much for any insight.
  4. Is this it? https://www.homeopathicremediesonline.com/product/clerodendrum-inerme/
  5. Yes my son has both motor and vocal, mainly one or the other at a time. Currently it’s mostly vocal (a short fake cough noise and a sort of throat clearing noise). It’s hard with younger kids since they can’t tell you what’s going on and there’s such a wide range of “normal” behavior. I find my husband and I have a similar dynamic to what you described (and I also see it a lot on this forum where the mom is the more emotional one about it). My husband is much better than I am at staying calm and thinking positive. I just find it so hard to watch and hear the tics sometimes, and I can really go into a spiral of worrying about the future. I know it is so important for our kids that we stay and calm and confident and accepting, so I am really working on that. It does not come naturally for me at all, haha. It helps to talk about it with others here, since I know no one in real life who has dealt with this.
  6. Thank you Cary! That’s so great you are seeing improvement. Thanks for the clarification, I was seeing chiropractors come up when I searched and wasn’t sure if that was the same thing. We are going to try one out tomorrow!
  7. Can anyone share how to find a doctor like this? Would they be called a functional neurologist or something else? I’m in southern ca but would be interested in trying this for my son.
  8. Omg do not watch YouTube!! So far with my son we have tried magnesium (I like the liquid magnesium glycinate by Genestra brand—my son is 60 lbs and takes 125mg, which my ped was fine with), as well as topical magnesium lotion and epsom salt baths, calcium and D, B6, a homeopathic drop called Tic Tamer, omega 3, probiotic, L-Taurine and L-Carnitine (only used these for a couple weeks at a time), passionflower tincture, and a multivitamin. We also used Biocidin (a natural antibiotic) recommended by a naturopath in case PANS could be a factor. Wow that’s a lot when I list it!! I bought most of this on amazon. We also did food sensitivity testing, cut out dyes and artificial stuff, and tried eliminating dairy, gluten, and eggs. I just ordered some essential oils too. It is pretty hard to tell what does/doesn’t work because his tics fluctuate so much that you never really can pinpoint what caused the change or if it was just random. We just came out of 2-3 months with very minimal tics—I was starting to think they might be gone for good—but then in the last couple weeks they returned pretty strongly, even some new ones, so that was very discouraging. Hopefully with more time and repetition we will see more clear patterns and be able to get some control. I can tend to go a bit crazy trying to research and solve the problem, but at least it helps me feel like I am doing something! I keep reminding myself that at least he’s happy and healthy, so many parents face much worse things, but it is still hard not to feel so heartbroken and worried sometimes. It’s so hard to see your baby like this. I hope you guys find some things that help and that things will get better for both of us!
  9. We are in the midst of a somewhat similar experience, which began when my son was 4.5. I find it so frustrating that there isn’t more information on factors that might influence a child’s prognosis with tics, or any way to predict outcomes. Personally what has helped me some is the knowledge that Tourette’s doesn’t have to be the big scary word I thought it was. Actually, it seems that regardless of whether it’s officially Tourette’s or not, tics are likely to improve or even go away by adulthood. In the past few months I’ve reached out to lots of parents, through this forum and others, and so many of their children, even those who had quite severe tics/TS, completely outgrew it by teenage years or at least ended up with only milder tics that they learned to manage. I don’t think the severity in childhood necessarily determines the outcome, and a Tourette’s diagnosis doesn’t mean it can’t get better. Of course the scary part is we don’t know what will happen. Some people’s tics don’t go away or get better. I know I worry a lot about how this will play out for my son and how it could affect his life. So I completely understand how frightening it is and how devastated you feel. After being in it for 6 months, I’m learning that it does get a bit easier, the tics go up and down, and there are things you can try like supplements and diet changes. I’m trying my best to be optimistic, but it is a daily challenge. I’m always here if you want to talk.
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