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lost99

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Posts posted by lost99

  1. Sure that would be great. We can't find a pandas doctor here so all I could get was two weeks of amoxycillin for this current flare, which I think wasn't long enough and has now caused a crazy intense rebound reaction. How old wasyour son when you started cbd oil?  I would love to try it but we are in New Zealand and it is still illegal here. unfortunately. Maybe one day!

  2. Has anyone tried and had success (or failure) with gaba? I was just reading some amazing studies about it online, then jumped on iherb to order and read some negative stuff about it like that you should only use short term, that you need to wean on and off etc. I did read that you should change your diet to foods that increase gaba naturally but my son already eats a diet rich in these foods. We are in the middle of dealing with multiple motor tics, and also a vocal tic that can only be described as a loud zombie like humming noise (it doesn't stop from the time he wakes to the time he sleeps) and it is (and I mean this from a loving mom point of view!!!) Driving everyone in our house crazy, not to mention himself. He is unable to attend school at the moment because of it, and is feeling very emotional and not wanting to leave the house :( thank you!

  3. Hi there yes please that would be great! I was reading gaba was amazing for tics (currently we are in the middle of a flare that can only be described as very loud zombie like humming that goes ALL day) . But the after researching I read some negative things about it and bite I'm confused. Any advice or if you are still taking wild be great thanks! Did you use it only during flares? Do you wean on and wean off? How much are you giving him? My son is 11. Thank you!!!

  4. My son, 11, has battled with tics for years although they have always been mild and mostly very manageable. Suddenly out of the blue a few weeks ago he developped a very intense humming kind of noise, very loud and constant, he is almost never quiet. In between every sentence he kind of hums (loudly!), even when he is reading or on the computer etc. In a bout of tears he mentioned he is struggling with very intense head nodding as well (though I haven't noticed this yet). He also has palallia, and stutters quite bad at the moment. We have tried a number of supplements, and have just started cbit therapy (only one session so far though). I have tried essential oils etc, but nothign pharmaceutical. I have recently been researching taurine and nac but have read positive/negative from both of thes so I haven't started giving him these yet. Starting tomorrow we are going gluten free, not dairy yet. Mostly I am looking for advice on supplements, as he has missed nearly 10 days of school in the last two weeks due to his tics. 

    Other things I can think of....

    He has had a cold sore from since I can remember, and is on a prophylactic antiviral. He had major improvement after three weeks of clarythromycin for a cough (so possibly pans??)  but I can't find a doctor who will prescribe me these without an obvious illness to have another try. I'm really at a total loss as to what is happening with his body and mind. We live very rurally in New Zealand, and it is almost impossible to find a decent health practitioner here. 

    Off and on I give him melatonin (only 1.5 mg) so he can fall asleep at a decent hour, I'm wondering if this could affect his dopamine levels and exacerbate tics - does anyone have any experience with this?

    That's a lot of random information, but maybe someone will have a few suggestions!

    Cheers

    Kristen

     

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