ad_ccl Posted November 27, 2007 Report Share Posted November 27, 2007 Hi everyone, I just wanted to share this - my PANDAS son was exposed to strep in October and tics increased (understatement!) - but were really only vocal - but enough that he was off school as they were loud and disruptive. Like a loud hmm deep in his chest. They were at times every second. I was really having a hard time with it - as he had been doing so well - I had a great fear that the azith was just no longer working - we had gone on 3 rounds of full doses and each time things got a bit better then increased when we went on the lower dose. I had started to look into other meds - as I felt he could not live like this - we got very strict with diet as well. I asked Chemar for advise and she suggested the l-carnitine for vocal tics - which I had read about a few times before but never tried (we do use l-taurine when eye tics emerge and it works really well) Anyway - I said a prayer and gave him the l-carnitine hoping for a miracle - well it was just that. By the next day things were much quieter (literally overnight) - there were still tics but way softer and much less frequent. Fast forward a few days and tics are pretty much non existent - I hear a few throat sounds in the morning, and going to bed - but nothing anyone would notice as anything other than a normal thing a kid would do - unlike a few weeks ago when people would turn if they heard him - he would have flurries of loud noises. I just wanted to share this - as maybe it could help someone at sometime. Thanks Cheri as always for all you do to help guide us (and support us) all through this. I am always so grateful for this site and all those who contribute with both their questions and their answers and suggestions. Link to comment Share on other sites More sharing options...
faith Posted November 28, 2007 Report Share Posted November 28, 2007 Thanks for posting that, as I am usually dealing with a vocal with my son. Once I tried it and felt he was doing it more. I used the "acetyl" l-carnitine. Is the one you used just l-carnitine, and may I ask which brand? Funny, though thankfully, right now he seems to be waning with that (and I have no idea exactly why, but I'm working on it). But I know what you mean with the quieter, softer, vocal. When things are good, that's pretty how much how I'd describe it. So thanks for that, it is always good to have info in our files! So glad you have found something natural to help your son--I think your prayer was heard. Faith Link to comment Share on other sites More sharing options...
Chemar Posted November 28, 2007 Report Share Posted November 28, 2007 glad to see you posting this encouraging news, Alison and so glad that the L-carnitine worked for your son too as it did for mine. my son had a screaming tic for a couple of weeks and I truly was desperate to find some relief for him as it was driving him (and I confess, us,) batty....it was very loud and was one of those when OCD and TS tics blend. It started a vocal tic that then got louder and louder and by that time he started "having to do it" compulsively and then it became an obsession to get it "just right" anyway, I found some info on L-carnitine and vocal tics and ran it by the doc's and we decided to try him on the 500mg a day and voila! the screaming vocal tic began to wane. he stayed on the carnitine for a couple of weeks and then doc suggested we take a break and see but that one never returned. My son does still get occasional vocal tics. He tried the l-carnitine again a couple of years ago but found it then made him feel a bit "wired" and so he decided not to take it again. Faith, re the acetyl L-carnitine vs just the L form, it seems to depend on the individual as to which works best. I am not sure but I think that the "over vs under methylated" theory may play a role in which is better tolerated. My son took the L version. anyway, here I go rambling again *blush* but it really was so good to see that "it has passed", Alison and also to explain how I came to share what worked for my son when Alison was looking for pointers. do remember, for younger and lightweight kids especially, always do check doseage of amino acids with a doc first. My son was 11 and quite heavy at the time he took it, which was why the physician suggested the 500mg dose daily. praying things stay waned all round, Alison. Thanks so much again for sharing your positive result Link to comment Share on other sites More sharing options...
kkver Posted November 28, 2007 Report Share Posted November 28, 2007 ad_ccl I am going through the same fear of Azitromax not working. My whole family got exposed to strep from last week and all 4 of us are on azithromax. My Son which had similar tics ( motor & vocal) issues earler in the year after strep started to shrug his shoulders . I am keeping him on azith. course for 10 dys and wil know more once it finishes. Keeping my fingers crossed believe god will be there to help. Link to comment Share on other sites More sharing options...
kevinst Posted February 27, 2010 Report Share Posted February 27, 2010 Hi, New to the forum. You all have giving me some hope for my son's vocal tics esp. since I am not looking to medicate him. Can anyone tell me the dosage ratios you have been using of L-carnitine per body weight for your children. Thank you. Kevin Link to comment Share on other sites More sharing options...
Chemar Posted February 27, 2010 Report Share Posted February 27, 2010 hi we used it when my son was 12yo at 500 mg daily I dont remember his exact weight at the time Link to comment Share on other sites More sharing options...
britmom Posted February 28, 2010 Report Share Posted February 28, 2010 Just wanted to add that we have also had success with L-Carnitine for our son's vocal tics. We use Twinlabs L-Carnitine and give him one 250mg capsule a day whenever a vocal starts to appear. It has always worked for us within 2 or 3 days. Our son is now 75 lbs but we have been using this dose for a couple of years. I tend to keep him on it for a few days after the tic has gone. We've probably used it on 3 or 4 occasions in the last 3 or 4 years and it's worked every time. Link to comment Share on other sites More sharing options...
kevinst Posted February 28, 2010 Report Share Posted February 28, 2010 Hi, New to the forum. You all have giving me some hope for my son's vocal tics esp. since I am not looking to medicate him. Can anyone tell me the dosage ratios you have been using of L-carnitine per body weight for your children. Thank you. Kevin Hi Chemar and britmom. When you all used the L-carnitine was it L-carnitine or acetyl L-carnitine, I've been hearing about differenecs and to not switch between the two. AND its sounds like people use it for their child for a couple of days or so but NOT every day. Do I understand you correctly in that the tics lessened or even disappear although the carnitine is only given a couple of times during a particular stretch of time? Thanks again. Kevin Link to comment Share on other sites More sharing options...
Chemar Posted February 28, 2010 Report Share Posted February 28, 2010 we only used l-carnitine not acetyl, tho i know some people prefer the latter my son only used it as needed daily ie when the vocals were waxing, he used it off and on for about a year Link to comment Share on other sites More sharing options...
kevinst Posted February 28, 2010 Report Share Posted February 28, 2010 To Chemar and britmom (and anyone else who can help), Thank you for your replies, I posted another response but I didnt see it on here, so I apologize if this is redundant. The carnitine you both use is L-carnitine or acetyl-L-carnitine. Been doing some reading about how they are different and to not switch between the two. And from what you have said, it sounds like you treat your child with the L-carnitine for a couple of days and the vocal tics remit. And then you keep them on it for maybe two or three other days. You stop the supplement and then the tics remain absent for a period of time. And it sounds like a fairly long period of time before they return and you repeat the process. Is that right? Thanks again. Kevin Link to comment Share on other sites More sharing options...
Fixit Posted March 2, 2010 Report Share Posted March 2, 2010 To Chemar and britmom (and anyone else who can help), Thank you for your replies, I posted another response but I didnt see it on here, so I apologize if this is redundant. The carnitine you both use is L-carnitine or acetyl-L-carnitine. Been doing some reading about how they are different and to not switch between the two. And from what you have said, it sounds like you treat your child with the L-carnitine for a couple of days and the vocal tics remit. And then you keep them on it for maybe two or three other days. You stop the supplement and then the tics remain absent for a period of time. And it sounds like a fairly long period of time before they return and you repeat the process. Is that right? Thanks again. Kevin what about L-Cranitine Fumarate i didn't realize what was when i bought it (the Furmarate) is that ok is it the fact it burns fat ...and maybe its the fat deposits the brain can't take that do the vocals????? i think my son is starting a screaming tic????????????????? it says l carnintine Furmarate 855mg yeilding 500m l-carnitine other ingredients.....magnseium stearate, silicon dioxide, cellulose. Link to comment Share on other sites More sharing options...
Chemar Posted March 2, 2010 Report Share Posted March 2, 2010 honestly done know the effect of fumarate (fumaric acid) this is the l-carnitine we used http://www.iherb.com/Now-Foods-L-Carnitine...psules/300?at=0 Link to comment Share on other sites More sharing options...
Chemar Posted March 2, 2010 Report Share Posted March 2, 2010 To Chemar and britmom (and anyone else who can help), Thank you for your replies, I posted another response but I didnt see it on here, so I apologize if this is redundant. The carnitine you both use is L-carnitine or acetyl-L-carnitine. Been doing some reading about how they are different and to not switch between the two. And from what you have said, it sounds like you treat your child with the L-carnitine for a couple of days and the vocal tics remit. And then you keep them on it for maybe two or three other days. You stop the supplement and then the tics remain absent for a period of time. And it sounds like a fairly long period of time before they return and you repeat the process. Is that right? Thanks again. Kevin Hi Kevin we used the l-carnitine initially for about a month my son had been dealing with a loud shrieking tic, and it took it away pretty quickly he has never since had that kind of intense vocal tic (thankfully!) he used it a few more times that year when other vocals became a bother to him. Then, as his vocals were so mild and not affecting him in public much, he stopped using it for a couple of years in 2006 he developed a loud UH around the time of stress from his then undiagnosed Crohn;s he tried l-carnitine again and did not like the reaction of edgy/spacy mood reaction it gave him that time and so he has never used it again Link to comment Share on other sites More sharing options...
Fixit Posted March 2, 2010 Report Share Posted March 2, 2010 honestly done know the effect of fumarate (fumaric acid) this is the l-carnitine we used http://www.iherb.com/Now-Foods-L-Carnitine...psules/300?at=0 I'm sorry if you've said this already.....but why dose this work....does it have something to do with removing fat from around the brain?????? Link to comment Share on other sites More sharing options...
Chemar Posted March 2, 2010 Report Share Posted March 2, 2010 i dont know why it works...havent ever checked into that. it was recommended by our physician Link to comment Share on other sites More sharing options...
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