Please explain Wax and Wane

[kallik]

Faith - I posted a while back about our amazing success with L-Carnitine for vocal tics (thanks Chemar). After our exposure to strep my son had a terrible vocal tic - non stop and loud - it cleared up with L-Carnitine. It was a mini miracle!

Could you tell me how much L-carnitine you gave your son? My son is ten. Thanks.

[faith]

ad,

Thanks, I did try that a few months back. It was acetyl l-carnitine, (was that the same?), but I was convinced it increased the vocal after a day or two so ran scared. how long did you use to see improvement? Was that while on antibiotics? How do you know it was the carnitine and not the antibiotic that helped?

 

Kalik, are you still dealing with vocals? (PANDAS or no?)

 

Thanks,

Faith

[ad_ccl]

In October we had done three rounds of full dose antibiotics - which would help a little but not tons for the vocal tic he had - it was loud and intrusive. I was pretty desperate as I felt that the antibiotics were just no longer working - much like how amox stopped working for us a few years ago - and I knew there really were not any other options - it was a hard time. I asked Chemar for advise and as always she was fabulous - I knew I had read about something for vocal tics. She suggested L-Carnitine. My package says L-Carnitine Fumarate. My plan was to give 250mg but the bottle I bought was mislabeled and they were actually 500mg capsules. The improvement was literally overnight - the tic was much milder the next morning and within a few days was pretty much gone. I am convinced it was the l-carnitine and not the antibiotic - I have a feeling at that time he may not have even been on the full dose of antibiotic, I had tried a few rounds hoping that would work -then had to look at alternatives. My son is about 70lbs and 9. We gave him the l-c for a couple of months - I think I was scared to stop. I still give him 250mg every once and a while. He has absolutely no vocal tics now - and hasn't for a few months - and no visible tics other than a very periodic nose squish that no one would notice. Most importantly he is so happy, no emotional lability and he is focusing well in school.

[michele]

My sons symptoms wax and wane with exposure to illnesses and strep. He takes omnisef 250 mg. once a day and it really helps from him getting the strep, however even being exposed to others or getting ill makes him get symptoms. Usually the obsessiveness such as running to the potty to try to urinate over and over. Also getting stuck on ideas or marked likes. He will loose focus easily and then gets very emotional. He becomes hard to reason with or even deal with. Everything will become a struggle. When he gets the tics they are either eye blinks, finger movements or cracking of joints. When I gave him dramamine (don't ever give because it effects the nervous system) he had a bad episode that really caused the worse tics I had seen. Episodes can last from a month to four months is our longest. Behaviors seem to shift and become more pronounced at different times. Like now the attention issue is the biggest problem. Before it was the emotional, then it was the cracking and the obsessing. Also the fine motor has been affected. He has handwriting delays. It seems to constantly change. Although he doesn't get the strep we still get the episodes. Also it never goes 100% away just gets better between episodes. My advice is don't let him get strep. Each exposure will make the behaviors more pronounced and cause damage. Try to get a prophylaxis antibiotic. We waited too long (4yrs)and now my son has permanent effects that may have not been present had I kept him from getting strep sooner. During episodes I up his antibiotic to one tsp twice a day. I have been cutting back on supplements. I think the 5HTP was making him more hyper in school. He was getting into trouble and had never before. Right now I am trying to figure out how to deal with the attention thing at school. It is a constant struggle to try and figure this out. God bless.

 

Michele

 

In October we had done three rounds of full dose antibiotics - which would help a little but not tons for the vocal tic he had - it was loud and intrusive. I was pretty desperate as I felt that the antibiotics were just no longer working - much like how amox stopped working for us a few years ago - and I knew there really were not any other options - it was a hard time. I asked Chemar for advise and as always she was fabulous - I knew I had read about something for vocal tics. She suggested L-Carnitine. My package says L-Carnitine Fumarate. My plan was to give 250mg but the bottle I bought was mislabeled and they were actually 500mg capsules. The improvement was literally overnight - the tic was much milder the next morning and within a few days was pretty much gone. I am convinced it was the l-carnitine and not the antibiotic - I have a feeling at that time he may not have even been on the full dose of antibiotic, I had tried a few rounds hoping that would work -then had to look at alternatives. My son is about 70lbs and 9. We gave him the l-c for a couple of months - I think I was scared to stop. I still give him 250mg every once and a while. He has absolutely no vocal tics now - and hasn't for a few months - and no visible tics other than a very periodic nose squish that no one would notice. Most importantly he is so happy, no emotional lability and he is focusing well in school.

[Chemar]

hi Michele

 

some people cannot tolerate 5HTP

My son does well on it but it makes my husband edgy and restless..."hyper" I guess

 

the different reactions probably have to do with each individual's neurotransmitter biochemistry