deagar Posted June 17, 2006 Report Posted June 17, 2006 Can anyone tell me what is considered "off the charts" or what levels are considered "high" for strep titers when blood tests are taken. My sons has been tested 3 times and two of the times were after a sudden onset of tics. We put him on Amoxicillian and increased his Neurontin and things slow down a lot. I haven't ever seen a chart that states at what point a child should be put on antibiotics to fight strep. Also, if PANDAS is a pediatic disorder, at what point can we hope it will go away? I don't know if my son has PANDAS but there is a correlation with high strep titers and sudden outbursts of tics. It could be associated with something else also but at this point we are still searching. We have been fortunate that his first outbreak was about 2 years ago and he just had his second one about a month ago. So at this point I don't think going on antibiotics continuously is something we should try. Thanks - Deanna
Chemar Posted June 18, 2006 Report Posted June 18, 2006 Deanna this is something that Ronna (Ronnas) or Alison (ad_ccl) are most experienced in and so you could try sending them an email or a PM via the system here HTH
ad_ccl Posted June 20, 2006 Report Posted June 20, 2006 My son has PANDAS. He has had several blood tests done over the last 2 years. When he first got sick his ASO titers were around 850, then a month or so later 1200, normal is under 60 ( I think for the test he had done - tests can vary) We think it went up to much higher than 1200 - probably up to around 2000 which it can go up to, then was on it's way back down when we tested at the 1200 mark. It usually is highest a few few weeks after the infection - and we had tested a week after the strep (we think). From what I have read it should come back to normal levels within a few months. His has taken a really long time to come down, he got back down to around 750 last December and he was tested a few weeks ago and was at 560 - the lowest he has been. During the past 2 years he has been on prophylactic antibiotics, so in theory has not had a strep infections during this time. I have e-mailed NIMH about this and it does seem that some kids have higher numbers and they don't come down as quickly. I am hoping that over time we continue to see a decrease in numbers, we do not test too often. The titers show the child has had a recent step infection but does not indicate a present strep infection. Regarding when a child should be put on antibiotics to fight step, my understand is anytime there is a confirmed strep infection it should be treated. I wish I had an answer about when the PANDAS will go away. My son was quite sick early on and is presently doing really well, he has never had an episode like the one's he had in the first few months. He is turning 8 - and was had just turned 6 when it happened. ( I see my middle son's friends who are turning 6 now and they seem so small - I can't believe all that my son has been through) He is symptom free much of the time and when he does have symptoms they are minor and not noticed by others. What we see as triggers currently are allergies - seasonal - aeirus seems to eliminate this, exhaustion from sports, being over tired, he used to react to pizza at pizza day etc but seems to manage that ok now. I think his body continues to heal and he can manage the stresses that used to cause a reaction. Some of the things we have done to help his body heal, the blood work and determining food allergies, going on vitamins - this is now very reduced - removing all screens then replacing with an LCD screen, limiting florescent light exposure. Hope that helps a little - please ask any questions.
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