Santi

My son is on his second trial of Azith 500mg for 5 days now. He was on 140mg 2 weeks ago with behavior improvements. His ASO numbers also went from 983 to 852 in 14 days!! I really thought we were onto something. Unfortunately this week his tics and body movements are much more pronounced, he's restless and school reports lots of inappropriate language while on abx. I must add however that his younger brother's school had a strep incident and the younger brother is acting strange as well. He has lots of OCD symptoms and he's feeling ill. So both boys are "off" this week. Shouldn't the abx be helping my older son if in fact he might have PANDAS? Or is it to soon to tell? Could he really be reacting to the strep that his younger brother may have brought home? Andrea

I've made an appointment with Dr. Kovacevic to discuss high antibody levels for my son and if potentially he could have PANDAS. Other than the obvious..why levels are high, treatments, etc. does anyone have advise what other important questions I should ask him? I am new to this and I want to make sure I cover all territory in our 1 hour phone consult. Andrea

The ASO measurement detects signs that your body has reacted/is reacting to Group A Streptococci bacteria. The anti-DNase test measures antibody production to a different substance, also from Group A Streptococcus. These are two of three tests usually done together to determine if there has been a recent, or a past Strep infection. What do you mean to a DIFFERENT SUBSTANCE also from Group A? What is the third test done? Andrea

ASO is a measure of antibodies produced by the body specifically against Streptococcus bacteria. Anti DNAse is a measure of antibody directed at self cells- indicates harmful autoimmune activity. What exactly does the latter mean in? antibody directed at self cells? Andrea

What exactly is the difference between ASO and ANTIDANSE B antibodies? How do they relate to one another? My son's ASO went down quite a bit on abx but his ANTIDNASE B stayed the same. Any thoughts? Andrea

A single course of antibiotics is not a cure for PANDAS (or it would be very unusual for that to happen). Another strep infection (or any other infection--virus or bacteria) will cause another exacerbation. Most of the kids in this forum find long term abs (to prevent fulture strep infections) helpful. Sometimes even that is not enough to control symptoms, so the next step is to consider IVIG, plasmapheresis, and/or a course of steroids. Some kids (not all) will "outgrow" PANDAS when they hit adulthood. Very helpful...list of FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 If you scroll down, there is a section on antibiotics. Many other topics are covered as well. Thanks for posting this its very helpful! Andrea

Thanks for this info. I will ponder over it a while. Sounds like it is possible for titers to come down fast naturally. Andrea Let me be more specific. Yes, it is possible for titers to drop quite rapidly with or without antibiotics. Antibiotics slow an infection so the body's immune system can catch up. Antibiotics (especially at low dose) do not "kill" bacteria. Only the immune system kills bacteria. Azith is bacteriostatic which means it prevents replication of bacteria -- it doesn't kill it -- it just slows it down. So as long as you have an intact immune system your ASO will come down. However, for lot of people, they can't quite kill off the bacteria faster than it can replicate. For these folks antibiotics are a life saver (literally). Let me know if there is something deeper in your question -- happy to answer or point you at papers. Buster Hi Buster, Thanks for the specifics, I'm a bit slow at this still. My son's behaviors are returning since we took him off abx. I really want to put him back on 500mg Azith.asap But you mention this abx does not kill bacteria but helps immune system ward off bacteria. Am I understanding correctly? I can't wait to get him back on I just want to make the right move. Andrea

What happens after a child is treated with antibiotics successfully (behaviors improve, and ASO levels come down to normal). As I am understanding its not a cure (its like a treatment one would give for anxiety or adhd w/o serious side effects right?). Then when the strep returns the treatment starts all over again? Is this for life? Can it go away on its own in adulthood or sooner? Or is Ivig more promising (in some cases) for a cure? Is this what we have right now for treatment? Just trying to put all my facts to gether because I think we are definetely onto something with my son. Andrea

Thanks for this info. I will ponder over it a while. Sounds like it is possible for titers to come down fast naturally. Andrea

Maybe this one? It does have a response from Dr. T. http://www.latitudes.org/forums/index.php?...;hl=hypothyroid Santi, if you search for hypothyroid you do come up with several threads that may be helpful to you. HUGS! Susan Thanks for the info and the website. Very insightful. Andrea

My son's ASO titers have come down from 984 to 852 in 14 days on low dose Azithro. Its obvious to me that the abx helped. Nevertheless I wonder if they would have come down this much and this fast w/o abx. Does anyone have insight on this? Andrea

Hi Vicki, No we have not tested the family but will do that (I assume this message is for me). I am waiting for Antibody test but I did find out my 7yr. old is hypothryroid. Andrea

I just found out that my 7 year old is hypothyroid. Does anyone know if this has any relation to PANDAS and high antibody levels? Can one trigger the other? Andrea

That blows my mind. Can't believe it happens so fast! Andrea

I put my son on abx and immediately we saw an improvement in behaviors. He was on it for 14 days on a trial basis. He stopped taking abx 3 days ago. Since then his tics seem to be getting worse and he got angry tonight and threw a chair and broke his bedroom window. Is this a coincidence or is it possible that few behaviors have returned because we stopped the abx to soon? How soon do behaviors generally return? Is it only when one catches strep? Andrea

I've been trying to get ahold of him...he is out of the country this week!! His office told me about it but she said that the doctor did not give specifics just that its today or tomorrow.

I was informed by Dr. Kovacevic's office that he is being interviewed either today or tomorrow on PBS. Does anyone have the specifics as to what time? I will try to find the info. Andrea

He was given only 200mg/5ml and he only takes 3.5ml/day. Seems a bit low. He weighs about 58lbs. Which doctor would you recommend if I were to call one of them? Someone who is patient, thourough and can tell me what to do next. Andrea

My son has been on Azith for 4 days now and we are noticing positive changes. He is calmer, much more focused, had a conversation with me, opened up a book on his own and read 2 sentences, wrote a short sentence, and kissed his father on his 40th birthday. What a b-day gift! I'm holding it together (don't want to get my hopes up) but I'm ready to explode with joy. The tics are still there but everything else seems a bit better. If he continues down this path, what do I do next? What does this mean? Does this really mean he has PANDAS or some other form of autoimmune disorder exasberating his disabilities? I can't believe this is happening. I'm soooooooooooooo excited! Andrea

I started my 7 year old on Azithro for 14 days and plan to retest his high ASO level after that. If there are improvements on abx, how soon do you see it? What starts to improve? Not sure if I'm imagining, but his focus seems better (actually sat down and wrote a sentence on his own) but his TS is horrible. Andrea

Faith you did an amazing job explaining tics. My 7 yr. old boy has TS and its really bad. He appears as though he is convulsing all day long. Sometimes he has relief and no tics at all. But when they are bad its horrible. He gets so tired. Andrea

Thats what I'm trying to find out. Dr. K sent me an email to try the Zitro option. Not sure what he meant. Andrea

Does anyone insight to the Zitro option for treating high levels of ASO and DNASE B antibodies in the blood? Andrea

Thank you.

Its really tough getting an abnormal test result on a Sunday when nobody is around. I did manage to get a bit of info. My understanding is that STREP F is a subgroup it actually has STREP A-G within it in a milder form. I am really curious about this now. I will see Dr. Margo T Tuesday to see if it might have something to do with PANDAS. There is definetly something going on with my son and I don't think its the cause of his symptoms but I do think its exasberting them. Andrea