Very low ASO titers?

[kengela]

I know the topic must have been discussed but I cant seem to find it. My dd6 has very low ASO the last time I had it done I actually wrote it on the lab order myself because the ordering doc ordered the week before but no second test to compare.I learned here that you need 2 about a week apart so when we went back a week later to finish up all the blood work I added the ASO titer. The first test was 6 the second 11.(Quest labs) I know the #s are very low but that is an increse right? I just think of it like this: if the number was 400 then 700 a week later it would be cause for concern,or mean something right?,so why not be concerned in a almost doubled # in our case? She has never been dx with strep (only tested once or twice) and because of allergies hasnt been on abx since before she was 2.I just wonder if I should get another set of titers done?I do have a local ENT who although seemed to never have heard of Pandas when I brought it up she did order ASO titer for me once and told me if I learned more and wanted her to order more tests she would,I wish I didnt have to be the DR so much! We are seeing a DAN doc, who if my child had autism I would be very happy to have him,but Im afraid that hes not as aware in this pandas/pitand area.Hes never even heard of Swedo or Cunningham is it just me or would anyone else take that to mean he probably hasnt researched the subject of pandas too much?Sorry for the lenghty post any info/experince re: low ASO would be appreciated. I have learned so much and am so grateful for this forum.

[peglem]

I know the topic must have been discussed but I cant seem to find it. My dd6 has very low ASO the last time I had it done I actually wrote it on the lab order myself because the ordering doc ordered the week before but no second test to compare.I learned here that you need 2 about a week apart so when we went back a week later to finish up all the blood work I added the ASO titer. The first test was 6 the second 11.(Quest labs) I know the #s are very low but that is an increse right? I just think of it like this: if the number was 400 then 700 a week later it would be cause for concern,or mean something right?,so why not be concerned in a almost doubled # in our case? She has never been dx with strep (only tested once or twice) and because of allergies hasnt been on abx since before she was 2.I just wonder if I should get another set of titers done?I do have a local ENT who although seemed to never have heard of Pandas when I brought it up she did order ASO titer for me once and told me if I learned more and wanted her to order more tests she would,I wish I didnt have to be the DR so much! We are seeing a DAN doc, who if my child had autism I would be very happy to have him,but Im afraid that hes not as aware in this pandas/pitand area.Hes never even heard of Swedo or Cunningham is it just me or would anyone else take that to mean he probably hasnt researched the subject of pandas too much?Sorry for the lenghty post any info/experince re: low ASO would be appreciated. I have learned so much and am so grateful for this forum.

I don't think that rise is significant enough to be well, significant. Do you have any recent positive strep tests or cultures? You may want to check for immune deficiency. My daughter had many, many positive strep tests but titers were almost always low. She once had a rise from 34 to 240, but, although the 240 was technically "high", docs still thought it wasn't high enough to suggest PANDAS. I think they didn't know what they were talking about, but anyway, low titers just don't appear to mean anything- including that there was no infection or that your child is not reacting to strep w/ auto-antibodies.

[dcmom]

There is a stat somewhere..... I think 30% of children do not have high titers post strep.

 

High titers can be meaningful, low titers mean nothing.

[kengela]

So how do we know if the strep is gone?

[peglem]

So how do we know if the strep is gone?

My daughter has been on abx for @ 2 years and I'm still not certain its gone! But, even if it is gone, exposure, which almost certainly is happening at school, will still trigger her immune system to make the antibodies that cross react with brain receptors...so you could try keeping up the abx until all or most symptoms resolve and then try either a lower, prophylactic dose or going off of them altogether. If symptoms come back- then try again.

Sorry, we are all just trying to figure this out for our children w/ help from a very few doctors. There are more questions than answers at this point.

[kengela]

Shes not on any antibiotics,she hasnt had any since before she was 2 just eardrops, she is allergic to amox, and had a "serum sickness" reaction to Omnicef. Thats a major worry to me is that she has something,like strep that has never been treated. Our current DAN dr. says hes willing to start antibiotics once all his supplements(multivit.,enzymes,fishoil,probiotics-we are alreadyGFCF) are well underway. But as I said before, Im not confident that hes very knowledgeable about Pandas/Pitand.At least he does know of it,and believes it exsists,which is more than I can say for the other Drs weve seen.