High ASO & AntiDNaseB titers

[worriedmommy]

I posted earlier today that we just got ds4 titer levels. His ASO is 369, with the normal range for his age being 0-70. His AntiDNase is 346, with the normal range for his age being 0-256.

 

This is my non-PANDAS child (who we are questioning may have PANDAS). I suspected strep on 4/12/10, but his rapid & 72 hour came back negative. At this point, I'm curious what these titer levels mean. Does he have strep, or are these from a past infection? To determine this do we have to retest to see if they're going up or down?

 

We started him on a 5 day course of Zithromax tonight.

 

Thoughts?

[saidie10]

Hi there from a worriedmommy too! I wish I had answers for you on the titers. We are still trying to figure these things out on our end too. I believe that elevated titers and DNase would indicate exposure to strep at some point in the recent past? According to my Neurologist (and I am confident other doctors may say something different) it can take up to 12 months for titers to drop to normal after an infection. In a perfect world, we all would know what our children's normal titers were before any exposure to strep and then we would know how high they got during an infection and then we would also see it rise during an exacerbation in symptoms. Then of course is the fact that some children's titers don't rise with symptoms even though they suffer from PANDAS! Oh if only in a perfect world!

 

Hope you find the answers you are looking for. I am sure others on the board are much more versed in all of this as I am very new!

 

I posted earlier today that we just got ds4 titer levels. His ASO is 369, with the normal range for his age being 0-70. His AntiDNase is 346, with the normal range for his age being 0-256.

 

This is my non-PANDAS child (who we are questioning may have PANDAS). I suspected strep on 4/12/10, but his rapid & 72 hour came back negative. At this point, I'm curious what these titer levels mean. Does he have strep, or are these from a past infection? To determine this do we have to retest to see if they're going up or down?

 

We started him on a 5 day course of Zithromax tonight.

 

Thoughts?

[sf_mom]

My husband has high titers and I inquired with several Dr.'s on what to do....

 

The majority answered that if he is symptomatic for strep and titers were elevated they would treat with antibiotics. My next question was... What does it mean to be symptomatic if the strep is hiding out in his body other than tonsils? AND, nobody had a good answer for me. However, my husband has had some unexplained GI and reflux issues so we have been treating him. His original titers were ASO: 283 and Anti-DNAse-B: 680. After his first round of antibiotics his ASO: 249 and Anti-DNAse-B 680. So his ASO was falling indicative of infection.

 

He is currently on another round of antibiotics and we will retest his ASO and Anti-DNAse-B in the near future to see if its still moving in proper direction.

Edited May 6, 2010 by SF Mom

[worriedmommy]

My husband has high titers and I inquired with several Dr.'s on what to do....

 

The majority answered that if he is symptomatic for strep and titers were elevated they would treat with antibiotics. My next question was... What does it mean to be symptomatic if the strep is hiding out in his body other than tonsils? AND, nobody had a good answer for me. However, my husband has had some unexplained GI and reflux issues so we have been treating him. His original titers were ASO: 283 and Anti-DNAse-B: 680. After his first round of antibiotics his ASO: 249 and Anti-DNAse-B 680. So his ASO was falling indicative of infection.

 

He is currently on another round of antibiotics and we will retest his ASO and Anti-DNAse-B in the near future to see if its still moving in proper direction.

 

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep.

[sf_mom]

We tested my husband shortly after the first round of antibiotics.

 

The response I got from one of the Dr.'s (strep expert) aware of our titers situation said 'it appears your husband shared' your children's illness. I would definitely consult with a PANDAS expert a.s.a.p for your son's benefit. How does the Neuro know he didn't have/has an active infection that is resolving without retesting titers for directional change? At this time, they really do not know how far reaching an undiagnosed infection could reach.

 

-Wendy

[faith]

My husband has high titers and I inquired with several Dr.'s on what to do....

 

The majority answered that if he is symptomatic for strep and titers were elevated they would treat with antibiotics. My next question was... What does it mean to be symptomatic if the strep is hiding out in his body other than tonsils? AND, nobody had a good answer for me. However, my husband has had some unexplained GI and reflux issues so we have been treating him. His original titers were ASO: 283 and Anti-DNAse-B: 680. After his first round of antibiotics his ASO: 249 and Anti-DNAse-B 680. So his ASO was falling indicative of infection.

 

He is currently on another round of antibiotics and we will retest his ASO and Anti-DNAse-B in the near future to see if its still moving in proper direction.

 

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep.

 

It is possible that the 'mounting a response' is actually a good thing, it means his immune system overcame the exposure and he himself 'didn't' get the infection..... maybe that is all the titers really are.....the soldiers mounting a response......just speculating.

 

I have questioned the experts too, and Dr. L. said that if someone else is sick, it shouldn't be a problem unless the child actually gets it and his immune system is compromised. I know some believe that if someone else is sick, it is possible for their child to react, but if they don't get the actual infection, I'm not sure I understand that. I think you just have to keep close look, and if you really beleive your child is reacting to others, then go by your instincts, but I am not positive this is the issue for everyone. The fact that the titers don't really tell the whole story is a little confusing. no one here really knows..

[worriedmommy]

My husband has high titers and I inquired with several Dr.'s on what to do....

 

The majority answered that if he is symptomatic for strep and titers were elevated they would treat with antibiotics. My next question was... What does it mean to be symptomatic if the strep is hiding out in his body other than tonsils? AND, nobody had a good answer for me. However, my husband has had some unexplained GI and reflux issues so we have been treating him. His original titers were ASO: 283 and Anti-DNAse-B: 680. After his first round of antibiotics his ASO: 249 and Anti-DNAse-B 680. So his ASO was falling indicative of infection.

 

He is currently on another round of antibiotics and we will retest his ASO and Anti-DNAse-B in the near future to see if its still moving in proper direction.

 

How long after his abx did you retest him? I just came from the neurologist (for dd w/PANDAS) and mentioned ds titer levels. The neuro said that these titer levels only mean that he mounted a response to strep, but didn't necessarily have an infection. Is this true? I find it odd that on 4/12/10 he had red swollen tonsils, and a body rash that looked exactly like the one he has last year when he had strep, and now has elevated titers...but he didn't "have" strep.

 

It is possible that the 'mounting a response' is actually a good thing, it means his immune system overcame the exposure and he himself 'didn't' get the infection..... maybe that is all the titers really are.....the soldiers mounting a response......just speculating.

 

I have questioned the experts too, and Dr. L. said that if someone else is sick, it shouldn't be a problem unless the child actually gets it and his immune system is compromised. I know some believe that if someone else is sick, it is possible for their child to react, but if they don't get the actual infection, I'm not sure I understand that. I think you just have to keep close look, and if you really beleive your child is reacting to others, then go by your instincts, but I am not positive this is the issue for everyone. The fact that the titers don't really tell the whole story is a little confusing. no one here really knows..

 

I've been thinking about this whole "mounting a response" to strep theory non-stop since yesterday. I find it interesting that the neurologist told me with absolute certainty that my ds (non-PANDAS) high titers don't necessarily mean he had strep. The said he may have had it, but he also may have just been exposed to strep and his body "mounted a response" to the bacteria by creating antibodies which then fought it off before he could actually get strep. OK...I get this.

 

What I don't get is that the same neurologist, during the same appointment, found it hard to believe that dd's major PANDAS exacerbation, that occurred when there were 11 confirmed cases of strep throat in her classroom, could not have been a result of "exposure". Wouldn't the same theory apply?? Couldn't her body come in contact with strep, and her body "mounted a response" by creating antibodies, which fought off the strep (so she didn't get it), but then went on to continue to attack her brain. It seems to me that this neurologist explained the "canary in a coal mine" theory regarding ds's high titers, but she doesn't want the same to apply when it comes to a PANDAS exacerbation.

 

Am I missing something?

Edited May 8, 2010 by worriedmommy

[thereishope]

Yes, it sounds like he contradicted himself. Did you politely remind him that PANDAS is caused by antibodies, not strep itself?

[worriedmommy]

Did you politely remind him that PANDAS is caused by antibodies, not strep itself?

 

No, dh and I realized about 20 minutes into the visit that we had "lost" this neurologist. So frustrating. This was our 2nd visit with this one. The first was so promising since the neuro said she'd treated PANDAS kids, and said that she definitely didn't think dd, who was presenting with constant tics, had Tourette's.

 

This visit, however, was terrible. Even with dd's history of 2 major exacerbations in the past 2 months, both when exposed to strep, and both showed improvement within days of starting abx, she wasn't "believing". We showed her dd's Cunningham score of 150, and found that she had never heard of the Cunningham test. She also wanted to know why dd had done a steroid burst, as she's never heard of doing that.

 

She ended the appointment telling us that while she believes dd's onset was triggered by infection, that once this happens to some kids, they simply go on to "develop" Tourette's. Since dd is doing quite well now (on day 24 of azith, and day 17 post start of steroid burst) that we should "take a break from all medicine & doctor's appts and let dd be a kid for a while." -- Apparently, she doesn't know that "being a kid" is much easier when you're not having 10,000 tics a day!!