ASO & DNASE way down now. What does it mean?

[beeskneesmommy]

Hi:

 

I need some help understanding this. Since last June, my son (4) has had ASO of 400+ and DNASE in high 900's. He had Strep titers tested June 2010, Sept. 2010, Jan. 2011 and last week, May 2011. He started BID antibiotics last Sept. 2010, which did not seem to make a dent in the titers, in fact, his last DNASE, last Jan., actually went up. Sooo, now, about 4.5 months later, his titers are ASO 105 and DNASE 159. I am not looking a gift horse in the mouth. It is true that his PANDAS symptoms were almost non-existent from last Jan - the end of last March, likely due to starting a diff. ABX called Cefdinir. However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers. Can anyone shed some light upon PANDAS symptoms seeming to return even thought titers have decreased significantly?

[Bill]

Hi:

 

I need some help understanding this. Since last June, my son (4) has had ASO of 400+ and DNASE in high 900's. He had Strep titers tested June 2010, Sept. 2010, Jan. 2011 and last week, May 2011. He started BID antibiotics last Sept. 2010, which did not seem to make a dent in the titers, in fact, his last DNASE, last Jan., actually went up. Sooo, now, about 4.5 months later, his titers are ASO 105 and DNASE 159. I am not looking a gift horse in the mouth. It is true that his PANDAS symptoms were almost non-existent from last Jan - the end of last March, likely due to starting a diff. ABX called Cefdinir. However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers. Can anyone shed some light upon PANDAS symptoms seeming to return even thought titers have decreased significantly?

 

 

I seem to recall that high ASO and DNASE numbers follow an infection - the numbers rise in the weeks after the fact and then can take months to return to normal. I do not believe that the numbers reflect current but are better used for trending purposes.

 

I may be wrong on that though. Anyone else?

[Buster]

Hi Beeskneesmommy

 

A number of items in your post. You might want to take a quick look at the 2008 thread: http://www.latitudes.org/forums/index.php?showtopic=3756

 

which tries to explain some of the research around ASO and Anti-DNAseB.

 

The only properly studied effect has been rising ASO or rising Anti-DNAseB. If you have chronically elevated or falling titers, then basically nothing is known. It literally is not studied how long it takes for these antibody levels to fall.

 

When the titers are rising, it means that the child had a strep invasion 4-6 weeks prior (ASO rise) or 8-10 weeks prior (AntiDNAseB rise). However, studies indicate that ASO rises in only 54% of the children with confirmed GABHS colonization. Even when adding in AntiDNAseB titers are confirmatory in on ~70% of cases -- meaning ~30% don't show such a titer rise.

 

When we ran our informal (ala non-scientific) study on ~400 children on this forum we found :

• Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness
  
• Whereas 54% of boys had elevated ASO or Anti-DNAseB
   
  
• In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture
  whereas 14% of boys had this situation.
  

 

What I found interesting was that boys appeared ~4x more likely to have a rise in ASO or Anti-DNAseB

Whereas girls were ~2x more likely to be labeled as "carriers"

 

(see http://www.latitudes.org/forums/index.php?showtopic=9495&st=0&p=79704&fromsearch=1entry79704)

 

I was also wondering if you had been on amoxicillin in your time of elevated titers. Could you provide what antibiotics you tried?

 

Best regards,

 

Buster

 

 

Hi:

 

I need some help understanding this. Since last June, my son (4) has had ASO of 400+ and DNASE in high 900's. He had Strep titers tested June 2010, Sept. 2010, Jan. 2011 and last week, May 2011. He started BID antibiotics last Sept. 2010, which did not seem to make a dent in the titers, in fact, his last DNASE, last Jan., actually went up. Sooo, now, about 4.5 months later, his titers are ASO 105 and DNASE 159. I am not looking a gift horse in the mouth. It is true that his PANDAS symptoms were almost non-existent from last Jan - the end of last March, likely due to starting a diff. ABX called Cefdinir. However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers. Can anyone shed some light upon PANDAS symptoms seeming to return even thought titers have decreased significantly?

[beeskneesmommy]

Thank you Buster.

 

My son was dx with PANDAS at age 2.5, in May, 2009. It is my belief that he had multiple undiagnosed incidents of Strep and PANDAS responses prior to that time. Betw. May 2009 and last Aug., 2010, he had 7 documented pos. Strep cultures, followed by 10 day runs of abx. The Strep was never that evident as the fever and sore throat were often not really bad. However, the sudden onset of bx changes and classic PANDAS symptoms would lead me to the Ped. for the Strep cultures. He was on Ammoxil for 4 of the Strep infections. It was effective for the 1st 2 but did not work well for the 3rd and 4th, as the Strep and symptoms came back within 10-20 days of the the end of the Ammoxil run. Next 2 Strep infections were followed by Cephelexin. This was effective for the first but not as effective for the 2nd, and it came back within 10 days of the end of that run (same as before). Augmentin was used in between the 1st and 3rd documented Strep, mostly due to my request because it came in chewable tablets. This was the antibiotic that seemed to work the best.

 

In Aug. 2010, he had his tonsils and adenoids removed, while infected with Strep, despite my verbalized concerns and request for an antibiotic pre-surgery (doc wouldn't give him one). He was on Cefdinir for 10 days post surgery and then a low dose of Ammoxil daily thereafter, until his acute episode. Within 2 days post surgery, it was evident that more severe PANDAS symptoms were emerging. After 3 weeks he had an overnight acute episode in which he fell apart and was highly symptomatic. I requested Augmentin from his Ped., 600 BID. We got to a specialist at CHOP within another 5 days and she chose to keep him on the Augmentin. He recovered very slowly. All relative but it took about 2 months of roller coaster riding to improve the severe symptoms, then he kind of coasted on a smaller roller coaster with less severe symptoms and occasional runs of days with very little symptomology until Jan. 2011. At that time, his titers showed that the DNASE was higher than it had ever been. We switched to Cefdinir which acted as a magic bullet for about 2.5 months. He was practically asymptomatic, with some slightly difficult days sprinkled in.

 

Starting last April, 2011, he had increased incidents of PANDAS symptoms again, although he was in preschool at the worst time and exposed to multiple viral infections. He recently got sick May 7th, after being exposed to another kiddo for 2 days who was infected with Strep. Culture came back neg., but was done 8 days after the onset due to us being out of town during his illness. Of course, now the titers are way down from last Jan. However, the PANDAS response that he had with this illness was eerily reminiscent of last Fall during his acute episode, although not as severe and now he has bounced back again. Some current hyperactivity and intermittent manageable OCD. It is important to note that about 3 weeks ago I D/Cd the Cefdinir for 2.5 days due to severe stomach problems and that is when the worst of the PANDAS response occurred. After starting again, the symptoms gradually got better. We are going back to CHOP in a week. I am thinking maybe we should try a new antibiotic. The doc will not give us Azithromax. Any suggestions? We are also seeing Dr. Bouboulis in CT in late July for a 2nd opinion.

 

Sorry for the incredibly lengthy note - I guess I feel somewhat "compelled" to make sure I am an accurate reporter and to provide all necessary info in case something jumps out at you, or someone else, and an opportunity for new info may be provided.

 

Nutshell:

Ammoxil, Ammoxil, Augmentin, Ammoxil, Ammoxil, Cephelexen, Cephelexen, Cefdinir (post surgery), Low dose Ammoxil, Augmentin (BID 9/10-1/11), Cefdinir (BID 1/11-present).

 

Thank you, Kath

[KaraM]

Our dd's titers were first tested March 2010 after she had a round of abx. They were slightly elevated. Over the course of the next several months they went down until they were finally in the normal range by the beginning of September. Her OCD improved as well so everything seemed to make sense. However, during the fall she declined and this winter was almost as bad as last year (even though she was still on abx). Her titers remained low though. We thought it might be due to exposure and that may very well have contributed. Before going the IVIG round, Dr. B tested her for a bunch of other infections. She tested positive for Bartonella. The jury is still out on Lyme....

 

My point is, maybe something other than strep is at play...

 

Hi:

 

I need some help understanding this. Since last June, my son (4) has had ASO of 400+ and DNASE in high 900's. He had Strep titers tested June 2010, Sept. 2010, Jan. 2011 and last week, May 2011. He started BID antibiotics last Sept. 2010, which did not seem to make a dent in the titers, in fact, his last DNASE, last Jan., actually went up. Sooo, now, about 4.5 months later, his titers are ASO 105 and DNASE 159. I am not looking a gift horse in the mouth. It is true that his PANDAS symptoms were almost non-existent from last Jan - the end of last March, likely due to starting a diff. ABX called Cefdinir. However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers. Can anyone shed some light upon PANDAS symptoms seeming to return even thought titers have decreased significantly?

[beeskneesmommy]

Thank you KaraM. He just tested + for dog and dustmite allergies, and a a lower level of cat (we have all of those pets :>. Also, he tested with "old" Mycoplasm. After his acute episode of PANDAS last Sept., he had walking pneumonia the following Oct. He took Azith in addition to the Augmentin and the PANDAS cleared better than I had seen it in months. Of course, it was up/down and continues to be, however, overall, in the big pic, he seems to be improving slowly over time. He has been tested for Lyme x 2, but never Bartonella. Thank you for the suggestions! I will have more on my list when we go to CHOP.

 

Incidentally, we are traveling to see Dr. Bouboulis in late July. I think that's who you refer to as Dr. B? Would you recommend him? Is he extremely conservative, or seemingly willing to roll with more aggressive TX (IVig/PEX) even if Strep titers are low now?

 

Thanks for you help -Kath

[smartyjones]

However, recently I have noticed that some of the symptoms, especially during an illness in the beginning of May, were returning. The most recent symptoms were accompanied by a fever and sore throat and I felt sure from my observation of his behavior that he had Strep. Throat culture was neg., and apparently correct if you go my the titers.

 

 

beesknees -- i cannot shed light on your actual question -- but we have had similar experience. ds6 had high titers and positive culture with onset of fairly classic pandas symptoms. he had 100% remission when got on the 'right' abx for him - keflex - but relapsed about 30 days off of it. he had some improvement when back on but not as dramatic and further relapsed with another flu illness. he remained in an 'okay' state but not 100% and with behavioral flairs. his titers have been lower each time they've been tested. with the flu exacerbation, dh was sure he'd test positive for strep -- culture was negative.

 

b/c he seemed in this kind of limbo state, we sought consult for other infections. we see an integratvie MD who does a form of ART testing. he diagnosed multiple other infections. i don't think the pandas diagnosis was 'wrong' but more 'incomplete'. i now believe it should be 'pitand - multiple causes' or MCIS - multiple chronic infection syndrome (i think that's correct). basically, his immune system took a hit somewhere along the line with infection and then was susceptible to other infections. we are treating all infections. i think the strep was the straw that broke the camel's back b/c we saw classic pandas. i don't know which was 'the' troublesome infection or if it's a combo of some/all. we don't see dr b, but i believe he does discuss other infections in addition to strep with patients.

 

also -- through the testing that we do, ds was testing as strep being troublesome for him for quite some time even though titers were falling and cultures were negative. many believe strep can 'hide out' somewhere in the body. ds's titers were falling but were still high -- so if each test was the initial - it would still be a red flag that he had infection, but the falling didn't indicate remission of symptoms.

 

i think titers, if they are high, can be helpful in the beginning in indicating that there has definitely been a strep issue but for judging treatment success are not so helpful.

[beeskneesmommy]

Thank you - I know that it can "hide out" in the intestinal tract and rectal area, neither of which we have tested yet - I guess I thought that if it was "hiding out" we would be able to detect it with titers. I guess it's good news that the titers are decreased (dramatically!), but it also feel more confusing to me. Chop doc had suggested that take him off Cefdinir over the summer, but after taking him off for 2.5 days and seeing the dramatic onset, I fear that plan! Since he was doing great and now is a little more up/down, I wonder if we shouldn't try another ABX.

 

I think one of the hardest areas for me is that he has had PANDAS shaping his personality and behavior for over half of his little life. I see occasional glimpses (sometime even a week long) of the laughing, cooperative, happy child that I know he is, in between bouts of OCD, extreme irritability and other difficult symptoms. I sometimes wonder, is this who he is now? What is pathology and what isn't? Am I pathologizing typical behavior for a 4 year old sometimes? It's very hard to sift thru it all!

[KaraM]

Yes, Dr. Bouboulis is whom I'm referring to. We see him as well and I would recommend him. If you want, we can chat more off line. He is the one who ordered the Lyme and co-infection tests for us. However, when the positive Bartonella came back, he chenged her medication to Zithromax and Bactrim and recommended we see an LLMD (Dr. Jones was his recommendation).

 

We will continue to see Dr. B. as well, at least for now.

 

What type of Lyme test did you do? Did you go through Igenex? Did you do a Western Blot?

 

Thank you KaraM. He just tested + for dog and dustmite allergies, and a a lower level of cat (we have all of those pets :>. Also, he tested with "old" Mycoplasm. After his acute episode of PANDAS last Sept., he had walking pneumonia the following Oct. He took Azith in addition to the Augmentin and the PANDAS cleared better than I had seen it in months. Of course, it was up/down and continues to be, however, overall, in the big pic, he seems to be improving slowly over time. He has been tested for Lyme x 2, but never Bartonella. Thank you for the suggestions! I will have more on my list when we go to CHOP.

 

Incidentally, we are traveling to see Dr. Bouboulis in late July. I think that's who you refer to as Dr. B? Would you recommend him? Is he extremely conservative, or seemingly willing to roll with more aggressive TX (IVig/PEX) even if Strep titers are low now?

 

Thanks for you help -Kath