Elevated Anti-DNAS B but falling ASO Titers - What does this mean?

[kthomas]

Dr. I in San Antonio called reporting DS 7 anti-dnase results as 191 with reference range of 0 - 70. However the ASO titers were 60. His ASO titers have been falling since first tested in February. They have gone from 125 on 2/10; 76 on 3/16; and 60 on 7/13. Why would the Anti D be elevated and the ASO titers falling?

 

DS 7 has never been officially dx with PANDAS because of lack of definitive strep test result despite having many of the other symptoms: sudden onset of tic, accelerated ADHD behavior, urinary frequency x 4 separate episodes, sleep disturbances, etc. We were waiting for the results of the Cunningham test to review PANDAS dx with Dr. I. , but now will not get results as the study has been canceled. I am really worried about the approaching school year and feel that medication for ADHD behavior will be necessary for son's success.

[MomWithOCDSon]

The AntiDnase reflects a longer temporal connection to strep exposure; I believe it's in the realm of 4 to 6 weeks, as opposed to the 2-4 week window for the ASO. So, presumably, the ASO will fall before the AntiDnase falls, and, in fact, the AntiDnase may rise as the window of exposure extends further out.

 

Of course, since PANDAS is an auto-immune DISorder, it's probably possible, too, that your DS's system doesn't know when to stop producing the antibodies, so the AntiDnase continues to rise, long after that 4-6 week window. That's what appears to have happened with our DS.

 

I don't know all the science behind it, but that's my take on it. Perhaps someone with more "science muscle" will chime in.

[kthomas]

The AntiDnase reflects a longer temporal connection to strep exposure; I believe it's in the realm of 4 to 6 weeks, as opposed to the 2-4 week window for the ASO. So, presumably, the ASO will fall before the AntiDnase falls, and, in fact, the AntiDnase may rise as the window of exposure extends further out.

 

Of course, since PANDAS is an auto-immune DISorder, it's probably possible, too, that your DS's system doesn't know when to stop producing the antibodies, so the AntiDnase continues to rise, long after that 4-6 week window. That's what appears to have happened with our DS.

 

I don't know all the science behind it, but that's my take on it. Perhaps someone with more "science muscle" will chime in.

 

 

DS 7 sudden onset of tic started in November when he was exposed to strep. Why would the level of AntiDnase be elevated now?

 

[peglem]

Can you be sure there has been no strep exposure since November?

At any rate, ASO and AntiDnase titers seem to vary widely from person to person, so I think its hard to draw any reliable conclusions.

[MomWithOCDSon]

 

DS 7 sudden onset of tic started in November when he was exposed to strep. Why would the level of AntiDnase be elevated now?

 

I can think of two possibilities, but they're just theories. 1 - He has an auto-immune illness so his immune system doesn't know when enough is enough; so he just keeps on producing those antibodies, causing the AntiDnase to continue to rise because it's the one with the longest/latest temporal window. 2 - He's been re-exposed to strep, didn't actually catch it (assuming he's not classically asymptomatic for it . . . some kids are), but the mere exposure cause his body to go into "alert" mode and start reproducing those antigens again. Our ped has told us that, even during use of prophylactic abx, it's possible for mere exposure to cause a rise in titers, even though the abx will prevent "catching" of an active infection.

[kthomas]

Fast forward to six weeks into the school year and DS7's behavior is off the charts. After the first week his teacher complained that he is out of control and needed meds. We started the meds - Intuniv 1mg, but he was inattentive, still impulsive and having problems with peers. I knew that Intuniv raised glutamate levels and could cause agression in ADHD children so I called the doctor and she changed his meds to Risperdal .25 mg, 2x daily. It is still not working. Tonight at Open House she was still concerned that he was not doing well and perhaps had been doing better on Intuniv. The couple of days I took him off meds to change him to the new meds, he was swinging from the chandeliers. I am heartbroken that he is struggling so much at school and that he is alienating the rest of the kids in the class. I have started looking up doctors in Texas hoping to find someone that will recognize that he has PANDAS and treat it properly. Any ideas???

 

We have tried gluten free and dairy free diet - helps with congestion, but not behavior.

We are currently starting supplements as per Dr. Beck's book.

 

 

[MomWithOCDSon]

Fast forward to six weeks into the school year and DS7's behavior is off the charts. After the first week his teacher complained that he is out of control and needed meds. We started the meds - Intuniv 1mg, but he was inattentive, still impulsive and having problems with peers. I knew that Intuniv raised glutamate levels and could cause agression in ADHD children so I called the doctor and she changed his meds to Risperdal .25 mg, 2x daily. It is still not working. Tonight at Open House she was still concerned that he was not doing well and perhaps had been doing better on Intuniv. The couple of days I took him off meds to change him to the new meds, he was swinging from the chandeliers. I am heartbroken that he is struggling so much at school and that he is alienating the rest of the kids in the class. I have started looking up doctors in Texas hoping to find someone that will recognize that he has PANDAS and treat it properly. Any ideas???

 

We have tried gluten free and dairy free diet - helps with congestion, but not behavior.

We are currently starting supplements as per Dr. Beck's book.

 

I know my DS was constantly exposed to strep in grade school, and second grade was especially bad for him, for some reason.

 

I can only tell you that, even though we too have tried pretty much every psych med on the market (including Intuniv and Risperdal), my DS's behavior did not begin to improve substantively until abx, and even with that, we had to keep him on the abx for an extended period. I honestly don't know what the long-term abx are doing. Are they getting at "hidden" or "intracellular" strep? Or at strep protected by a biofilm? Are they helping calm and mediate the immune system overally so that it ceases the excessive antibody production? Are they modulating glutamate and calming inflammation? Are they somehow making it possible for DS's blood brain barrier to close again, thereby preventing a continuing onslaught of antibodies? Beats me. But what I do know is that Intuniv didn't "fix" his trouble with focus, and Risperadal just made him sonambulent; but with a steady use of abx, his focus, his mood, his behavior all have improved dramatically.

 

I can't remember your full history, but can you go back and try abx again? Different abx? Higher dose?