If ASO titers are low, then what help are antibiotics?

[worriedmommy]

I was explaining PANDAS to a friend. When I got to the part about ASO titers, and explained that my daughter has low titers, my friend asked what good antibiotics are if titers are low? I was stumped. I feel like a complete idiot that I can't answer that question, especially considering the fact that my daughter IS on antibiotics.

[T_Mom]

I was explaining PANDAS to a friend. When I got to the part about ASO titers, and explained that my daughter has low titers, my friend asked what good antibiotics are if titers are low? I was stumped. I feel like a complete idiot that I can't answer that question, especially considering the fact that my daughter IS on antibiotics.

 

 

Worriedm--I can relate!

 

One of the original Pandas researchers, had told us that Amoxicillan had anti-inflammatory effects and that the results would be a decrease in inflammation and thus in Pandas symptoms with this antibiotic.

 

I believe that an important aspect of Pandas is obviously the resulting/triggering inflammation issue, and based on what we have seen, that is why antibiotics are still given in our household too--

 

(ps--after a while you get used to feeling "stumped" when trying to explain to others

Edited April 15, 2010 by T.Mom

[worriedmommy]

(ps--after a while you get used to feeling "stumped" when trying to explain to others

'

That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others.

[ajcire]

Assuming you believe strep to be the trigger despite the low titers I would think the other reason is to try to prevent the strep in the first place. My son has had high titers and is on prophylactic antibiotics right now and the reason I have for him being on them now is preventative. That and from my understanding low titers doesn't rule out strep since many of these kids don't have the rise in titers even with clear strep infections.

 

(ps--after a while you get used to feeling "stumped" when trying to explain to others

'

That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others.

Edited April 15, 2010 by ajcire

[thereishope]

You can bring our the rheumatic fever analogy. Prophylactic antibiocs are used to help prevent strep infection in RF. Granted, it doesn't 100% protect your child, but it lowers the chance of reinfection.

[worriedmommy]

Assuming you believe strep to be the trigger despite the low titers I would think the other reason is to try to prevent the strep in the first place. My son has had high titers and is on prophylactic antibiotics right now and the reason I have for him being on them now is preventative. That and from my understanding low titers doesn't rule out strep since many of these kids don't have the rise in titers even with clear strep infections.

 

(ps--after a while you get used to feeling "stumped" when trying to explain to others

'

That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others.

 

Yes, we do believe strep to be the trigger. My daughter has had multiply positive cultures...mostly peri-anal strep, and 1 case of strep throat, which preceeded the sudden onset of tics. ASO & Anti DNase-B titers were VERY low.

[peglem]

Low titers tell you nothing, rule out nothing, and make everything confusing. High titers confirm a previous, recent (w/in several months) strep infection. But either way, ASO is not the antibody that causes PANDAS, and the abx is not meant to treat the titers.

[worriedmommy]

Assuming you believe strep to be the trigger despite the low titers I would think the other reason is to try to prevent the strep in the first place. My son has had high titers and is on prophylactic antibiotics right now and the reason I have for him being on them now is preventative. That and from my understanding low titers doesn't rule out strep since many of these kids don't have the rise in titers even with clear strep infections.

 

I should also note that dd is not on prophylactic antibiotics at this time.

 

This all started with dd getting strep (peri-anal & throat) in the fall of 2009. Soon after she developed a tic-cough that she'd do 8000-10000 times a day (very much like Lauren Johnson's sneeze tic). We tried a round of abx in Dec and the cough got better,but came back after the 10 day course. Did another round of abx in January and the cough went away completely for 2 weeks. Then in Feb 2010 she had an explosion of motor and vocal tics, at a time when she had 11 confirmed cases of strep throat in her kindergarten classroom. She had throat and peri-anal swabs, which came back negative, and her titers were tested and were low (13). In March her tics were still constant, and we found Dr. T. He had a lot of blood work done. Titers still low (now 29), and she tested negative for mycoplasma. The bloodwork included a Western Lyme Blot (not Igenex) which showed positive IgG & IgM for Band 41 and positive IgG for band 66. This was interpreted as a negative Lyme test by CDC standards. Her blood work also showed low total IgG levels, with subclass 1 & 4 deficiencies. Dr T then put her on a 20 day course of Biaxin, during which she did VERY well and tics decreased dramatically. Behaviors (that we never would have attributed to PANDAS) also got SOOOO much better while on Biaxin. After the course ended, she started to backslide back into more and more tics and behaviors and fears returned. We then tried Motrin alone for a week with very little effect. Now back on azith (started yesterday) for 10 days to see if we see imporvement. We are also going to do a prednisone burst, but have to wait to do the Cunningham test first (which is supposed to arrive today.)

 

I just still find myself struggling to believe that this is really "real" with her. I have heard from Dr. T, Dr. K & Dr. Latimer that high titers don't rule out PANDAS...I just wish there was somethihng conclusive to rule it in or out.

[T_Mom]

Worriedm, these uncertainties in diagnosis are common.

 

Until, time+again we see results, like you apparently have, that OCD and ticcing are diminished by antibiotics/steroids/IVIG and/or PEX ...THEN we believe.

 

What can you say?--Your child got "better" with Pandas treatments--THAT is significant! IMO

 

I find myself stumbling over the details when I try to explain what we have gone through--I think most of us do.

 

I had dinner a few months ago with 3 other Pandas Moms in the area--We noted that if we had not gone through this experience ourselves we would have a difficult time believing someone who had!

 

Nevertheless, I have a d who was entirely crippled and housebound by OCD (+mild tics) who is now symptom free thanks to full strength antibiotics and 2 steroid bursts -- THAT I know!

 

ps--no elevated titers either.

Edited April 15, 2010 by T.Mom

[Suzan]

My dd's do not mount high titers even in the presence of confirmed strep infections. Their titers were low even with long term active vaginal strep so the titers do not necessarily go up even though antibiotics are absolutely necessary!

 

Even now, my dd needs antibiotics to maintain. She goes off the abx and her symptoms reappear.

 

Susan

[sf_mom]

The are 100's of serotypes of strep and many strep experts believe in a superantigen....... With Kawasaki's it share 93 symptoms with RF however there are typically NO positive cultures, NO raised ASO and NO raised Anti-DNAse-B. In one study they found the S. Pyogenes (strep) present on 100% blood agars of the children in the acute phase of Kawasaki's Disease. Its very puzzling to many but it could be as simple as they are measuring for the wrong exotoxin. Kawasaki's has been in the US for 30 years now...... they know how to diagnose, they know how to treat but they can not concretely explain the cause. PANDAS is very similar so don't let the in between trip you up on treatment if its effective for your child. Unfortunately, they may not figure out the exact pathogen in our children's life time.

 

-Wendy

Edited April 16, 2010 by SF Mom

[simplygina]

I was explaining PANDAS to a friend. When I got to the part about ASO titers, and explained that my daughter has low titers, my friend asked what good antibiotics are if titers are low? I was stumped. I feel like a complete idiot that I can't answer that question, especially considering the fact that my daughter IS on antibiotics.

 

My son doesn't seem to have a raise in titers. He's had strep a bajillion times though. I think for some kids either they don't mount an immune response correctly, or it is erratic and difficult to time a titer test to capture the full picture.

[Buster]

Hi WorriedMommy,

 

Some of the antibiotics (notably macrolides) are anti-inflammatory and immuno-modulating. PANDAS is thought to be caused by 3 things:

1. a genetic predisposition to creating an antibody targeting neuronal cells in response to GABHS infection
   
2. a failure of the immune system to suppress the anti-host antibody
   
3. a breech of the blood-brain barrier that allows the antibody to reach neuronal tissue
   

In the case of azithromycin, it appears to shift the Th2->Th1 (extracellular response to intracellular response). In addition, the anti-inflammatory effect may help the BBB (#3).

 

Finally, antibiotics may help reduce the severity of an infection by limiting the rate of spread of an infection -- i.e., it won't stop an infection but can slow it down so the immune system produces fewer anibodies.

 

Titers are largely meaningless. I know doctors like to put more faith in blood tests, but in reality, unless you get the draw at a very specific intervale, the blood test doesn't tell you anything. Titers can confirm a previous strep infection but can't rule it out.

 

A rising titer indicates that there was a strep infection sometime in the last 4 weeks (ASO) or last 6-8 weeks(AntiDNAse . The rate of fall of titers isn't known or studied. A constant titer is similarly without meaning. An elevated titer is sometimes treated as a rising titer, but actually most people don't know.

 

This lack of tight correlation/repeatability of titers with symptoms in some children is what causes some doctors (such as Kurlan) to question the PANDAS findings (particularly the "AS" portion). Swedo, in her studies, selected children who did have such an association so that she could show the repeatable laboratory tests matching clinical symptoms and better isolate what was going on (i.e., the isolation of antibody 24.3.1 and the interference with the dopamine d2 receptor).

 

 

There's more in the FAQ around titers

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

We can extend the FAQ if you have other questions.

 

Buster

 

 

I was explaining PANDAS to a friend. When I got to the part about ASO titers, and explained that my daughter has low titers, my friend asked what good antibiotics are if titers are low? I was stumped. I feel like a complete idiot that I can't answer that question, especially considering the fact that my daughter IS on antibiotics.