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Posted

Hi,

I am hoping to get help with some results that came back. I am wondering if I should put the PANDAS diagnoses to rest, but I have read that tests don't always show what we think we are looking for.

Basically my son's pediatrician ran a rapid strep=negative, a strep culture=negative, and a "mini" immune screen. All that I can see that relates to strep is

Streptozyme which came back "Negative." , and Antistreptolysin 0 Ab which showed <5.0. Are the these the strep titers? Also one area came up high which was EOS.

 

Any help on interpretation would be appreciated, did I get the right tests? Should I go farther with testing?

 

thank you for your help with this,

Lilyma

Posted
Hi,

I am hoping to get help with some results that came back. I am wondering if I should put the PANDAS diagnoses to rest, but I have read that tests don't always show what we think we are looking for.

Basically my son's pediatrician ran a rapid strep=negative, a strep culture=negative, and a "mini" immune screen. All that I can see that relates to strep is

Streptozyme which came back "Negative." , and Antistreptolysin 0 Ab which showed <5.0. Are the these the strep titers? Also one area came up high which was EOS.

 

Any help on interpretation would be appreciated, did I get the right tests? Should I go farther with testing?

 

thank you for your help with this,

Lilyma

 

Hi Lilyma --

 

I'm no expert on the diagnostics test list, as we've not had many of the tests conducted that other families go through . . . yet. There're several threads here listing the immune testing that is typical for PANDAS, so you might try scrolling through the forum for those; if I were more adept, I'd post a link, but I haven't gotten that down yet!

 

Anyway, throat cultures are notorious for resulting in false negatives, primarily because they're not always taken properly (there's a thread on this here, as well!). Also, our experience with my DS12 has been that he has ALWAYS been entirely asymptomatic with strep, so throat cultures never came back positive for him at all.

 

I'm not familar with the blood tests you cited above, but I can tell you that the blood tests we sought, on the advice of Beth Maloney of "Saving Sammy" were ASO Titers and AntiDnase. Folks will argue that all these tests do is confirm whether or not there's been recent exposure to strep . . . that they don't really confirm that strep or immune issues are in the mix . . . and I'm sure they're right. That being said, the fact that my DS12's ASO titers came back at about 4 times the normal range ("normal" depends on the lab, but typically tops out at about 200) was sufficient for our pediatrician to agree to abx treatment, and that was what we were after at that point.

 

Whichever route you go, don't take "no" for an answer if your gut is telling you PANDAS is something you need to explore.

Posted

Antistreptolysin 0 Ab- this is the ASO titer. I have never, ever seen one that low. Not sure what it means to have that so low. I'd be curious what your child's total IgG, IgG subclasses, IgA and IgM are.

 

EOS- eosinophils: a kind of white blood cell. Here's a wikipedia link- not the best source for solid info, but a brief explanation that can point you toward more explicit sources. http://en.wikipedia.org/wiki/Eosinophil

 

Don't know how high the EOS was- but that is a sign of some kind of infection.

Posted
Hi,

I am hoping to get help with some results that came back. I am wondering if I should put the PANDAS diagnoses to rest, but I have read that tests don't always show what we think we are looking for.

Basically my son's pediatrician ran a rapid strep=negative, a strep culture=negative, and a "mini" immune screen. All that I can see that relates to strep is

Streptozyme which came back "Negative." , and Antistreptolysin 0 Ab which showed <5.0. Are the these the strep titers? Also one area came up high which was EOS.

 

Any help on interpretation would be appreciated, did I get the right tests? Should I go farther with testing?

 

thank you for your help with this,

Lilyma

 

Hi Lilyma --

 

I'm no expert on the diagnostics test list, as we've not had many of the tests conducted that other families go through . . . yet. There're several threads here listing the immune testing that is typical for PANDAS, so you might try scrolling through the forum for those; if I were more adept, I'd post a link, but I haven't gotten that down yet!

 

Anyway, throat cultures are notorious for resulting in false negatives, primarily because they're not always taken properly (there's a thread on this here, as well!). Also, our experience with my DS12 has been that he has ALWAYS been entirely asymptomatic with strep, so throat cultures never came back positive for him at all.

 

I'm not familar with the blood tests you cited above, but I can tell you that the blood tests we sought, on the advice of Beth Maloney of "Saving Sammy" were ASO Titers and AntiDnase. Folks will argue that all these tests do is confirm whether or not there's been recent exposure to strep . . . that they don't really confirm that strep or immune issues are in the mix . . . and I'm sure they're right. That being said, the fact that my DS12's ASO titers came back at about 4 times the normal range ("normal" depends on the lab, but typically tops out at about 200) was sufficient for our pediatrician to agree to abx treatment, and that was what we were after at that point.

 

Whichever route you go, don't take "no" for an answer if your gut is telling you PANDAS is something you need to explore.

Thank you for your encouragement. I am discouraged because after the tests came back, the psychiatrist wants to put my son on ORAP and I do not think he fits the full criteria to diagnos TS. I just want to explore this to the fullest. I'm always trying to figure out the next step lately...it will hopefully pay off. Thanks again for your response.

Posted
Antistreptolysin 0 Ab- this is the ASO titer. I have never, ever seen one that low. Not sure what it means to have that so low. I'd be curious what your child's total IgG, IgG subclasses, IgA and IgM are.

 

EOS- eosinophils: a kind of white blood cell. Here's a wikipedia link- not the best source for solid info, but a brief explanation that can point you toward more explicit sources. http://en.wikipedia.org/wiki/Eosinophil

 

Don't know how high the EOS was- but that is a sign of some kind of infection.

 

Hi Peglem,

Thanks for the information. So, are the tests you mentioned above tests that I need to ask for by name? What are those, tests covering the immune system? I wonder if I got those and don't know it because I can't read the lab reports. I don't have any doctors in the area familiar enough with PANDAS, so they are testing for what I am asking to look for . I will look through some posts and try to figure out what to ask for next.

 

I was suspicious of the EOS also, it actually has been "flagged" on the report because it fell into a high range. The doctor never mentioned it, I only saw it because I got a copy of the report. Thank you again for your help.

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