I think we are going to Mayo Clinic...

[PowPow]

Here are some tests that were recently checked on my children :

 

c3 c4

Sm,RNP ,Ro,La antibodies (these were specific antibodies were tested based on her positive ANA- speckled pattern)

anti-microsomal thyroid Ab

Angiotension Converting Enzyme

anti-thyroglobulin Ab

Anti-Beta 2 Glycoprotein 1 (igg, igm,iga)

anti-Cardiolipin (igg,igm,iga)

thyroid profile

von willebrand antigen

lupus anticoagulant screen and reflex

sed rate

crp

Maybe that will give some ideas for some specifics to ask for.

[PowPow]

Yea, she had a good work-up. What is ENA?

 

Glad you figured it out!

ENA - those are the antibodies that were checked when her ANA came back positive with a speckled pattern. Extractable Nuclear Antiigens. She was positive for RNP.

 

So if you get a positive ANA= the lab should do further testing based on what the pattern of the postive ANA is; speckled, diffuse, I forget the others

 

Also the anti-phospholipid is significant, per our rheumatologist. It was just checked the second time, to confirm presence and it was still there.

[T_Anna]

I think that PANDAS is a subset of AE, but it doesn't always produce the elevated SED in blood tests etc (if those tests are run at all). These other tests that PowPow listed are specific to "recognized" AE illnesses like Lupus, Hasomoto's Encephalopathy, etc.

 

The real difference is the treatment. AE is generally treated with steroids, LD IVIG and sometimes (when necessary) immune suppressants. It does not focus on the infections, diseases that may have caused the AE and in some cases the infections are not checked for at all.

 

I'm still learning, but this is how I understand the differences.

 

T.Anna

[philamom]

 

Yea, she had a good work-up. What is ENA?

 

Glad you figured it out!

ENA - those are the antibodies that were checked when her ANA came back positive with a speckled pattern. Extractable Nuclear Antiigens. She was positive for RNP.

 

So if you get a positive ANA= the lab should do further testing based on what the pattern of the postive ANA is; speckled, diffuse, I forget the others

 

Also the anti-phospholipid is significant, per our rheumatologist. It was just checked the second time, to confirm presence and it was still there.

 

powpow- in the last two years my daughter +ana has been associated with nucleolar, homogeneous, and speckled. Usually one or two at a time. Last time checked in June she was Homogeneous 1:160 and Speckled 1:160. Lupus Anticoagulant Reglex negative at this time. Has been positive in the past.

Everything else has been negative: B2 Glycoprotein, Cardiolipin screen, SM, RNP, Anti-dsDNA (ds). Her anti-dsdna is positive through quest ana choice lab, but always negative through regular quest and labcorp.

At one time you were seeing a doctor close to my area - still the same? Thanks!

[PowPow]

Pmd you philamom

[JoyBop]

Our doctor explained that encephalitis is when the brain swells but it happens all over and not in just one small calculated area. It could certainly swell anywhere, but LANDAS is unique in that the nasal ganglia is targeted. I think PANDAS could be one subtype of autoimmune encephalitis but I'm not sure it's classified that way since its not been proven one way or another. I would love to hear what anyone else knows about this relationship.