New...son may have PANDAS...some questions

[rhyanen]

Update: still waiting on the labs. It has been over 3 weeks now. Jeez, does it usually take that long?

[rhyanen]

UPDATE: We had labs done by our DAN! doctor, and after waiting a month, they are finally in. He tested positive for anti-dNase B but negative for ASO. We didn't have a throat culture done. He also has low Vitamin D. And for the first time ever, his celiac panel(anti-gliadin IgG were negative...weird). The doctor says that the labs don't confirm PANDAS nor does it exclude PANDAS. Any comments would be greatly appreciated. Waiting to hear from his doctor on how to proceed. Thanks!

 

Amy

[peglem]

Is he on a gluten free diet? That could explain the neg. celiac panel. Doc is right that labs cannot deny or confirm PANDAS. PANDAS is a clinical dx and the labs are just part of the picture- symptoms and response to treatment are other indicators to take into account.

[rhyanen]

He was diagnosed with celiac disease at 22 months, so we put him on the gf diet for 6-7 years. He did well, but we couldn't afford it anymore so we slowly allowed him to eat gluten again. Surprisingly, he didn't have any symptoms. Vomiting, diarrhea, lethargy gone. He's been eating it regularly for 3 years now. But this is the first time his celiac panel has been normal despite eating gluten. I'm thoroughly confused! Since his DNAse B titers were high, what is the common protocol? Antibiotics, IVIG? Would symptoms plus positive titer be enough to confirm a diagnosis of Pandas and start treatment?

Edited January 6, 2012 by rhyanen

[peglem]

He was diagnosed with celiac disease at 22 months, so we put him on the gf diet for 6-7 years. He did well, but we couldn't afford it anymore so we slowly allowed him to eat gluten again. Surprisingly, he didn't have any symptoms. Vomiting, diarrhea, lethargy gone. He's been eating it regularly for 3 years now. But this is the first time his celiac panel has been normal despite eating gluten. I'm thoroughly confused! Since his DNAse B titers were high, what is the common protocol? Antibiotics, IVIG? Would symptoms plus positive titer be enough to confirm a diagnosis of Pandas and start treatment?

The only thing high Dnase can tell you is that your child had a past strep infection. If subsequent tests show it is rising, then you may get abx treatment because if the infection has cleared the titer should start to fall. Honestly, there is no standard protocol. Each practitioner uses his/her own judgement. Some docs will figure it is pretty safe to at least try abx for awhile to see if it helps. Some will follow up with prednisone...there just isn't a standard protocol. AntiDnase is not the antibody suspected to cause PANDAS symptoms. Its just a marker for an immune response to strep and it is a normal immune response to strep.