[CIS PIDD] [cis-pidd] Norovirus gastroenteritis with CVID

Wed Mar 16 11:45:46 EDT 2016

Thank you  for your input !
I think we have enough number of cases that we can have a Case Series of Norovirus Infection in PID.

Please respond back to me if you would be interested in  contributing your cases and writing this up .
I will then send an abstraction form to fill in de-identified info.

Thank you,
Avni

From: CIS-PIDD [mailto:cis-pidd at lists.clinimmsoc.org]
Sent: Wednesday, March 16, 2016 8:42 AM
To: CIS-PIDD
Subject: RE:[cis-pidd] Norovirus gastroenteritis with CVID

Dear Avni,

I have a 16yo CVID patient who has had chronic norovirus enteritis for 2 years. The case was posted on the listserv previously, and there were several good suggestions esp from the UK folks.

These are what we have tried and failed for our patient:

-       Oral IgG x2days via NG tube

-       Oral IgG x1week via ND tube

-       VSL#3 probiotic 6-9 capsules/day

-       Nitazoxanide, discontinued after 3 months due to severe vit K deficiency (likely due to altered gut flora) leading to spontaneous bleeding and PT/PTT >100. Also presenting with severe malnutrition and vitamin/mineral deficiency.

-       Ribavirin, discontinued after 4 months due to new onset of neutropenia (ANC 70-300) occurring during the 4th month of therapy

-       Switching around between SCIG weekly and twice weekly, to the point that the child refused SCIG. Now receiving IVIG q 2 weeks (could not maintain IgG trough above 800 mg/dL with monthly infusion)

-       FFP infusion (out of desperation) every 2 weeks for 2 months

What seems to help:

-       Dairy avoidance (less diarrhea 2-3 times/day, compared to 4-5 times/day previously)

-       Elemental formula supplement (Elecare) 3 times daily (maintaining weight)

We have discussed parenteral nutrition option with parents, and also HSCT option as now his presentation is more like a CID than CVID, due to persistent marked lymphopenia (CD4 50-100).

Our search continues as well.......

Panida

Panida Sriaroon, MD
Associate Professor
Associate Director, Fellowship Program
Associate Director, USF/All Children's Hospital Allergy/Immunology clinic
Beeper 727.825.4379
Office 727.553.3521
E-mail:psriaroo at health.usf.edu

From: CIS-PIDD [mailto:cis-pidd at lists.clinimmsoc.org]
Sent: Tuesday, March 15, 2016 5:40 PM
To: CIS-PIDD
Cc: El-Youssef, Mounif, M.D.
Subject: [cis-pidd] Norovirus gastroenteritis with CVID

Dear all,
We are seeking help with a CVID( with nodular regenerative hyperplasia, portal hypertension)  patient with recurrent norovirus gastroenteritis.

He did clear the infection with oral IVIG , but has recurrence after 2.5 months of therapy.
He was on ribavirin( 400mg BID)  for  1 year prior to seeing us, which we discontinued as his liver dysfunction and the use of ribavirin did seem to coincide.

Does anyone have experience with using any other modality for treating norovirus gastroenteritis?

Thank you,

Avni Joshi
Mayo Clinic
Rochester MN
Joshi.avni at mayo.edu<mailto:Joshi.avni at mayo.edu>

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