[CIS PIDD] [cis-pidd] XLA and enterovirus

[Richard Wasserman]

Kate,
Negative PCRs. That patient was Diane Wara's who came to me with the
reservoirs in place.
Richard

On Wed, Jun 24, 2015 at 4:00 PM, Sullivan, Kathleen <
SULLIVANK at email.chop.edu> wrote:

>  Rich- was the first patient you described completely cleared?
>
> Kate Sullivan
> Sent from my iPhone
>
> On Jun 24, 2015, at 3:55 PM, Richard Wasserman <drrichwasserman at gmail.com>
> wrote:
>
>    I have cared for two XLA patients with Echo 11 encephalitis. The first
> presented as a child and was treated with intraventricular IgG with an
> Ommaya Reservoir until he developed obstruction and a lumbar reservoir was
> added. This was 30 years ago and he was failing moderate dose IGIV. The
> second presented as an asymptomatic adult and, based on the first
> experience a Reservoir was placed but he had a bleed with the first dose
> and was then treated IV. We were able to clear Echo from the spinal fluid
> in both patients. If I saw such a patient today, I would probably start
> with 1g/kg/w until there was a response. The second patient had done well
> on 500mg/kg every other week and self weaned to every three weeks and
> developed encephalopathy and seizure so we never actually cleared him even
> though he was PCR negative.
>
>  Richard Wasserman
> Dallas
>
> Sent from my iPhone
> Richard L. Wasserman, MD,PhD
> 214 697-7211
>
> On Jun 24, 2015, at 9:40 AM, Gober, Laura M <GOBERL at email.chop.edu> wrote:
>
>   Hello,
>
> I am currently caring for a 4 year-old boy with XLA who over the past year
> has had progressive neurological deterioration including loss of
> developmental milestones (no longer walking/talking).  Suspected etiology
> has been enterovirus but prior testing has been negative (CSF, blood,
> urine).  CSF has had elevated protein.  Has abnormal MIR results showing
> progressive cerebral and cerebellar volume loss, subdural hemorrhages.
>
>
>
> Had a brain biopsy yesterday that finally confirmed Enterovirus.  Besides
> Pocapavir (already exploring this option), has anyone had any other
> treatment strategies.  He has been therapeutic with Hizentra in past but
> has been receiving higher doses of IVIg.  Has anyone used IVIg daily in
> these patients with success?
>
>
>
> And has anyone used Pocapavir in such a patient with chronic infection?
>
>
>
> Thank you!
>
> Laura
>
>  Laura Gober, M.D.
> Attending physician, Division of Allergy and Immunology
> The Children's Hospital of Philadelphia
> phone (215) 590-2549
> fax (215) 590-4529
>
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-- 
Richard L. Wasserman, MD, PhD
Allergy Partners of North Texas
7777 Forest Lane, Suite B-332
Dallas, Texas 75230
Office (972) 566-7788
Fax (972) 566-8837
Cell (214) 697-7211

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