[CIS-PAGID] deficiency in terminal complement components

[Jack Bleesing]

A caveat alright. Same problem with medical alert bracelets.

Perhaps time for something more 21st century: QRCs, or quick response
codes. The "emergency letter" of the immediate future (in "internet
time-units")? Could include not only medical info, but links to
pharmacies (to reduce running out of meds), etc (you get the idea).

http://newsok.com/edmond-company-creates-quick-response-codes-for-medical-information/article/3627430

http://www.scanmedqr.com/Coming_Soon

QRCs seem - relatively - easy to make, using any QCR code generator
available on-line.  See attached that I made in about 5 minutes. You
scan it with your smartphone QRC scanner app. 

J

---------------------------------------------------------------------------
Jack J.H. Bleesing, M.D., Ph.D.
Associate Professor of Pediatrics
Cincinnati Children's Hospital Medical Center
Division of Bone Marrow Transplantation & Immune Deficiency
3333 Burnet Avenue, MLC 7015
Cincinnati, OH 45229
513-636-4266 (phone)
513-636-3549 (fax)
Jack.Bleesing at CCHMC.org
http://www.cincinnatichildrens.org/immunodeficiencies/

>>> "Ochs, Hans"  12/02/11 8:39 PM >>>

We use a similar protocol for late C-component deficiencies
A caveat is the tendency of these patients, after several years of being
asymptomatic, to become complacent and either loose the "emergency
letter" or run out of meds.
hans

Hans D. Ochs, MD, Dr. med
Professor of Pediatrics | Jeffrey Modell Chair of Pediatric Immunology
Research
Center for Immunity and Immunotherapies
Seattle Children's Research Institute | University of Washington 

206-987-7450 OFFICE
206-987-7310  FAX
allgau at u.washington.edu, hans.ochs at seattlechildrens.org

OFFICE   1900 Ninth Avenue, Seattle, WA 98101 
MAIL      M/S C9S-7
WWW     seattlechildrens.org

Assistant:
Dawn Marie Pares
206-884-7418   OFFICE
dawnmarie.pares at seattlechildrens.org


-----Original Message-----
From: pagid-bounces at list.clinimmsoc.org
[mailto:pagid-bounces at list.clinimmsoc.org] On Behalf Of Nicholas Rider
Sent: Thursday, December 01, 2011 3:30 AM
To: pagid at list.clinimmsoc.org
Subject: Re: [CIS-PAGID] deficiency in terminal complement components

Dear Philipp,

Greetings!  We follow a group of patients with Properdin Deficiency. 
They are Mennonite missionaries and as such far from medical care on a
routine basis.  We do testing on infants (genetic and if needed AH50). 
We recommend that all affected individuals carry disease identification
(wallet card, bracelet, necklace, etc.) and recommend vaccination every
3-5  years against meningococcus (MCV4/Menactra), Hib and Pneumococcus. 
Patients have azithromycin and levofloxacin on hand for illnesses.  They
don't take prophylactic antibiotics, but begin azithromycin for any
upper respiratory tract illnesses/low grade fevers and levofloxacin
immediately for more severe illnesses.  They are encouraged to seek
medical attention for ALL illnesses requiring antimicrobial therapy. 
They all carry an emergency letter for ER encounters/acute illness
presentation.  

We are in the process of completing a longitudinal study of outcome in
these patients and expect data completion early in 2012.  It appears
that there have been no deaths over a 6 year period because of early
detection and preemptive antibiotic therapy/proactive vaccine
strategies.  I will keep the community updated.

Sincerely,

Nick

Nicholas L. Rider, D.O.
Clinic for Special Children
535 Bunker Hill Road
Strasburg, PA 17579
Ph:  717-687-9407
Fx:   717-687-9237
nrider at clinicforspecialchildren.org

Medical Arts Allergy
220 Wilson Street
Carlisle, PA 

On Dec 1, 2011, at 6:08 AM, Philipp Henneke wrote:


> We have recently diagnosed a patient with recurrent meningococcal

meningitis to be deficient in terminal complement components.

> My question: What is the experience with antibiotic prophylaxis versus

preemptive treatment when non specific symptoms of infection occur?

> Philipp Henneke

> 

> Prof. Dr. med. Philipp Henneke

> 

> UNIVERS

ITÄTSKLINIKUM FREIBURG

> Centrum für Chronische Immundefizienz (CCI)

> Zentrum für Kinder- und Jugendmedizin

> 

> Tel Sekretariat 0761 270-77640

> Tel mobil 0162 285 2481

> Fax 0761 270 77600

> Breisacherstr. 117-2.OG, 79106 Freiburg

> philipp.henneke at uniklinik-freiburg.de

> http://www.cci.uniklinik-freiburg.de

> 

> 

> 




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