[CIS PIDD] [cis-pidd] Advise for the management of a CGD patient

Tue Sep 29 02:55:59 EDT 2015

Dear Guisela, while waiting for the decision to perform an HSCT (I'd not recommend you any HSCT other than MSD or 9 or 10/10 URD), if the patient is doing well I'd put the patient on itraconazole and cotrimoxazole prophylaxis to prevent serious bacterial and fungal infection if possible. 

P. 

Pere Soler Palacín, MD, PhD. 
Pediatric Infectious Diseases and Immunodeficiencies Unit. Hospital Universitari Vall d'He bron. 
Vall d'Hebron Research Institute (VHIR) 
Assistant Professor. Universitat Autònoma de Barcelona (UAB) 
Pg. de la Vall d'Hebron, 119-129 
08035 Barcelona. Spain. 
Tel. 0034934893140 / Fax 0034934893039 

psoler at vhebron.net / 34660psp at comb.cat 
Web: www.upiip.com 
ORCID ID: http://orcid.org/0000-0002-0346-5570 
Scopus Author ID: http://www.scopus.com/authid/detail.url?authorId=55923378300 
ResearchGate: http://www.researchgate.net/profile/Pere_Soler-Palacin 
Linked In : http://es.linkedin.com/pub/pere-soler-palac%C3%ADn/73/918/b16 

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De: "CIS-PIDD" <cis-pidd at lists.clinimmsoc.org> 
Per: "CIS-PIDD" <cis-pidd at lyris.dundee.net> 
Enviats: Dimarts, 29 de Setembre 2015 6:23:57 
Assumpte: [cis-pidd] Advise for the management of a CGD patient 

Good evening everybody. 

In this opportunity, I would like your advice about the management of a patient I am following. 

He is a 2 year old Peruvian patient, diagnosed with CGD at the beginning of this year. He presented his first severe infection this January: left foot osteomyielitis, positive for Serratia marcescens. He has a positive DHR assay (NOI = 1) and her mother´s compatible with a carrier state. No genetic tests have been performed (we don´t have them). 

After that episode, he has been well, with Azytromicin and Fluconazol prophylaxis, until 1 week ago, where he was admitted due to a fever of unknown origin. 

He has no siblings. His parents are very young (21 and 26 years old) but very responsible and committed. They are extremely poor (worry about their living conditions). 

Our main difficulty is that he has no matched related donor (no siblings), and for him to enter the programme of international donor search will take around 3 years (insurance policy burocracy). We are afraid that he could have a serious infection during that time and that his dad could loose the insurance (he is really trying to maintain his job right now). 

So my questions or plea for help are as follows: 

1) Would you advise us to do, right now, a haploidentical transplant? (we have already done HLA studies, his dad will be the donour) or to better wait and try to do an unrelated matched one? 

2) I´m worried about our country´s experience (really none), is there a place with better experience in haploidentical transplants? 

3) Is there any place that could help us doing first the search for a matched donor and then the transplant? 

Thank you for your time. 

Looking forward for your suggestions. 

Sincerely 

Guisela Alva Lozada 

Allergy and Immunology Fellow 

Hospital Edgardo Rebagliati Martins 

Lima - Peru 

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