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

[CIS-PIDD]

*Dear Dr. Pere Soler and Dr. Lour*des Tricas

Thank you for your input. Definetely will considerate both suggestions.

Sincerely

Guisela Alva Lozada

2015-10-02 9:40 GMT-05:00 CIS-PIDD <cis-pidd at lists.clinimmsoc.org>:

> Dear Guisela,
>
> First, I would do a genetic test to verify the diagnosis. If the mother is
> a carrier the gene encoding gp91phox will have a mutation. Related to the
> transplant I would  read the paper British Journal of Haematology, 2009;
> 145:73-83.
> Best regards,
>
> Lourdes Tricas
>  Immunology Department, Hospital Universitario Central de Asturias,
> Oviedo, Spain
> lourdes.tricas at sespa.es
>
>
> ------------------------------
> *De: *"CIS-PIDD" <cis-pidd at lists.clinimmsoc.org>
> *Para: *"CIS-PIDD" <cis-pidd at lyris.dundee.net>
> *Enviados: *Martes, 29 de Septiembre 2015 6:23:57
> *Asunto: *[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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