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

[CIS-PIDD]

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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