The CGD Café

Hello,

I just wanted to update on Domenic's medications. He recently got over his long going pnuemonia. (9 months of ups and downs).He was put on Noxafil (posaconazole) and it has been really working good on knocking down a fungal infection. Before that he had a pic line in for three months three two hour doses a day of two meds. Meropenem and Vancomycin. This did the trick on his pnuemonia and with the posacoazole following it up since removing the pic line he really looks good.

It wasn't to annoying for him to have the pic line in he pretty much used it as a show and tell and I believe he educated a lot of people about CGD. What he wasn't to pleased with was the once a week drawing of blood to check his liver function which would dictate the doses for the week. We had a delivery every week of each medicine and would vary according to his liver functions.

Medicine list    Posaconazole(antifungal),Previcid(ant-acid),Pentasa(for irritable bowels),Cefzil(daily antibiotic),Actimune(interferon-gamma),Periactine(appetite stimulant),Prednisolone(steroid)

He will be 8 in March, He is happy, funny,smart, and o yeah soo adorable. He is loving his pirate ship playground granted by Make A Wish in our backyard and is my hero.

Prayers for everyone Happy Holidays