The CGD Café

Hello everyone,

I have been reading through the blogs and forums and soaking up all of the advice and info.  Joey, my son who will be 2 in August.  He was diagnosed with x-linked CGD at 17 months.  He had a skin abscess on his left leg that would not heal--the organism was seratia marscens.  Joey is being treated at children's memorial Hospital in Chicago. It has been 6 months now and joey has had no further infections.  He is currently on bactrim twice a day, sporanox once a day and actimmune 3 times a week.  All of the doctors that we have spoken with have told him to treat him like he is a normal kid---let him do all of the normal kid things (except to stay away from gardening).  So i have been keeping to this motto---however, after reading some of the blogs i have become concerned.  He has been playing in wood-chip playgrounds and going to the beach by lake michigan.  I read the fungi restriction guide posted on the site.  What is anyone's opinion on treating our children with CGD like other healthy children?   Should i be a little more paranoid for the health of my child?  Ultimately i believe my child is in God's hands but i do want to make strides to prevent infection.