CDG Family Network Foundation . As parents of children diagnosed with CDG we share an incredible bond. We are families coping with a disease that most doctors have never heard of. For that reason we look for ways to foster communication among families. We accomplish this task through a variety of ways that include our newsletter, annual family conferences, parent contact list, our internet page and our email listserv.
Diagnosis can be difficult.
Doctors should consider CDG if a child presents with any unexplained delayed development, seizures, strokelike episodes, or has cerebellar hypoplasia. Type Ib presents with a whole different picture, these children have problems with their gastrointestinal tract but are neurologically and intellectually normal. It is our belief many children and adults are not diagnosed and the true number of cases are unknown. I t is important to know that CDG is still extremely rare. Affected families often feel isolated and alone.