Frequently asked questions

Do children continue to follow up with their physicians in their hometowns?

Yes, we ask that our patients continue to have regular check-ups with their pediatricians, pediatric pulmonologists, and any other local specialists the child sees.  We may ask that other specialists become involve in a child’s care as well.

How frequently should children be evaluated?

Are parents allowed to stay with their child during the evaluation?

Is it possible that children who have died from sudden unexpected death of childhood (SUDC) may have had CCHS?

Should all parents of a child with CCHS have PHOX2B testing?

Is it possible that babies who died from SIDS might have had CCHS?

If my child has CCHS will her/his babies have CCHS?