I’ve been talking a lot recently with other parent of children with CDC, and the overwhelming theme I’m hearing is “my doctor doesn’t know anything helpful.” Several children of the parents I’ve talked to have gone undiagnosed, or misdiagnosed - including my daughter. I would love to brainstorm any ideas of how to get what we know as parents into the hands of the doctors. I’m realizing that the doctors are working off of information from studies that are 20 or more years old. Any ideas?
Hi,
You seem to be having a torrid time of it. Maybe here in the UK doctors are less arrogant? As we have had no problem at all with ours. Nothing but good advice. If you want to provide any medical profession with information on the syndrome we have a booklet that can be downloaded from our website:
It provides a lot of information regarding the syndrome and treatments etc.
Hope this helps
Damian