My daughter is 20 months old and was diagnosed with CDT on day 5 as part of the heel prickly test. A nuclear medicine scan confirmed total absence of any thyroid tissue. She had other cardiac and craniofacial issues so far her medical team is prioritising those. She is on 50 micrograms of Levothyroxine a day and has paediatric endocrinologist appointments and blood tests every 2-3 months.
However I am worried sick as she has delayed speech and global development delay. Her medical team want to check for autistic spectrum ASD when she is 3 years old.
Anyone with kids with CHT or adults here who can share their experiences...please let me know.