Cleft Lip & Palate Child with Endocrine Problems

[L&J]

Our 3 year old was born with unilateral cleft lip and bilateral cleft palate - both successfully corrected. This November she is scheduled for nasal symmetry correction. At birth she was diagnosed with panhypopituitarism, expected, but not all that common with midline defects such as clefts. She is currently on thyroid medication, hydrocortisol and growth hormone injection. She is thriving well. We wondered if anyone has had any experience with endocrine issues along with the clefts. Thanks for your input.

[angelal@carolina.rr.com]

I am responding to your posting. My son is 18 months old and appears to have problems with his growth. We will be going to an endocrinologist soon to determine if there are any problems. At this point, they suspect pituitary dwarfism, since that is associated with cleft lip and palate in a small percentage of babies with clefts. I am looking for any information which can prepare me for what I may be facing. Thanks.

[L&J]

Our daughter was diagnosed at birth with pituitary dwarfism (also called panhypopituitarism). She is on these three drugs. Growth hormone can be very costly if your insurance plan will not cover, so you may want to do some research after your doctor properly diagnoses. Her growth with these drugs is above average and she is thriving. It was hard for us in the beginning to get acclimated to the daily injections, on top of all of the cleft issues. It gets much easier as time passes. We actually make a little game out of it with her. I have read articles about oral growth hormone, but it does not appear imminent.


What hospital are you using? Please post after your visit. We can share more of what we went through.


Good luck.