My SWCAH son is 15 monthe old and is also not even on the charts for height and weight.   Right now he’s almost 28 in. (71cm) and about 181/2 lbs (8.4kg). He wears clothes for a 9-month old and is still sitting rear-facing in his infant carrier.  When he was born he was average and he fell off the chart around at around six monthes. My husband 5’11 and I am 5’5".

I sometimes get the feeling the endo is blaming me for not feeding him more. He really has no appetite and it is very disheartening.  She sent me to the nutritionist about six monthes ago. Since then, I try to maximize his protein and calories in every bite since he’s likely to take only a little.  I think this has helped a bit because he growth was stalled before. He gags on food frequently. I’ve tried Pediasure several times, he thinks it fun to drink out of the straw and then each time he has vomited it back up.  His primary pediatrician, who is a failure to thrive specialist, said that he is small but proportional meaning he doesn’t appear malnourished.  He said his growth rate seems to have been ’reset’ at a much slower pace. Now they want him to be evaluted by a GI specialist. I think the endo is planning growth hormone when he is older because she said he is still too young.

He take 2 mg cortef in early a.m., 1.5 mg afternoon and 1.5 mg at night. He takes 1/2 a florinef in the a.m.  He was VERY oversurpressed in the first four months.  taking over double of what he takes now. Maybe that’s when the growth rate got ’reset’. I agree with momoffour that circadian dosing would help.

Sorry this is so long, like most of the CAH moms here I often feel so alone about my concern about these issues. When my son is measured at the doctors and has only grown a few milimeters the feeling is I’m letting him down.  That I should advocate for him more or force him to eat one more bite or I don’t know what.

Blessings and peace to us all!