Hi Kym. 

My son started out on the lower end of the growth chart- around 5th -10th percentile.  But he has been below the zero percentile for a long time now.  He also did fall below his own curve - this is what concerned everyone. 

He is very thin - needs suspenders to hold his pants up!  He is very short too (below chart for height and weight).  He wears 18 months clothes for his pants, and he is just beginning to fit into some 24 months, but not all.  

He initially tested positive for underactive thyroid.  At a second testing, it tested o.k., but he had slightly elevated thyroid antibodies.  The dr. said this needed to be monitored every four months because they could attack the thyroid gland, causing it to become underactive.  The dr. is also monitoring his growth, and if it is not sufficient, they will measure growth hormone to see if his levels are low. His bone scan showed his bone age to be the same as chronological age (we were hoping bone age would be younger, but no  such luck!!!).

His dr. never mentioned anything about CAH for my son, but did express concern that I may have it.  This is why I am currently being tested (I'm waiting for the results).

I am concerned because I was also very small and thin my whole life, and now there is a good chance that I may be diagnosed.  And I am currently having trouble digesting proteins, fats, sugar.  I can eat all day but do not gain weight.  So I worry that because he seems to be following my growth pattern that he may have it too.  

Does your son (or anyone else's) have underactive thyroid as part of his condition.  Have they measured his growth hormone?  Is it common for kids with CAH to be on growth hormone at some point? 

We are seeing his endo. in a couple of weeks for a follow-up.  Hopefully we will have the results of my testing at that time as well. 

Thanks for any info. you might have. 

Andrea