when should i push for an endo referrel?

[Rachelinpain]

my daughter is 3 and has always been small.  she is adopted and mother is average height but father is unknown.  she was born full term at 5 pounds and we have been through every GI test known with nothing but a diagnosis of chronic constipation and GERD.  she is followed by GI every 3 months and i have had her on a super calorie, high fat diet.  the last few visits she has gained about 100-300 grams in between.  she is now about 23 pounds and 33 inches which puts her in 3rd percentile i think. she also had some motor delays (never crawled, did not walk until 15 months) and the therapist told us she was hypertonic, especially in her legs.   when she was referred to the GI doctor she had gone from 5th to below the 3rd.  my question is should i push for an endocrine referrel or should i just wait?  GI  doctor seems to want to wait but still keeps reminding may that we may have to do a feeding tube if she continues to not gain weight.  i do not want to miss something that could be fixed.  thnaks

[Deanna L Aftab Guy, MD]

Ask your pediatrician to do at least a bone age, if it is delayed you know she has room to grow and needs monitored, also the igf-1 level and considering a karyotype(genetic test) which is also a blood test may help your pediatrician decide about watching or referring, I would push for a little more aggressive monitoring and or workup and then with a little more evidence they might decide about need for referral.

[Rachelinpain]

she has never had genetic testing, IGF, GH or bone age.  most of her workup has been gi in nature although she has had thyroid test which was normal.  she was born in the US and has been with us since birth.  she did have severe reflux and respiratory problems as an infant but managed to gain weight dispite all the vomiting.  i was feeding her extra to make up for all the lost calories.  her reflux is under control currently.  she does not have a huge appetite but seems to eat ok (at least some of the time) . i guess my question is should i push for the next step which i see as a visit to a peds endo or is it safe to just wait and see.  thanks.  

[Deanna L Aftab Guy, MD]

I too have an adopted daughter and understand as I treat many many adopted children and we have half the information to help us, parent's heights are very helpful since we need to know the target height. Where was she born? There are actually growth curves for China, Korea and Russia that we can find that help, our growth curve is based in US children. Then the nutritional thing is really key, it sounds like she is petite but proportionate. If all the tests have ruled out thyroid, celiac, and she has no anemia, kidney, renal disease and she has no genetic testing revealing Turner Syndrome then following her is fine with your pediatrician. Also they may want to get a somatomedin C or what is called igf-1. This is a hormone the liver makes in response to growth hormone, but in underweight kids this is low too, hard to tell what the reason is-nutrition or gh deficiency! A bone age will help, in a 3 year old this may also need to be done on the knee and read by someone who is a pediatric radiologist, it tells us her bones are delayed or if they are not, this give an idea of room for growth.
hope this helps