come in auntie, if you have time

blueonblack

Hi, auntie.  I had a question for you relating to an answer you gave about hypotonia in the thread about the CST but I didn't want to completely thread-jack. 

My daughter was born with some sort of unknown genetic condition.  She is hypotonic and delayed in fine and gross motor skills (at 11 months she is just now able to sit but can't get herself to the position, isn't crawling, no pincer grasp, etc). She sees a PT once a week and a ST for feeding issues once a month through our EI (OT just got written into her updated IFSP as well).  She also has PT and OT once a week through outpatient services at our hospital.  

 She has seen a neurologist for torticollus but it was months ago, before the delays were really evident and no one had told me she was low tone yet.

 My question is does she need to be seen again by the neurologist or do I need to find a developmental pediatrician?  There are no dev pedis in my town but I am fine with driving a distance if it would be of help.  I don't have any idea what they really do and if it could benefit us beyond the services we already have.

Thank you.  I have learned a lot from you by reading this board and at gbcn and I appreciate it so much.

blueonblack

I've had issues (I feel) with the pedi not telling me about services (for example, I didn't know EI through the state existed until my dh's cousin randomly mentioned it).  So I don't know what she thinks.  But I am going to pursue an appointment with a developmental pediatrician because what you describe is what I feel is missing in our medical team.  A central person---general  contractor---to put the pieces of our services together.  Thank you again!