Although most general practice pediatricians are not familiar with HIE, you usually need one to coordinate care, especially if you have an HMO. Find one who is willing to learn about HIE and willing to listen to what you have to say. You will become the expert and your pediatrician should respect that. Open communication is important.
In our case we decided to have a meeting with the pediatric nurse who visited from hospice, the social worker, the pediatrician, and myself to discuss my feelings about Rachel’s care. It was helpful to have everyone on the same page concerning my expectations for her care.
Pediatric Neurologist
A neurologist will probably seem like your primary doctor. With some insurance programs, he/she may even be the primary provider. The neurologist deals with matters of the brain, epilepsy, developmental delays, cerebral palsy, microcephaly, etc. From the HemiKids site, this is a place to peruse answers to other parent’s questions to a pediatric neurologist. It seems that you would have to email the HemiKids site directly to ask a new question: http://www.hemikids.org/experts.htm .
This site provides a listing of neurologist and neurosurgeons for every state: http://www.cyberonics.com/usa042700.htm
Neonatologist
A neonatologist specializes in newborn babies with problems and practice in the NICU. This is the doctor that you will deal with once your baby is born, if the brain damage occurs at birth. This doctor will possibly give prognosis for your baby and call in specialty doctors to consult such as a GI doctor and a pediatric neurologist. This will be the first doctor to help you coordinate care.
Developmental Pediatrician
These doctors are specialists in growth and development. The doctor is usually part of a team that can include a speech language therapist, occupational therapist, and physical therapist. They track the child’s development, can give you a developmental age, and provide services, if necessary. Even if you receive services through another program, a second opinion can be helpful at times.
Gastroenterologist
A gastroenterologist handles feeding and reflux. If your child cannot eat orally, this is the doctor who will deal with matters of the gastrostomy tube. He or she also works with GERD including decisions on surgical solutions. This doctor prescribes meds to deal with the reflux, although your primary care pediatrician can also prescribe these.
