We are also from the Boston area and have a daughter with almost complete
ACC as well as a large interhemispheric cyst (now shunted). We spent 5 days
in the NICU at Boston Children’s when Hazel was born and continue to do all
her followup care there. We have had only good experiences there. Our
Neurologist is Dr. Omar Khwaja and we like him very much.
If you are admitted to the hospital than you must be seeing a fairly large
group of doctors every day on rounds. There should be a neo-neurologist
assigned to your case. There are also case workers, nurse practitioners and
social workers that should be available to your family for help and support.
Ask the nurse assigned to you about getting some support for your family.
In our experience, all the people who work at Childrens from the doctors
to the parking attendants have been nothing but kind, compassionate and
supportive. If you are feeling frustrated, remember that Boston Children’s
is considered one of the foremost centers in the world for research and
treatment of neurologic disorders. Your child is in the best place he could
be to diagnose and treat his ACC and associated issues. I hope everything
works out for you and your son. Good luck!
-Sarah, mama to Hazel (1/30/07) p-acc, macrocephally, shunted
----- Original Message -----
From: “ALLFORJACK” firstname.lastname@example.org
Sent: Sunday, April 27, 2008 10:58 AM
Subject: [agenesiscc] Can someone recommend a Boston-area Neo Neurologist?