Sickle Cell Neurodevelopmental Clinic | Kennedy Krieger Institute

Sickle-cell disease is a genetic
disorder of red blood cells. The red blood cells in the body aren’t
able to properly adapt to certain stressors in life such as cold
temperatures, illness or injury or other stressors. The most common symptom of
sickle cell disease is something called a vessel occlusive or pain crises. This
is when the sick old red blood cells gather in certain areas of the body and
cause inflammatory actions that can cause a lot of pain in these children.
Usually pain crises occur in the arms, legs, back but really they can occur
anywhere in the body at any time. I had the sickle-cell comprehensive
neurodevelopmental clinic here at the Institute. We see patients with sickle
cell disease of all ages with all neurological and developmental diagnoses. Every month the sickle cell comprehensive clinic team members meet
to discuss patients coming up on the schedule, as well as patients that we’ve
seen in the past. The team works together and communicates about each patient
discussing whether or not the child is meeting their treatment goals and
whether other interventions may be needed. That way we have a comprehensive
plan that we follow up on whenever any provider from the team is able to meet
with the patient or the family, as well as preparing for changes to that
treatment plan if needed in the future. We have been finding that a lot of
children with sickle cell disease who have developmental disorders or
neurological conditions are getting missed and so aren’t being identified
early and really do need to be screened when they’re younger in order to better
identify and treat these diseases. We’re hoping that our research will prove that
children with sickle cell disease deserve neurological and developmental
evaluations as part of the typical disease management.

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