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Patients, Families and Friends
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This is a new program for children with sickle cell disease and brain disorders and who may be getting regular blood transfusions or iron chelation therapy.
Stroke or other neuro-developmental (brain) disorders can completely change the lives of children and their families. This can add a great deal of stress and frequent medical care to families already living with sickle cell disease. Children with stroke may need to see many specialists, including a hematologist, neurologist, therapists (physical, occupational, or speech), learning specialists, and social workers. These children may have many appointments for transfusions, rehabilitation therapies, special tests, and use Desferal at home for iron removal. We are planning a special clinic program at Hughes Spalding Children’s Hospital when many of these specialists will be able to see your child on the same day. We hope that this program will save you some trips to the hospital and clinic. It will also help your doctors and specialists work more closely together as a team to best treat your child.
STARS clinic will meet once a month on a Thursday morning at Hughes Spalding Children’s Hospital beginning in the year 2000. A clinic visit will be all morning, from 9 am – 12 noon. Every child would see each team member he or she needs. A child can come to the STARS clinic 1-2 times a year to help coordinate the many aspects of their sickle cell care, transfusions, chelation therapy, rehabilitation, and learning needs. Parking for these visits will be free of charge.
We look forward to hearing about your ideas about how to make this program best help your child and family.
STROKE in sickle cell disease
A stroke is an injury to the brain that happens when there is not enough blood circulation and oxygen to the brain. About 6-8% of all people with sickle cell anemia (Hemoglobin SS) may have a stroke. Symptoms of stroke include weakness of arms, legs, or face, seizures or convulsions, difficulty with speaking or seeing, a very bad headache, numbness or tingling. Once a stroke occurs, some people fully regain their original abilities, but some functions may not completely get back to normal for everyone. A stroke is diagnosed by a doctor’s physical exam and brain scans called CT or MRI.
The main treatment of stroke is red blood cell transfusions. When the stroke first occurs, most people receive an exchange transfusion to reduce the blockage of blood circulation by sickle cells. After that, monthly transfusions are recommended because there is a very high chance of the child having another stroke if they do not receive transfusions.
Rehabilitation and educational services may be needed to help a person who may still be weak, have trouble speaking, have more difficulty learning, or trouble with memory.
Counseling may be helpful for the person with stroke or his/her family members who may be feeling sadness, frustration, or anger about this major change in their lives.
After about two years of monthly blood transfusions, people will have too much iron in their bodies. Iron chelation (removal) therapy with Deferoxamine (Desferal) is needed to help keep the body healthy from too much iron.
What do the specialists do?
Hematologists: These are the blood specialists. The Pediatric Sickle Cell team works together to help patients maintain good general health, prevent and treat sickle cell problems, organize transfusions and iron chelation therapy, and coordinate the overall care for patients with sickle cell disease.
Developmental Pediatricians: These are pediatricians who have special training in helping children who have disorders of the brain that may result in problems with movement, development, learning, or behavior.
Therapists: Rehabilitation means to regain the ability to do things after an injury or illness. Physical therapists help people with their movement. Occupational therapists work with people who need help taking care of themselves. Speech therapists help people who may have trouble speaking and understanding speech.
Audiologists: Good hearing is important for people to be able to communicate and be understood. The audiologist tests people’s hearing to identify if there are any problems and works with patients who have trouble hearing.
Pediatric Psychologists and Learning Specialists: