Tag Archives: Children with Special Health Care Needs

Caring for a Child with Sickle Cell Disease

By Malerie Hartsell, MPH, CHES, DHEC’s Children with Special Health Care Needs Program

Sickle Cell Disease (SCD) affects many South Carolinians across the state who either have the disease or care for someone with SCD who needs their assistance. DHEC employee Brenda Green knows all too well the impact that SCD has had on her life and the life of her son, Braden.

Brenda is an environmental engineer with the Bureau of Water in the Domestic Wastewater Permitting Section. Ever since her family was informed of her son’s SCD diagnosis, she has been a champion and advocate for Braden and his health.

To help raise awareness during National Sickle Cell Awareness Month, Brenda did a Q&A interview with DHEC’s Children with Special Health Care Needs program to share a small piece of her SCD story and how the disease has impacted her family.

 Q:  Tell us about your son, Braden Green.

A:  Braden is 10 years old and in the 5th grade at Satchel Ford Elementary School. He loves school and his favorite subject is math.  He loves to draw, paint and create art.  He plays the piano, drums and just began the strings program at school where he will play the cello.  He loves ALL sports but plays little league baseball.  He knows the stats on almost all baseball, football and basketball teams and their star players.  He’s a really smart and sweet kid.

Q: You and your husband have three children, and your son has sickle cell disease. What are some things you have to be mindful about when raising and caring for Braden that you don’t necessarily worry about with your other children?

A:  I’m more mindful about a lot of things in comparison to his big sisters. It was more difficult during the first years of his life.  He wasn’t able to tell me where it hurts and how the pain felt.  I had to wonder, when he was an infant, whether he was crying because he was hungry, teething or having sickle cell pain.

Now that he is older, we use the number scale for pain that is used in the hospital (1-10 with 10 being the worst).  He can also tell me if it’s a sharp, dull or burning pain. I have to make sure he’s hydrated especially when he’s playing or practicing baseball.

I have to make sure he understands that he has to wash his hands and try to keep his hands from his face. Germs are not our friends at all times.  The common cold can be very dangerous to him.  He is most susceptible to pneumonia and has been hospitalized several times because of it.

I have to make sure he’s not too cold in the winter or too warm in the summer.  Even though it’s warm now, I make sure he takes his jacket to school just in case the classroom is cold.  Extreme temperatures can cause pain crises for him.

I worry about him at birthday parties, especially if they are running and playing.  He gets tired quicker than the average child but he will push himself if he’s not reminded to rest.  This is the same with him playing sports.  I’m also more mindful of the types of sports he plays.

Q:  What have you found to be the most helpful for your family since finding out Braden has SCD?

A: The most helpful thing that my husband and I have found is to be very observant of him and his symptoms and to make sure we’re responsible when it comes to his medical care.  We call his pediatrician if we are concerned and we make sure he attends all routine appointments.  It’s important that we continue to learn as much as we can about SCD and be very proactive with his care.

The pain level chart, I reference earlier, has been very helpful to us.  We now understand his pain tolerance better.  He can function normally until his pain is a 5.  At that point, he will take more frequent breaks and may ask for his heating pad.  Usually a pain of 8 or greater requires pain medication.  If we’re unable to control his pain at home, then it requires medical attention.

 Q: Braden has been attending Camp Burnt Gin for several summers. What has that experience been like for him and for your family?

A:  The experience has been wonderful.  He has made friends and has enjoyed being with other children who battle the same disease as him.  It’s his opportunity to relax and have fun without mommy hovering close.  My husband and I are happy that he can go to an overnight camp where he can have fun, experience the camp life just like the healthy kids and all the while at a safe location with his hematologist, Dr. Carla and his nurse, Nurse Julia on site.  What more could we ask for?

braden-and-dr-carla-camp-burnt-gin

Braden and Dr. Carla at Camp Burnt Gin, a summer camp in Wedgefield, SC for children with physical disabilites or chronic illnesses.

Q:  What advice would you give to other parents who have just learned their child has SCD?

A: Be encouraged and know that your child is so special and will teach you the true meaning of resilience and strength.  Use your resources.  Your child’s hematologist, pediatricians, nurses and other caregivers are all there to help your child and your family battle this disease.  Learn as much as you can. Document all that you learn and ask questions.

Finally, never, I mean never, be afraid or hesitant to be the main advocate for your child.  Through you being your child’s advocate you will teach your child to be able to advocate for themselves as they get older.

For more information on DHEC’s Children with Special Health Care Needs division, visit www.scdhec.gov/Health/ChildTeenHealth/ServicesforChildrenwithSpecialHealthCareNeeds/

 

Help is available for those challenged by sickle cell disease

By Malerie Hartsell, MPH, CHES
Program Coordinator
Children with Special Health Care Needs

When a child inherits sickle cell disease it can cause emotional, financial and other strain on a family.

It also raises serious questions, such as “How will our child cope with a disease that can cause sudden extreme, pain-filled episodes?” or “How will our family handle the challenge of caring for a child with a chronic, untreatable illness?”

While families bear much of the load, there are services in place to help, including those available through the S.C. Department of Health and Environmental Control’s Children with Special Health Care Needs program.

What kind of help does Children with Special Health Care Needs offer?

 Under the Bureau of Maternal and Child Health, Division of Children’s Health and the DHEC Lab, the Newborn Screening Program includes tests for SCD, sickle C disease, sickle B thalassemia, and variant hemoglobinopathy disorders and traits, including sickle cell trait. Based off DHEC Lab Newborn Screening data, there are approximately 70 babies born with SCD annually and over 2,400 babies identified to have SCT.

After a diagnosis is confirmed, the Children with Special Health Care Needs Program assist South Carolinians by covering:

  • medical service expenses
  • physician visits
  • durable medical equipment
  • medical supplies
  • prescription drugs

Additionally, Care Coordinators in DHEC Regional offices provide information and/or referral, and support services.

Every summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, where they enjoy a fun camping experience while learning about blood disorders, treatment and ways to manage the disease.  The week at Camp Burnt Gin is a partnership between DHEC’s CSHCN program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving campers a positive childhood experience.

Community based organizations at work

Through partnerships with four sickle cell community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the Louvenia D. Barksdale Sickle Cell Anemia Foundation, the Orangeburg Area Sickle Cell Foundation and the COBRA Human Services Agency Sickle Cell Program — more persons with sickle cell are able to obtain services and support.  These organizations work tirelessly to provide educations and counseling, testing for sickle cell trait, family support and education for hospital staff.

Throughout September, which is Sickle Cell Awareness Month, each community based organization will engage community members in different events to help promote and increase awareness about SCD.

If you have questions about testing for you or your family, you can visit one of the four sickle cell community based organizations.  For more general information about sickle cell, visit cdc.gov/sicklecell or http://www.nhlbi.nih.gov/health/health-topics/topics/sca.

SickleCellSeptemberEvents

World Sickle Cell Day Shines Light on Need for Support, Services

Malerie Hartsell, MPH, CHES
Program Coordinator
Children with Special Health Care Needs

Each summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, enjoying a fun camping experience while learning about the blood disorder, treatment and ways to manage the disease.

The experience is a result of a partnership between the S.C. Department of Health and Environmental Control’s (DHEC) Children with Special Health Care Needs (CSHCN) program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving the youngsters a positive childhood experience.

“I used to think I was different from everyone else,” one young camper told CSHCN Program Manager, Jessica Drennan last summer during camp. “But then I came to camp and made friends with people just like me. We can go swimming and play basketball and have fun like all the other kids.”

That’s what efforts such as that at Camp Burnt Gin and World Sickle Cell Day are all about: helping those diagnosed with this disease live as normal a life as possible.

World Sickle Cell Day, which is June 19, seeks to raise awareness of sickle cell disease (SCD) and the struggles those diagnosed with the disease and their families go through as well as support and encourage research, treatment and management of the disorder.

 What is SCD? SCD is a blood disorder that causes sickling of the red blood cells, which diminishes the amount of oxygen the red blood cell can carry throughout the body.  Persons who have SCD suffer from crises — episodes of intense and excruciating pain that may be in one or multiple parts of the body when sickle-shaped red blood cells become stuck in a blood vessel and cause a disruption of blood flow in that particular area.  While people are most familiar with sickle cell anemia, someone can also have sickle cell thalassemia, sickle beta thalassemia, or one of the other variations of sickle cell.  The different types of sickle cell are caused by different genetic mutations.

People born with the sickle cell trait usually do not have the symptoms of sickle cell disease, but they could pass the trait on to their children. If one parent has the trait and the other does not, their children won’t inherit SCD but each has a 50 percent chance of having the trait. If both parents have the trait, each of their children has a 50 percent chance of carrying the trait and a 25 percent chance of having SCD.

Who is affected?

While sickle cell disease affects millions of people throughout the world, it is more common among African-Americans. It is estimated that SCD affects 100,000 people in the United States.

 How is DHEC involved?

Under the Bureau of Maternal and Child Health, Division of Children’s Health and the DHEC Lab, the Newborn Screening Program includes tests for SCD, sickle C disease, sickle B thalassemia, and variant hemoglobinopathy disorders and traits, including sickle cell trait.  After a diagnosis is confirmed,  the Children with Special Health Care Needs Program assists South Carolinians by covering medical service expenses, such as physician visits, durable medical equipment, medical supplies, prescription drugs, information and/or referral, and support services. In addition, they provide care coordination, information and referral and support services.

Through partnerships with four community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the L.D. Barksdale Sickle Cell Anemia Foundation, the Orangeburg Area Sickle Cell Foundation and the COBRA Human Services Agency Sickle Cell Program — more persons with sickle cell are able to obtain services and support.  These organizations work tirelessly to provide education and counseling, testing for sickle cell trait, family support and education for hospital staff.