Many of us might not like cold winter weather. But for families of kids with sickle cell disease (SCD), winter is when they need to be really careful.
“While it’s entirely possible to control symptoms of sickle cell disease, times of stress—which can include extremes of weather, sickness and dehydration—can all cause symptoms to get worse,” said Dr. Nnenna Badamosi, a pediatric hematologist/oncologist and director of the sickle cell disease transition program at the Children’s Hospital of Georgia.
A little about sickle cell disease
Here in Georgia, about 1 in every 295 black or African-American babies born have sickle cell disease, according to the U.S. Centers for Disease Control and Prevention. That’s higher than the national rate, which is 1 in about 365.
Babies with sickle cell disease are born with genes that make their red blood cells—which are normally smooth and round—get hard and sticky and form a C-shape, like a farm tool called a sickle, whenever they get stressed out. Blood vessels also don’t dilate as well.
When those two things happen, the sickle cells can get stuck in blood vessels or in any of the body’s organs. That means blood doesn’t flow as well. Kids can start to hurt, especially in their fingers, hands, feet and legs. The sickle cells can also hurt our organs, and at their worst, can cause a stroke in the brain or stop blood from traveling to the lungs, both of which could be deadly. “Remember, blood cells go everywhere, so every single organ can be affected when someone has sickle cell disease,” said Badamosi.
Tips on weathering winter
Medicines like hydroxyurea and endari that people with sickle cell disease take every day can help keep blood cells round, but it’s still important for anyone with the disease to be a little extra careful, especially during winter.
This can include:
Dressing warmly:
“Your child might notice that he or she has more layers on that other kids,” said Badamosi. But when it’s cold outside, staying warm can help lower stress on the body.
Washing hands regularly:
“This is the most effective way to prevent most infections,” said Badamosi. So teach your child to wash hands before they eat—every time. If colds and flu are really going around your child’s school, it might be a good idea to keep your child at home if you can.
Getting vaccinated:
Ask your doctor about whether your child should get the pneumococcal vaccine, which is a one-time vaccine that can help keep your child from getting sick from pneumonia, ear infections, sinus infections and even meningitis. Children over 6 months should also get the flu vaccine every winter, preferably around October or November, to help protect him or her throughout flu season.
Taking allergy medicine, if your child has allergies:
We usually think of spring, summer and fall being the time when we worry about allergies, but in Georgia, allergy season can include winter too. Since sickle cell can affect the lungs, it’s important for kids to keep taking allergy medicines to keep them from getting allergy or asthma symptoms.
Avoiding certain sports:
The spleen is an organ in the belly area that helps filter our blood, and in those with sickle cell disease, it can get swollen. Any body-contact sports can hurt the spleen and start internal bleeding. Also, head injuries can increase the risk of stroke. Unfortunately, that means sports like football or boxing are off the table. For kids playing other sports, it’s still a good idea to dress warmly during the winter and to also drink plenty of water and stay hydrated. “What I tell kids is for them to listen to their bodies and if they don’t feel up to it or feel more tired, to let their teacher or coach know,” said Badamosi.
If there’s a problem
Even with being careful, kids with sickle cell disease can still get pain from time to time. Parents can make kids more comfortable with pain medicine and warm packs and can encourage them to drink lots of fluid.
If those don’t help and kids are still hurting, it’s a good idea to come in and see the doctor.
Signs of an emergency, where you should take your child to the ER right away, are:
- A fever higher than 101 degrees
- Symptoms like weakness on one side of the body, droopy eyelid or mouth, or not being able to speak, since this could be a sign of a stroke
- Struggling to breathe or constant wheezing
One of the hardest things sometimes is making sure children take their medicine every day, even if they feel good. “We encourage all patients not to start just when they have major symptoms,” said Badamosi. “These are lifelong medications.”
Finally, if your child has sickle cell disease, talk about what that means with family, friends, school and the community you interact in. And teach your child to talk about it too. “Talking is so important to help everyone around your child understand why your child can’t play certain sports or why he or she has to take medicine, when they don’t have to,” said Badamosi.
