When your child has sickle cell disease, it affects their entire body. With so many possible complications, you may feel like waiting for disaster is your entire life. You want to have the confidence to manage your child’s health. But you need help.
At UVA Health Children’s, our comprehensive sickle cell clinic can help. We know the common complications of sickle cell disease. In addition to working to prevent complications, we’ll also help you learn to navigate your child’s medical needs.
What To Know About Sickle Cell Disease Complications
Many children with sickle cell disease will get only a few of these complications. Some of that is determined by which type of sickle cell disease your child has. Some of it, unfortunately, is seemingly random.
At regular follow-up visits, we’ll help you:
- Understand your child’s specific risk
- Have an emergency plan
- Communicate this information to teachers and other relatives
But above all else, we want to reduce the risk of complications. We’ll do this through:
- Managing with medication
- Nutrition
- Lifestyle adjustments
- Lab work
- Preventative imaging
Acute chest syndrome
If your child gets a lung infection, it can cause chest pain and a fever. While penicillin should prevent this, we’ll also make sure you know what to do if your child does get a fever. For children with sickle cell, fevers need extra attention.
Anemia
If your child starts having fatigue, paleness, shortness of breath, or yellowing skin and eyes (jaundice), they may have anemia. Anemia can be caused by several things, but in sickle cell disease, it’s caused by not having enough red blood cells.
We’ll keep an eye on your child’s red blood cell count through lab work. Depending on how significant it is, we may recommend preventative measures, like taking folic acid. Folic acid can help your child’s body make new healthy cells.
Sometimes, a blood transfusion is the best way to recover. If that’s the case, we’ll talk to you about what to expect.
Aplastic crises
If your child’s bone marrow becomes infected, it may stop making red blood cells. This can lead to anemia and may require a blood transfusion. Your child’s regular penicillin should help prevent this. But we’ll also talk about early warning signs to watch out for.
Chronic pain
In addition to pain crises, many people with sickle cell disease also struggle with chronic pain. In some ways, this can be more challenging to manage. We’ll talk you through ways to reduce the pain. As well as ways to manage it.
Eye problems
Eye problems, particularly issues with blood flow, can have serious effects on your child’s life. That’s why we start scheduling regular eye exams when your child turns 10. With regular exams, we can catch these eye problems before they worsen, and preserve your child’s vision.
Gallstones
Gallstones are a common problem for many adults. But with sickle cell disease, they can even occur in young children. Gallstones can be very painful. Though they can’t always be prevented, nutrition can help.
Infection
Because of SCD, your child is more likely to get infections, like pneumonia or meningitis. To prevent this, we’ll give your child penicillin. This antibiotic treats bacterial infections before they can cause serious complications.
We’ll also follow an accelerated vaccine schedule to make sure your child has additional protection against some common causes of infection. This includes earlier doses of vaccinations that prevent pneumonia and meningitis.
Joint disease
Sometimes, an infection in the bone (aseptic necrosis) can lead to a need for joint care. If found early enough, this complication can often be treated with medication. We’ll talk to you about recognizing the signs.
Priapism
Sickle cell disease can lead to unwanted and painful erections. We’ll help you talk to your child about erections. If an erection lasts longer than an hour, it’s considered an emergency. Without prompt medical care, your child could struggle with erectile dysfunction later in life.
Vaso-Occlusive Crisis or Pain Crisis
Even with management, 60% of children under the age of 14 have at least 1 pain crisis a year. For some, it can happen many times in a single year.
We’ll help you know when you can treat at home and when you need to either come to us or your nearest ER. While mild pain can be treated with comfort measures and over-the-counter medication, we’ll also prescribe stronger pain medications as needed. Some pain events will require medication only available in a hospital.
There are some things that can help your child avoid a pain crisis, like:
- Staying hydrated
- Avoiding extreme cold or heat
- Avoiding overexertion
We’ll also give your child a medication that reduces the number of pain crises they experience.
Splenic Sequestration
If blood becomes trapped in the spleen, it can lead to extreme pain in the left side. It causes your child’s spleen to enlarge, sometimes quickly. When blood stays trapped, it can even cause damage.
We’ll show you how to feel your child’s spleen, and how to tell when it’s enlarged. If you can tell it’s becoming enlarged, call your child’s provider. This helps prevent the problem from becoming more serious.
Stroke
Kids with sickle cell disease are at increased risk of stroke, including silent strokes. Silent strokes aren’t as obvious to catch, which is why we’ll do regular imaging. By using ultrasound to look at your child’s brain, we can make sure it’s healthy and everything is working the way it should.
Avoiding Complications
Sickle cell disease’s complications can be frightening. That’s why we help prepare you in advance. For many, knowing what to do can help reduce their fear. We also will do our best to prevent as many of these complications as possible. Our treatment plan for sickle cell disease helps to catch these problems early, before they become emergencies.