Chronic conditions

Types of Insulin

Controlling diabetes can be akin to piloting a ship between two icebergs. Veer off course in one direction, and your blood sugar rises alarmingly high. Stray too far the other way, and you’re confronting an equally dangerous situation: blood-glucose deficiency, or hypoglycemia, the most common acute complication among young persons with diabetes. Even the most conscientious patients overshoot or undershoot their marks now and then, due to their own miscalculations of how much insulin to take or to complicating factors like physical illness, exercise or emotional stress.

Chronic conditions

Type 2 Diabetes: Tips for Healthy Living

Type 2 Diabetes: Tips for Healthy Living

Children with type 2 diabetes can live a healthy life. If your child has been diagnosed with type 2 diabetes, your child’s doctor will talk with you about the importance of lifestyle and medication in keeping your child’s blood glucose (blood sugar) levels under control.

About Blood Glucose

Glucose is found in the blood and is the body’s main source of energy. The food your child eats is broken down by the body into glucose. Glucose is a type of sugar that gives energy to the cells in the body.

The cells need the help of insulin to take the glucose from the blood to the cells. Insulin is made by an organ called the pancreas.

In children with type 2 diabetes, the pancreas does not make enough insulin and the cells don’t use the insulin very well.

Managing Blood Glucose Levels

Glucose will build up in the blood if it cannot be used by the cells. High blood glucose levels can damage many parts of the body, such as the eyes, kidneys, nerves, and heart.

Your child’s blood glucose levels may need to be checked on a regular schedule to make sure the levels do not get too high. Your child’s doctor will tell you what your child’s blood glucose level should be. You and your child will need to learn how to use a glucose meter. Blood glucose levels can be quickly and easily measured using a glucose meter. First, a lancet is used to prick the skin; then a drop of blood from your child’s finger is placed on a test strip that is inserted into the meter.

Medicines for Type 2 Diabetes

Insulin in a shot or another medicine by mouth may be prescribed by your child’s doctor if needed to help control your child’s blood glucose levels. If your child’s doctor has prescribed a medicine, it’s important that your child take it as directed. Side effects from certain medicines may include bloating or gassiness. Check with your child’s doctor if you have questions.

Along with medicines, your child’s doctor will suggest changes to your child’s diet and encourage your child to be physically active.

Tips for Healthy Living

A healthy diet and staying active are especially important for children with type 2 diabetes. Your child’s blood glucose levels are easier to manage when you child is at a healthy weight.

Create a Plan for Eating Healthy

Talk with your child’s doctor and registered dietitian about a meal plan that meets the needs of your child. The following tips can help you select foods that are healthy and contain a high content of nutrients (protein, vitamins, and minerals):

  • Eat at least 5 servings of fruits and vegetables each day.
  • Include high-fiber, whole-grain foods such as brown rice, whole-grain pasta, corns, peas, and breads and cereals at meals. Sweet potatoes are also a good choice.
  • Choose lower-fat or fat-free toppings like grated low-fat parmesan cheese, salsa, herbed cottage cheese, nonfat/low-fat gravy, low-fat sour cream, low-fat salad dressing, or yogurt. 
  • Select lean meats such as skinless chicken and turkey, fish, lean beef cuts (round, sirloin, chuck, loin, lean ground beef—no more than 15% fat content), and lean pork cuts (tenderloin, chops, ham). Trim off all visible fat. Remove skin from cooked poultry before eating.
  • Include healthy oils such as canola or olive oil in your diet. Choose margarine and vegetable oils without trans fats made from canola, corn, sunflower, soybean, or olive oils.
  • Use nonstick vegetable sprays when cooking.
  • Use fat-free cooking methods such as baking, broiling, grilling, poaching, or steaming when cooking meat, poultry, or fish.
  • Serve vegetable and broth-based soups, or use nonfat (skim) or low-fat (1%) milk or evaporated skim milk when making cream soups. 
  • Use the Nutrition Facts label on food packages to find foods with less saturated fat per serving. Pay attention to the serving size as you make choices. Remember that the percent daily values on food labels are based on portion sizes and calorie levels for adults.

Create a Plan for Physical Activity

Physical activity, along with proper nutrition, promotes lifelong health. Following are some ideas on how to get fit:

  • Encourage your child to be active at least 1 hour a day. Active play is the best exercise for younger children! Parents can join their children and have fun while being active too. School-aged child should participate every day in 1 hour or more of moderate to vigorous physical activity that is right for their age, is enjoyable, and involves a variety of activities.
  • Limit television watching and computer use. The AAP discourages TV and other media use by children younger than 2 years and encourages interactive play. For older children, total entertainment screen time should be limited to less than 1 to 2 hours per day.
  • Keep an activity log. The use of activity logs can help children and teens keep track of their exercise programs and physical activity. Online tools can be helpful.
  • Get the whole family involved. It is a great way to spend time together. Also, children who regularly see their parents enjoying sports and physical activity are more likely to do so themselves.
  • Provide a safe environment. Make sure your child’s equipment and chosen site for the sport or activity are safe. Make sure your child’s clothing is comfortable and appropriate.
Chronic conditions

Type 1 Diabetes: A Guide for Families

Type 1 Diabetes: A Guide for Families

What is Type 1 Diabetes?

Type 1 diabetes is a disease caused by a lack of insulin. Insulin is needed to allow sugar to move from the bloodstream into the cells to be used for energy. Nutrients in food are changed into a sugar called glucose. People with type 1 diabetes cannot make insulin, and without insulin, glucose is “stuck” in the bloodstream, leading to a high level of glucose in the blood. Type 1 diabetes affects about 1 in 400 children, adolescents, and young adults under 20 years of age. Currently, once diagnosed, type 1 diabetes is a lifelong disease that cannot be cured. However, the administration of insulin is a very effective treatment for type 1 diabetes.

What Causes Diabetes?

Type 1 diabetes is caused by the inability of the pancreas to produce insulin. Insulin is produced in special cells (called beta cells) in the pancreas, which is an organ located in the belly. In children with type 1 diabetes, the immune system “misbehaves.” Normally, the immune system produces special proteins called antibodies that defend the body against infections, but in type 1 diabetes, the immune system attacks its own beta cells by producing antibodies against them. This ongoing attack results in over 90% destruction of beta cells, which may occur quickly or over a period of years, and ultimately leads to an inability to produce adequate levels of insulin.


The symptoms of type 1 diabetes are largely due to the lack of energy caused by an inability to use the nutrients eaten and by the high sugar levels in the bloodstream pulling water from the body into the bloodstream and spilling into the urine, causing dehydration (lack of fluids).

These symptoms include:

  • Hunger, at times extreme, and associated with weight loss
  • Increased thirst and increased urination – the latter can be missed in infants who are not toilet trained, because parents may not realize that they are in need of more frequent diaper changes; also, “accidents” in a toddler and older children previously toilet trained may be overlooked.
  • Fatigue
  • Irritability or unusual behavior
  • Blurry vision (not a common symptom but can occur if the sugar is very high)

If untreated, the following symptoms can occur that require immediate medical care:

  • Nausea
  • Vomiting
  • Belly pain
  • Rapid breathing and drowsiness
  • Loss of consciousness

How is Type 1 Diabetes Diagnosed?

The diagnosis is made when a child has classic symptoms of diabetes as described above with abnormally high blood sugar levels and ketones in the urine. Diabetes can also be diagnosed by a test that reflects what the average blood sugar has been in the blood over the previous 3 months. This test is called hemoglobin A1c (HbA1c). A result that is equal to or greater than 6.5% is suggestive of diabetes.

If you are worried that your child may have symptoms of type 1 diabetes:

Bring your child to his doctor right away, and the doctor can easily check for sugar in the urine or obtain a drop of blood from the finger to check the blood sugar level with a glucose meter (a small portable machine). We advise that you do not try to borrow a glucose meter from a relative or friend to check the blood sugar, because you may not do it correctly and/or the home meter may not be working properly. Before a child develops full-blown type 1 diabetes, a phase of prediabetes may be present.

How is Type 1 Diabetes Treated?

Diabetes is treated by giving back the very hormone that is missing, called insulin. Insulin is given as several daily injections with small syringes with very thin and short needles that make the injections almost pain free. The injections are most commonly given in the upper part of the arms, in the front of the thighs, and in the fatty skin of the belly. Insulin can also be given continuously via a small machine (often referred to as a “pump”) that gives insulin through a small plastic tube (called a “catheter”), which can be inserted by the parent or the affected child.

Treatment is aimed at normalizing blood sugar levels, but this is not a simple task, and patients need to check blood sugars several times daily with a finger stick. To measure blood sugar, a small drop of blood is obtained using a very fine lancet device and then put on a strip that is then inserted into a home glucose meter.

A healthy diet is also very important in type 1 diabetes, and insulin dosing needs to be matched with the amount of sugar (called carbohydrate) taken in. Being physically active is also key, and insulin often needs to be reduced at times of physical activity.

Some people with insulin pumps also wear continuous glucose monitors that measure the levels of sugar in the fatty space under the skin through another catheter. Islet cell and pancreas transplantation is an experimental treatment carried out in adults only and in very limited settings throughout the United States.

Can Type 1 Diabetes Be Prevented?

Thus far, a strategy for preventing the development of type 1 diabetes is not available. Relatives of people with type 1 diabetes are at higher risk of developing type 1 diabetes compared with children and young adults who do not have any relatives with type 1 diabetes in their extended family. Diabetes cannot be predicted with certainty; however, special blood tests are available to measure the risk of diabetes in an unaffected relative of a person with type 1 diabetes.

Chronic conditions

Treating Lupus in Children and Teens: Medication Options

Treating Lupus in Children & Teens: Medication Options

Systemic lupus erythematosus (lupus) is a chronic condition that can affect various parts of the body. Children who have lupus often need multiple medications to help manage their symptoms. Since lupus affects every person differently, not every child will need the same medications. Your doctor will work with you to develop a treatment plan that is best for your child’s individual needs.

What medications are used to treat lupus?


Lupus causes the immune system to overreact, which leads to excess inflammation. Lupus medications work by preventing your child’s immune system from becoming overactive. These medications are called immunosuppressants.


Also known as “steroids” (though these aren’t the same as the steroids that athletes sometimes use), corticosteroids are often the first immunosuppressant medication your child’s doctor will prescribe after lupus is diagnosed. This is because steroids work quickly to suppress the immune system and ease symptoms. However, because of their side effects (see below), steroids aren’t a long-term medication option. Over time, if your child’s symptoms and lab work are improving, the dose will be tapered off.

Maintenance medications

The goal for your child’s long-term treatment will be another kind of immunosuppressant called a “steroid-sparing” maintenance medication. There are several types of maintenance medications that doctors use to treat lupus in children. The one your doctor chooses often depends on which part of your child’s body has disease activity.

Some examples of maintenance medications include:

  • Mycophenolate mofetil—a daily oral medication
  • Azathioprine—a daily oral medication
  • Tacrolimus—a daily oral medication
  • Belimumab—a monthly intravenous (IV) medication

If your child’s disease is more severe, your pediatric rheumatologist may recommend treatment with a stronger IV immunosuppressant that’s normally used to treat some kinds of cancer. These medications have also been shown to be effective in treating severe, active lupus and they include:

  • Cyclophosphamide
  • Rituximab

For kids with severe arthritis symptoms, your doctor might prescribe an immunosuppressant that’s used to treat juvenile idiopathic arthritis (JIA) such as:

  • Methotrexate—either an oral medication or an injection
  • Biologic medications such as abatacept or tocilizumab—either an injection or an IV infusion

Methotrexate shouldn’t be given to children whose kidneys are affected by lupus, which is called lupus nephritis.


Hydroxychloroquine—A daily oral medication that’s used along with steroids and/or maintenance medications, hydroxychloroquine is in a group of medications called antimalarials. It has been shown to help prevent lupus flares and treat skin and joint symptoms.

Nonsteroidal anti-inflammatory drugs (NSAIDs)—​NSAIDs like ibuprofen or naproxen can also be used along with other medications for children who have arthritis. If your child has lupus nephritis, NSAIDs aren’t a good choice because they can cause kidney damage.

What are the side effects of all these medications?


Your child will likely need to be on steroids at some point. But since using steroids for a long period of time increases the chances of serious side effects, your doctor will take your child off them as soon as possible.

Possible side effects of steroids include:

  • Weight gain
  • Increased appetite
  • Elevated blood sugar
  • High blood pressure
  • Weak bones
  • Mood changes
  • Glaucoma
  • Cataracts
  • Stomach upset

While your child is on steroids, taking calcium and vitamin D supplements every day can help prevent bone damage, and an over-the-counter acid-reducer can help minimize an upset stomach.

Maintenance immunosuppressants

Children need to be monitored with regular exams and bloodwork while taking maintenance immunosuppressants like mycophenolate mofetil, azathioprine, tacrolimus, belimumab, cyclophosphamide, and rituximab.

Side effects of these medications may include:

  • Allergic reactions
  • Gastrointestinal issues like abdominal pain, nausea, or diarrhea
  • Changes in blood test results
  • Depression
  • Injection site reactions (for injected medications)

Cyclophosphamide has other specific potential side effects too, including:

  • Hair loss—This may be prevented by putting ice caps on your child’s scalp during the infusion.
  • Fertility issues—Your doctor may discuss hormone treatment with you to help.
  • Bladder problems—Your doctor will give your child another medication and fluids to prevent this.

All immunosuppressants

Because steroids and other immunosuppressants stop parts of the immune system from working well, children taking these medications may have a higher risk for certain infections. It’s important to consult with your pediatric rheumatologist if your child develops a fever while on these treatments.

Children on immunosuppressive medications can receive routine childhood vaccinations that are inactive, but they shouldn’t receive “live” vaccinations (for instance, vaccines for measles-mumps-rubella [MMR], varicella, rotavirus, or yellow fever). Live vaccinations may cause an active infection in your child because of their weakened immune system.

Some of these medications have been linked with developing cancer. This has been a big concern for many healthcare providers and parents, but since the research isn’t clear, this link has been controversial.

If you have questions, be sure to talk to your child’s pediatrician or pediatric rheumatologist.


Hydroxychloroquine is generally well tolerated with minimal side effects. The most serious side effect of long-term use of hydroxychloroquine is damage to the retina, which is in the back of the eye. This risk increases the longer your child takes the medication, so they will need to see an eye specialist called an ophthalmologist to be closely monitored.

All medications

Some of these medications may be harmful to a developing fetus during pregnancy, so sexually active adolescent females need to be aware of these risks and be on some type of birth control. Ideally, these birth control treatments shouldn’t contain estrogen, because this could increase the risk of blood clots.

What other types of medication are given to patients with lupus?

Depending on your child’s lupus symptoms, additional medications may be used along with any of the above medications. For instance, if your child has skin rashes, medications that are applied to the skin may be prescribed. Children with lupus nephritis may need medications to lower their blood pressure. Blood thinners might be prescribed for kids who have had blood clots.


Talk with your child’s doctor if you have any questions about any medications your child is taking, or any other concerns about their health.

Chronic conditions

The Stresses Faced By Teenagers Who Are Chronically Ill or Disabled

​In the immediate aftermath of a diagnosis, expect your teen to ask countless questions:

  • “Is this going to affect the way I look?”
  • “Am I going to have to miss a lot of school?”
  • “Don’t tell me I won’t be able to go out for the lacrosse team this year!”
  • “What if the other kids laugh at me because the chemotherapy makes my hair fall out?”

These questions may demand thoughtful, well-informed answers. Bear in mind that young people’s fears about medical matters may be based on misinformation. For instance, a patient recently diagnosed with Hodgkin’s disease might sadly conclude that he doesn’t have long to live. After all, everyone knows that cancer is deadly; only the year before, his favorite aunt died of ovarian cancer.

What he needs to hear from both his doctor and his parents is that there are more than one hundred forms of cancer—many of them highly treatable. In addition, the outlook for children’s malignancies tends to be more favorable than for adult tumors. Hodgkin’s disease happens to be the most curable pediatric cancer; nine in ten kids live five years from the time of diagnosis, at which point they can essentially be declared cured.

Another frequent source of anxiety is upcoming medical tests and procedures. A fourteen-year-old boy slated to undergo magnetic resonance imaging (MRI) is utterly convinced that the scan is going to hurt. It’s got to: “Did you see the size of that machine? Or what if it zaps me and I become radioactive?!”

The scanner is an imposing piece of equipment, to be sure. But he’ll be relieved to hear tha​t an MRI uses electromagnetic energy, not radiation, to visualize the body. He won’t feel any pain, and he most certainly won’t glow in the dark. A kid who is prone to claustrophobia, though, may turn panicky when the portable examining table draws her into the narrow tunnel. Mom and Dad, as her advocates within the medical system, should alert the doctor ahead of time about her aversion to confined spaces. He might prescribe a mild shortacting sedative to be taken prior to the test or arrange for an “open” MRI scanner to be used.

To find out what your child can expect, ask the physician or one of the nurses to describe the procedure step by step. Many medical practices routinely provide informative, illustrated pamphlets beforehand.

An adolescent should feel that he can always share what is worrying him. But, kids don’t always say what’s on their minds. In addition to being active, empathetic listeners, we need to anticipate what they may be feeling.

“Honey, you seem a bit down today. I know that having diabetes is hard for you sometimes…”

“Yeah, a little down… A lot, really.”

“What is it exactly that’s bothering you? Maybe I can help.”

“I’m just scared, that’s all.”

“Scared about the future?”

“Yeah, that. What if one of those terrible things that happens to people with diabetes happens to me, like losing my sight? Or what if the diabetes messes up my kidneys? I don’t want to have to go on one of those artificial kidney machines. I can’t believe I’m seventeen and have to worry about this stuff. It’s not fair!”

Perhaps nothing we say will dispel our child’s sadness or resentment or rage at being saddled with a health problem. However, listening nonjudgmentally and letting our children know they can talk to us any time is beneficial. For a young person, the realization that he can express his feelings freely, without being told, “You shouldn’t be (angry, depressed, etc.),” is psychologically therapeutic in itself.

Honesty Is the Best Policy

Some mothers and fathers deliberately conceal all details of the illness from the young patient, operating under the misconception that they are safeguarding their child from potentially devastating news. Seriously ill teenagers instinctively know about their condition. Ironically, they frequently refrain from discussing this with Mom and Dad for much the same reason: to protect their grief-stricken parents.

How do they know? Their bodies tell them. In addition, no matter how careful the adults around them are, kids glean fragments of conversations and take notice of grim expressions. Ultimately, to deny a sick person the truth about his condition is an unintentionally selfish act; all the more so in the setting of a terminal disease. Children need to talk about what they’re feeling—including their fears, their conceptions of death and dying; whatever is on their minds. No one should take away their right to talk about these issues.

On the other hand, while it’s important to answer questions honestly, try to emphasize the positive whenever possible. Let’s return to the earlier example of the adolescent diabetic who is concerned that he might develop a serious long-term complication. His mother and father might say something like this:

“The doctor doesn’t know for sure what’s going to happen years from now. But most kids with diabetes go on to live normal life spans. We’re confident that you will, too. The best thing we can do is to make sure that you stay healthy by keeping your blood sugars within a normal range. Never think that you’re all alone in this; we’re here to help you, and so are your brothers and sister.”

Tips for Reducing Anxieties

  • Techniques such as deep breathing, progressive muscle relaxation and visualization can help to soothe jangled nerves before and during medical procedures.
  • Tell your teenager about thought stopping, which will allow him to control the mind instead of the other way around. Each time a negative thought comes a-knocking—about an impending needle stick, for example—the teenager literally orders his brain to switch channels. “Okay, stop it! Turn off that thought right now! Think about something else.” It may sound overly simplistic, but with practice, this method can be extremely effective.
Chronic conditions

Social Difficulties for Children with Chronic Illness

A chronic illness can present a special challenge for your child as she relates to other children. Youngsters constantly scrutinize one another. A child with a visible disability or one who receives special treatment may be singled out by classmates because of those differences. Middle childhood is a hard time of life for children to feel that they are different in their appearance or their ca­pacity to keep up with classmates. A condition that requires medication, fre­quent absences from school, rest periods, or special equipment, such as braces or eye patches, can cause embarrassment and make children feel like outsiders.

However, children who differ in health, race, religion, family, and a myriad of other circumstances can discover that they have more similarities than differ­ences. One of the goals for your child’s school experience is that she learn to accept and be accepted by others, regardless of differences. Bear in mind that while feeling different can be traumatic, most youngsters are quite resilient.

They and their families not only usually learn to accept their limitations, but also find creative alternatives to problems that initially may have seemed overwhelming. These children—when assisted and supported by family, friends, and professionals—can develop into stronger individuals, despite their extra burdens.

On the academic side, children with chronic illnesses and normal intelli­gence should demonstrate classroom achievement just as high as that of their peers. Yet studies show that many of these youngsters underachieve at school. This may occur for a number of reasons. Their stamina may be lower, or their medication may impair their alertness or make them irritable. If their illness causes them frustration, they may have emotional or behavioral prob­lems that can interfere with schoolwork.

With diseases like sickle-cell anemia, asthma, cystic fibrosis, and diabetes, youngsters may frequently miss several days of school at a time, a period that may not be long enough to qualify for a home teacher. Hospitalizations may also keep them away from the classroom. In situations like this, your child could be at a disadvantage. If she falls behind her classmates because she is absent from school too much, she may become frustrated and her motivation may falter. She might also become anxious about having to catch up on missed assignments. This anxiety can lead her to avoid school, even when she is phys­ically able to attend.

Most of these issues, however, can be dealt with successfully by working with the teacher, the pediatrician, and/or a child psychologist. If your child has a health problem that is likely to interrupt her regular attendance at school, plan ahead. Meet with her teacher at the start of each school year to discuss how best to keep your child up to date on her work. Plan how home­work will be sent home and thereby prevent your child from slipping too far behind. Since your child may have frequent doctor’s appointments, discuss with your child’s physician the importance of scheduling them after school hours whenever possible so as to avoid missing class.

Also, by keeping your youngster’s teacher updated about her health condi­tion, you and your pediatrician can work with the teacher to prevent unnec­essary disruptions of your youngster’s academic progress. However, be cautious about requesting preferential treatment for your youngster at school. If her teacher frequently excuses her from homework or exams, your child may become overly dependent on this kind of special attention. The teacher may also underestimate the child’s real capacity for learning and therefore have lower expectations. Most schools provide home teaching for long or in­termittent, frequent absences; this usually requires a statement of necessity from your child’s pediatrician or primary physician and should be based on a careful assessment of the benefits and risks for your child.

Chronic conditions

Sickle Cell Disease: Information for Parents

Sickle Cell Disease Information for Parents

Every year, roughly 2,000 babies are born with sickle cell disease, the most common inherited blood disorder in the United States. Children with sickle cell disease experience episodes of severe pain and ongoing medical challenges. Early and ongoing medical care can minimize complications and help children with the disorder lead full and active lives. 

The following frequently asked questions from the American Academy of Pediatrics (AAP) will help you learn more about sickle cell disease in infants and children, as well as explain the differences between sickle cell disease and sickle cell trait.

What is sickle cell disease?

In children with sickle cell disease, a protein called hemoglobin inside the red blood cells forms chains that clump together and cause the red blood cell to be shaped like a crescent moon or the letter C―called a sickle cell.  

Compared to normal red blood cells that are disk-shaped and flexible, sickled cells are stiff, fragile and sticky. This results in the blocking of normal blood flow, preventing blood, and the oxygen it carries, from getting everywhere in the body.

How do infants and children get sickle cell disease?

They are born with sickle cell disease. Sickle cell disease is a genetic condition, so children get it in the same way they inherit the color of their eyes, skin, and hair―through the combination of genes they inherit from their parents. 

What are the chances my baby will have sickle cell disease?
Everyone inherits one hemoglobin gene from their mother and one hemoglobin gene from their father. Inheriting one mutated or abnormal gene, but having a normal gene from the other parent, is called having a trait. Inheriting two abnormal hemoglobin traits or genes determines whether a child has sickle cell disease.To picture how it works, the normal hemoglobin gene is labeled A. The most common mutated hemoglobin genes or hemoglobin traits are called S or C. The mutated (changed or abnormal) hemoglobin gene associated with sickle cell disease is labeled S. Common types of mutated hemoglobin genes that combine with S to cause sickle cell disease are S, C, and Beta thalassemia.People who have inherited one of the following gene combinations DO NOT have sickle cell disease:A + A (AA): no sickle cell diseaseA + S (AS): carrier of the hemoglobin “S” gene, known as sickle cell traitA + C (AC): carrier of the hemoglobin “C” gene
People who have inherited one of the following gene combinations DO have sickle cell disease:S + S (SS): Sickle cell anemia or Hemoglobin SSS + C (SC): Sickle hemoglobin C disease or Hemoglobin SCS + beta thalassemia trait (S-beta thalassemia): a form of sickle cell disease

How do I know if my baby has sickle cell trait or disease?

Every state in the U.S. performs a newborn screening test for sickle cell disease. If this test finds signs of the disease, the baby is referred to a pediatric hematologist. If the test suggests sickle cell trait, the parents are counselled by the general pediatrician, and the child generally does not need to see a hematology specialist.

Early diagnosis, before infants show any symptoms, allows infants with sickle cell disease to get early treatment and may decrease their risk of infections and other serious complications.

In addition to regular visits with their pediatrician, children with sickle cell disease should see a pediatric hematologist at least periodically. These doctors specialize in the care of children with sickle cell disease.

Why is sickle cell disease more common in children of African heritage?

A carrier of a single hemoglobin S gene is said to have sickle cell trait or hemoglobin S “trait.” About 1 in 12 people of African ancestry carry the S trait. Sickle cell trait is also common in people with ancestors from the Caribbean, Middle East, India, South America, Central America, and Mediterranean countries such as Turkey, Greece, and Italy. Sickle cell trait is found today in descendants of these populations no matter where they live.

People with hemoglobin S trait alone do NOT have sickle cell disease. However, if their reproductive partner also has the hemoglobin S trait, then together they have a 1 in 4 chance (25%) of having a child with sickle cell disease. This is why even bi-racial and/or multi-racial children can have sickle cell disease; about 1 in 365 people of African ancestry have sickle cell disease.

Why is sickle cell disease sometimes called sickle cell anemia?

Sickle cell disease is an umbrella term for the many specific types of sickle cell disorders. Anemia―meaning a lower-than-normal number of red blood cells―happens with all forms of sickle cell disease. While normal red blood cells can live for 120 days, sickled cells last only 7 to 20 days; the body can’t replace them fast enough, which results in anemia.

Children who have inherited two abnormal genes have sickle cell disease; which specific genes have been inherited determines what the disorder is called. Sickle cell anemia refers to the two most severe forms of the sickle cell disease, hemoglobin SS and sickle beta zero thalassemia.

Main Types of Sickle Cell Disorders​
Hemoglobin SSThe most severe form, affecting 65% of children with sickle cell disease. Most or all the hemoglobin is abnormal, causing chronic anemia.
Hemoglobin SC DiseaseRoughly 25% of children with sickle cell disease have this generally mild to moderate form. Symptoms generally develop later in childhood, but may be as severe as in SS.
Sickle Beta Zero ThalassemiaA severe but less common form, accounting for 2% of sickle cell disease. It is similar to hemoglobin SS.
Sickle Beta Plus ThalassemiaAffects around 8% of children with sickle cell disease. This is generally considered a mild form of the disease, but severity can vary greatly.

Why are infants and children with sickle cell disease at higher risk of infection?

Sickle cell disease may cause damage to the spleen, kidneys, lungs and brain. Once damaged by sickled cells, the spleen may not be able to filter bacteria from the blood as well as normal. As a result, infants and children with sickle cell disease have a compromised immune system, which means they are more likely to have certain infections that can be fatal.  

Antibiotics to prevent secondary infections in infants & children with sickle cell disease:
National guidelines recommend newborns diagnosed with sickle cell disease (SS and S beta zero thalassemia) receive antibiotics twice a day until they are 5 years old.Research shows that children with sickle cell anemia given twice daily penicillin (an antibiotic) had an 84% less risk of Streptococcus pneumoniae bacterial infection―which can cause serious conditions like pneumonia and meningitis.  

Are there any health complications associated with only having sickle cell trait?

Most people with sickle cell trait do not have any symptoms of sickle cell disease. In very rare cases, however, people with sickle cell trait may experience complications of sickle cell disease such as “pain crises” and, in extreme circumstances, sudden death. According to the Centers for Disease Control and Prevention, more research is needed to find out why some people with sickle cell trait have complications and others do not.

What is outlook for children with sickle cell disease?  

Children with sickle cell disease can have episodes of pain that lasts hours or days; the disease can also cause damage to vital organs and increase the risk of serious infections, strokes, and other complications. Thankfully, the outlook for these children has improved significantly due to advancements in early diagnosis and treatment options.

Medications to reduce pain and prevent complications are available to help. For children with more severe forms of sickle cell disease, regular blood transfusions can also help relieve anemia. Today, other treatments are available to minimize complications and greatly improve quality of life and life expectancy. 

The average life expectancy for sickle cell disease patients has risen from less than 20 years of age in the 1970s to 42 years of age old for females and 38 years of age for males in 2005. Patients with milder forms of the disease may live twice that, according to a 2016 report.

Is there a cure for sickle cell disease?

Stem cell (bone marrow) transplants is the only cure for sickle cell disease. This treatment requires a donor with suitable bone marrow. Similar to other treatments, stem cell transplant has benefits and risks which should be discussed before proceeding. Other promising treatments being explored include gene therapy.  

A collaborative research effort led by the U.S. National Heart, Lung, and Blood Institute was created in 2018 to speed up the search for cures.

Chronic conditions

Siblings of Children with Chronic Illnesses or Disabilities

Parents are not the only ones who must adjust to a child’s illness or disability. Life changes for the entire family.

Parents have to pay extra attention to a child with a chronic illness or disability, and brothers and sisters may often feel neglected. They might also have difficulty learning to live with the stresses of having a sibling with a chronic health problem or disability.

How Siblings Might Feel:

  • Guilt that they are not sick (“Why him and not me?”)
  • Wonder whether they might have caused their sibling’s illness
  • Anxious about becoming sick themselves
  • Jealous and wish could become the center of the family’s attention
  • Angry if they are asked to assume more household chores than their sibling with a chronic health problem
  • Guilty when they resent the additional responsibility they are tasked with
  • Embarrassed or even angry when strangers stare at their brother or sister in a wheelchair, or when other children tease their sibling because he or she looks different

What Parents Can Do:

Be aware that while attending to the needs of your child with a chronic illness or disability, you may be neglecting – or creating unfair expectations for – your other children. At times, siblings may feel invisible unless they demand attention. However, siblings can learn to participate in the family and feel pride and love in helping their brother or sister with his or her health problem. The presence of a family member with a chronic illness provides opportunities for increased empathy, responsibility, adaptability, problem solving and creativity.

  • Try to establish some balance between the needs of your child with a chronic health problem or disability and those of your other children.
  • Spending some time with each child individually may help.
  • Develop a special relationship with each one of your children.
  • Keep in mind that siblings need to have honest information about the condition and to have their questions listened to and answered.

Signs Siblings Are Having Trouble:

When there is a child with a chronic illness or disability in your family, your other children may experience negative effects.

Warning signs the siblings of your child with a chronic health condition or disability may need some extra attention:

  • Anxious
  • Depressed
  • Withdrawn
  • Angry
  • Losing interest in friends
  • Doing poorly in school
  • Pushing too hard to achieve
  • Rebellious
  • Losing interest in activities that once brought pleasure, such as sports or music lessons
  • Acting out in other ways to get attention

If you are concerned, ask your child’s pediatrician for help. He or she can guide you to local psychologists, social workers, family therapists, child life specialists, and/or support groups for siblings of children with chronic health problems or disabilities. You should not expect or attempt to solve these concerns related to the siblings of your child with a chronic illness or disability by yourself.

Developing Resilience in Your Family:

Every family will learn how to embrace and show love for a child with a chronic health problem or disability. There is no right way or wrong way for siblings to live and grow together; rather, every family should strive for its own balance and determine what are some strategies and supports that help the child with chronic health problems and her siblings to thrive and be resilient.

The ultimate goal is to build internal strengths and coping skills in your child with a chronic health problem or disability and in all of the members of your family. Many factors will influence this process, including the course of the chronic condition and the external and internal supports and resources available to the child with special needs, her siblings, and the rest of the family.

While most families with chronic health problems or disabilities struggle through times of fear and despair, many also develop an internal resilience, a creativity, and a closeness or cohesiveness that helps the children with and without chronic health problems and rest of the family to manage and cope together with the many stressors that may develop over time. Often as a result of these experiences, adults and children learn about their strengths and limitations, talk more openly, and learn new ways to solve problems which fosters mastery and pride.

In the months and years ahead:

  • Continue to reassess the needs and goals for your child with chronic illness or disability, their siblings, and your family.
  • Be willing to learn new skills, search for supports and make changes as needed that serve both the child with the chronic health problem, their siblings, and everyone else in the family.
  • As much as possible, involve all of your children in shared decision making about any health care that affects them.
  • Stay informed and give yourself credit for all the hard work you and your family have done and the resiliency you have developed in your family.
Chronic conditions

Lupus in Children and Teens: Parent FAQs

Lupus in Children & Teens: Parent FAQs

Lupus is a condition that causes uncontrolled inflammation or swelling. It can affect many different parts of the body in unpredictable ways. Most people diagnosed with lupus are adults. However, childhood-onset lupus (meaning the disease develops before the age of 18) accounts for up to one one-fifth of lupus cases.

Read on to learn more about lupus in children and teens, and how help keep it under control.

What is lupus?

Lupus (systemic lupus erythematosus or SLE) is a chronic auto-immune disease. This means the immune system produces antibodies that attack healthy cells and tissues. Normally, our antibodies target foreign invaders like viruses or bacteria to keep us healthy—they do not normally target our own cells. The antibody attacks create inflammation that can cause damage to the skin, joints, and internal organs like the kidneys, brain, heart and lungs.

What causes lupus?

There is no known cause of lupus, but both genetic (hereditary) and environmental factors are believed to both play roles in developing lupus.

Who gets lupus?

Lupus more commonly affects females, although males can develop the disease as well. In fact, in childhood-onset lupus, the proportion of males affected is actually higher than it is in adults.

It is estimated that as many as 10,000 children in the United States are dealing with the disease. Lupus is more common in non-Caucasian children. Children with lupus may have a family member with lupus or another auto-immune condition.

What are the signs and symptoms of lupus?

Lupus can affect any part of the body, and each child may have different symptoms. The younger children are, the more aggressive lupus may be. Some symptoms may include:

  • Malar (“butterfly”) rash on face
  • Joint pain or swelling (arthritis)
  • Mouth sores
  • Bald spots (alopecia)
  • Fatigue
  • Weight loss
  • Fever
  • Chest pain
  • Shortness of breath

The kidneys are often inflamed in children with lupus, but this usually doesn’t cause symptoms unless the inflammation is severe. Your child’s pediatric rheumatologist will monitor your child for kidney problems frequently using blood and urine tests and checking blood pressure.

Besides kidney issues, other serious complications can develop. These include developing blood clots and inflammation in the central nervous system (brain or spine). Blood clots are most common in the legs and may cause pain, swelling, redness, or warmth. If the central nervous system is involved, your child may have headaches, seizures, or behavioral changes.

How is lupus diagnosed?

The diagnosis of lupus is not always straightforward and requires a thorough work-up with a pediatric rheumatologist. They will make a diagnosis of lupus based on your child’s symptoms, physical examination findings, and your child’s laboratory test results.

Laboratory test results in lupus may include:

  • Low numbers of white blood cells, red blood cells, and platelets
  • Elevated markers of inflammation
  • Abnormal kidney or liver function tests
  • Protein or blood in urine tests
  • Low complement levels (the complement system is a part of the immune system)
  • Positive antibodies such as ANA and anti-double stranded DNA

*NOTE: A positive ANA result without other signs, symptoms, or laboratory findings of lupus IS NOT an indication that a child has lupus. A positive ANA can be seen in a percentage of healthy children or when a child has a viral infection.

Is there a cure for lupus?

Although currently there is no cure for lupus, there are treatments​ that can help manage the disease.

Specialized care for lupus

Because lupus can affect so many organ systems, your child will likely see other specialists along with their pediatric rheumatologist. These specialists might include:

  • Pediatric nephrologists (kidneys)
  • Pediatric dermatologists (skin)
  • Pediatric hematologists (blood)
  • Pediatric pulmonologists (lungs)
  • Pediatric cardiologists (heart)

What are lupus flares?

Children with lupus may experience “flares,” a worsening of symptoms also known as exacerbations. These flares cause symptoms to get worse and they can be brought on by infections, excessive sun or ultraviolet (UV) light exposure, or when your child is tapering off lupus medications.

How do I manage my child’s lupus?

If your child is diagnosed with lupus, your child’s rheumatologist will prescribe medications to help manage symptoms and keep the immune system from overreacting

Along with medications, there are other things you can do to help keep your child’s symptoms at bay. For example:

Limit sun exposure. Since sunlight (UV light) can worsen lupus symptoms, it’s important for your child to wear sunscreen daily (make sure it’s SPF 30 or higher) and to wear hats, long-sleeved shirts, and pants when they are in the sun.

Maintain a healthy lifestyle. Some medications may cause weight gain, so eating a healthy, balanced diet and getting regular physical activity are crucial. A healthy lifestyle can also increase your child’s energy, help them sleep better, and boost their mood.

Avoid infections. People with lupus are immunosuppressed, which means their immune system has difficulty working. This can be either from the lupus itself or from medications. Because of this, children with lupus may be more prone to getting infections than other kids, so it’s extra important to encourage good hand-washing and to stay away from sick people. If your child develops a fever of 100.4 degrees or more or develops symptoms of an infection, be sure to let their pediatric rheumatologist know right away.

Keep vaccinations current. It’s important to keep your child’s vaccinations up to date, but keep in mind that people who are immunosuppressed shouldn’t receive live (activated) vaccines. Check with your pediatrician and pediatric rheumatologist if you’re not sure about the type of vaccination your child needs.

To keep your child healthy, additional vaccinations that aren’t part of the regular vaccination schedule but prevent other infectious diseases are also recommended. These include the annual influenza vaccine (inactivated form) and the pneumococcal vaccine.

How else can I help my child with lupus?

Living with lupus doesn’t mean that your child can’t lead a normal life. In fact, kids with lupus are encouraged to continue living like they normally would.

Your child may require a 504 plan for school that will allow them certain accommodations if needed. Contact your child’s school district to learn more about this.

Since lupus is a disease that affects multiple organ systems, your child may have to see many different types of specialists, which can cause them to miss school. You can work with your child’s school and pediatric rheumatology team to try to coordinate avoiding multiple absences.

Chronic conditions

Living with a Chronic Illness or Disability

Our child has a chronic illness or disability. How can we help him learn to live as best as he can with his condition?

When you first learn that your child has a disability or a chronic illness, the news is often unexpected and can seem devastating. Many families experience a sense of powerlessness in the beginning at the prospect of dealing with a chronic illness, health problem, or disability and often feel very stressed at facing a future filled with unknowns.

Knowledge Is Power

As a first step, it is important for you and your child to try to understand your child’s special needs, and try to find out as much as you can about her condition and its care. The more information parents and children have, the less frightening the present and future will seem. Knowledge is empowering. It can help both you and your child feel more in control of the condition and the impact and effects on your child’s life and on your family.

Information will also help you plan, guide and advocate for and with your child. Over time, you can teach him (if possible) to manage his own condition and learn to be his own advocate through the potentially complicated pediatric and adult health care and educational systems.

Informing Your Child about His Condition

The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.

  • Studies show, for instance, that kindergarten-age children typically view illness as quite magical: One child, when asked “How do you get better from an asthma attack?” simply responded, “Don’t wheeze.”
  • Young children who have diabetes may sometimes believe their illness is because of eating too much candy. Some children believe they have become ill and been hospitalized as punishment for not listening to their mother or father.
  • Beginning at about ages 10 to 12, children begin to grasp the complex ways that things can cause or be a factor in a disease or disability. By the fourth grade, children tend to believe that germs cause all illness. These older children may be capable of understanding more factual information about their condition.

Remember that as children grow up, their ability to understand information and take responsibility for their own care increases. Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly. All too often, the explanations and details about the condition discussed with a child and youth stop at the time of diagnosis

Helping Your Child Manage Stress

Stress is a part of life. It motivates us to succeed, but it can also interfere with life’s joys and accomplishments. Children with chronic illnesses and disabilities often deal with more stress than other children. For example, they may have to cope with an imperfect body, frequent hospitalizations, painful injections, surgery, or even premature death.

A child with kidney disease who requires dialysis three times a week has regular and repeated periods of stress to address. A child with cancer, who must undergo repeated chemotherapy, often has to manage the fears and anxieties of each future treatment. A child with epilepsy may feel anxious about the possibility of having another seizure.

Unfortunately, there are no simple ways to help your child avoid these stresses.

Suggestions to Reduce the Negative Impact or Effects of These Stresses on Your Child:

  • Listen to your child. Whether she or he is feeling sadness, frustration, or rage, it is helpful for a child to express these emotions. A child should feel that she can share her thoughts and fears with you freely and without you overreacting or becoming upset. Ask how she is feeling if your child does not say anything. Be available and supportive. Listen not only to what your child says, but also try to hear what is left unspoken.
  • Inform your child about what lies ahead. Anxiety is often based on the unknown or on inaccurate beliefs about the future. Find out what your child does and does not know. Explain exactly what will happen during an upcoming doctor’s appointment or hospital visit; if you are unable to answer all your child’s questions, both of you should talk to the doctor. Do not expose a child to a frightening procedure unless she has been told about it ahead of time. Talking with other children who have gone through the same experiences can be very helpful.
  • “Rehearsal” can help children cope with new situations that appear frightening. Many hospitals can now arrange for children to spend time in the children’s ward before they undergo surgery or other procedures. These visits can make clear to children about what the hospital setting is like and what to expect.
  • Encourage your child to spend time with other children with a chronic illness or disability that is the same or similar to your child’s condition.
  • Frequently talk about the illness or condition so that your child feels comfortable being open about it.
  • Emphasize your child’s strengths and support efforts to develop new strengths – the things she can do well despite the condition.
  • Help your child feel that he can be in control of some aspects of each health care related event or situation. Try to find choices that can be given to him, such as which arm to have blood drawn from, when a procedure will occur, or what reward he will get for cooperating.
  • Call your pediatrician for an appointment if you have concerns about your child’s mood or behavior at home or school (i.e., sad, anxious, irritable, aggressive). Your pediatrician will want to talk with you and your child and determine if your child needs to be evaluated and treated by a therapist or counselor or other mental health provider.


Children’s capacity for independence varies from illness to illness and child to child and will steadily increase with maturity. If your child has diabetes, you may have to test her blood sugar level and make sure insulin injections are given regularly during her younger years. If she requires a special diet, you will need to supervise food choices and eating habits closely. At the same time, watch for signals from her that she is able to assume greater responsibility, and help her take on more of the management of the illness little by little as she gets older.

Some children avoid accepting more independence and self-management of their condition. Families may not mean to but foster dependency because they find it easier to maintain responsibility for their child’s care, rather than teaching the child to perform certain tasks and relying on her to do so. Also, some children may enjoy being the object of their parents’ special attention. They may relish having certain tasks’ performed for them, and may resist taking responsibility.

It is critical to help your child come to terms with his health condition and accept developmentally and age appropriate responsibility for caring for himself. Try not to deprive your child of the important and rewarding experience of mastering day-to-day tasks; it instills pride and self-confidence that prepares him for adult life. Praise his efforts at assuming responsibility, and applaud yourself for having the wisdom and courage to let him take these very important steps.

Self-management skills should also be more formally assessed and encouraged in youth starting at age 14 years of age with your child’s pediatrician. Youth should help develop a shared medical summary and emergency care plan with their health care providers and develop linkages to any needed community-based supports. Parent and youth should also begin to address issues of legal decision-making and guardianship as appropriate with their providers starting at age 16 years of age. Youth and families should also ask about options for adult health care providers and the process for transferring care.

Your Pediatrician Can Help

Discuss any of your concerns and any limitations with your child’s pediatrician. Using your doctor’s input, develop some guidelines for sensible restrictions if needed while also encouraging your child to participate in a diversity of activities and gain more responsibility for their care. Parents need to recognize their children’s changing needs and to plan for them. It is also important for parents to be educated and up-to-date about their child’s illness or disability and about new treatments and their effects.

Most children with chronic illnesses or disabilities do well in school, develop appropriately and achieve their goals in much the same way that other children do. Most are healthy children who happen to have a chronic illness or disability. While their illness may create certain difficulties, with the support of their parents and other community based services as needed most lead happy, effective and exciting lives and grow up to become productive adults.