Category: Chronic conditions

Juvenile idiopathic Arthritis (JIA) is a chronic form of arthritis that affects children and teens. There are multiple types of arthritis that can affect young people, but JIA is the most common.

​The majority of children diagnosed with JIA are between ages 2 to 5 years old. ​However children can be diagnosed with JIA as young as 18 months and as old as 16 years.

What causes JIA?

This is a great question that, unfortunately, does not have a perfect answer. What we do know is that in children with JIA, the immune system causes inflammation in joints. What we do not know yet is why. It is likely that multiple factors can contribute to developing JIA. Some children may have been exposed to an illness, a certain medication or something else in their environment that triggers the immune system. Once the immune system is active, it can attack joints by mistake. The trigger is usually never identified.

Some children may be more likely to develop arthritis because of the genes they inherited from their parents. It is important for children with JIA and their parents to understand that there is not anything you can do to prevent JIA from developing.

What are the symptoms of JIA?

For the most part, JIA symptoms affect only a child’s joints and not other organs such as the heart, kidneys, lungs and intestines. The most common joints to be affected by JIA are the knees, ankles, wrists, elbows and small joints in the hands. The symptoms of JIA may vary depending on the child’s age and the type of JIA. However, there are some symptoms that are common among all children.

• Swelling is the most common symptoms and almost always seen in joints with arthritis. The swelling is limited to just the joint (not the whole foot or arm, for example). It will not come and go over the course of the day. It persists and will slowly get worse over time.
• Stiffness is usually worst in the morning or after being inactive for a long time (such as sitting in class or long car rides). Stiffness usually improves throughout the day or with activity. In some children with arthritis, stiffness limits their ability to completely straighten or bend a joint.
• Pain in joints with arthritis mostly happens in the morning and can improve with activity, just like stiffness. For most children with JIA the pain is mild. They may not complain of any pain, especially early in the disease process. Some joints may be more painful than others.
• Limping is a result of arthritis affecting the knees, ankles, feet or hips. This is a common early symptom of arthritis, especially in young children who are not able to describe their other symptoms well.
• Change in function such as trouble using crayons, not holding a fork normally, or not playing or climbing may be a sign of arthritis. Many children find a way to make up for their stiffness and pain, and learn how to do certain activities a different way.

How is JIA diagnosed?

The diagnosis of JIA is made based on a careful physical exam and review of the child’s symptoms and medical history. In some cases, blood work and imaging (x-ray, ultrasound, MRI) tests may be needed. In many patients, lab tests may be normal, however. It is important to know that there are no labs that diagnose JIA.

Is all JIA the same?

Not all cases of JIA are the same. There are certain features that may provide an idea of what symptoms to expect, and how severe they may be for a child. For example:

• Children with multiple joints involved, those with arthritis that affects the hip, ankle or wrist, or who have joint damage that can be seen on x-rays are likely to have more challenging cases of JIA. Children with these symptoms are more likely to need more aggressive treatment, and often longer courses of treatment. This also includes children with a positive Rheumatoid Factor (RF) in their blood work. This is rare, though.

• Some children with JIA develop dactylitis which is when a finger or toe is swollen and red (sometimes called “sausage-like” swelling). These children are more likely to develop psoriasis later in life.
• Children with a specific genetic marker called HLA-B27 are more likely to develop inflammation in their sacroiliac joints, where the base of the spine connects to the hip bones. This can cause stiffness and pain in the lower back. It is more common in older children and boys.

What are the treatment options for JIA?

The treatment of JIA is centered on controlling abnormal inflammation in joints. It is important to work with a pediatric rheumatologist​ who understands your goals to create a treatment plan that is right for you and your child.

Some children can be treated by injecting a steroid into the joint or joints with arthritis. For many, treatment will require a medication that targets the immune system. As researchers work towards understanding immune system triggers and how they cause inflammation, our treatments have become more targeted and specific. Many of the newer medications for JIA use “biologic” ways to treat the disease, such as helping the body block signals that lead to inflammation.

In addition to medicine, treatment of JIA often involves physical therapy. This can help a child regain their normal range of motion in joints. Physical therapy can also help strengthen muscles that may have become weak when the child’s swollen and sore joints prevented normal activity.

What is uveitis and why do I see an ophthalmologist?

Uveitis is a type of inflammation inside the eye. About 10-20% of children with JIA will develop uveitis. Unfortunately, there are often no symptoms until the inflammation has already caused damage. To help catch and treat uveitis before there is damage, children with JIA need to see an ophthalmologist for frequent screening eye exams.

Does JIA ever go away?

For some children, yes. This is called remission. For some children, arthritis will go into remission only to come back months to years later. It is difficult to predict which children will go into permanent remission and which children will need to continue treatment into adulthood. Fortunately, advances in the treatment and monitoring of JIA have improved the prognosis for all children.

The stress of a serious illness, chronic health condition or disability in a child often causes problems in a family. It is worse when each parent or adult caregiver attempts to deal with their own fears and frustrations related to the chronic health condition or disability alone and without support.

In some instances, parents become consumed with the care of their child with a chronic illness or disability, at the expense of nearly everything else in their lives. In these situations, they may find themselves almost constantly looking for new options, reading about alternative treatments, and thinking about the future. They may ask themselves questions such as:

• “Is there a better medication for my child?”
• “Is it worth getting another doctor’s opinion?”
• “Can I be doing more?”

Demands on the parent

Parents might feel that the demands upon them have no end (such as trips to the doctor’s office or preparation of special meals). Parents may feel constantly tired and never able to find energy to do anything else. Time spent with a spouse and one’s own personal interests and hobbies is often given up.

How families can thrive

However, families can also thrive as they embrace and love a child with a chronic illness or disability. A child with health problems may bring parents and other family members closer. Families—especially those who communicate openly—may be strengthened by experiences associated with managing their child’s health condition or disability. In many cases, the family’s management of a child’s chronic condition may provide them with a sense of cohesiveness, mission, mastery, and pride which builds the resiliency of the family.

Who can help

You should not expect or attempt to solve all family problems associated with your child’s illness or disability by yourself. It is important not to isolate yourself as a parent or caregiver of a child with a chronic health condition or disability.

Pediatricians, psychologists, social workers, family therapists, and parents of other children with chronic illnesses and disabilities are very important resources for helping to work through family problems. Ask for help.

Social networks can also be valuable sources of support for you in your community. Examples include condition specific support groups, faith based groups, extended family and friends.

Influenza (flu) is an infection of the nose, throat and lungs caused by the influenza viruses. It can cause mild to severe illness, pneumonia, and other complications.

Children younger than age 5, but especially children younger than 2 years old, and children and adolescents with chronic health conditions are at greater risk for serious flu complications. These flu complications can result in hospital stays and even death. The best way to prevent the flu is by getting a flu vaccine each year.

How do I know if my child is at greater risk for flu-related complications?

Your child is at higher risk if they have any of the following conditions:

• Asthma
• Neurological and neurodevelopmental conditions including disorders of the brain; spinal cord; peripheral nerve and muscle. Examples include cerebral palsy, epilepsy (seizure disorders), stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy or spinal cord injury
• Chronic lung disease (such as cystic fibrosis, or chronic lung disease of prematurity)
• Heart disease (such as congenital heart disease and congestive heart failure)
• Blood disorders (such as sickle cell disease)
• Endocrine disorders (such as diabetes mellitus)
• Kidney disorders
• Liver disorders
• Obesity (childhood obesity is defined as a body-mass index at or above the 95th percentile, for age and sex)
• Metabolic disorders (such as inherited metabolic disorders and mitochondrial disorders)
• Weakened immune system due to disease or medication (such as children or adolescents with HIV or AIDS, cancer, bone marrow or solid organ transplantation or those on chronic steroids or other immune suppressive treatment)
• Receiving long-term aspirin therapy for chronic disorders
• Pregnancy

What are symptoms of the flu?

Symptoms of the flu can include:

• Fever*
• Cough
• Sore throat
• Runny or stuffy nose
• Body aches
• Headache
• Chills
• Fatigue
• Sometimes vomiting and diarrhea

*It is important to note that some people sick with flu may not have a fever.

What is a flu complication?

Most people who get the flu will recover in a few days to less than 2 weeks, but some people will develop complications because of the flu, some of which can be life-threatening and result in death.

Pneumonia, bronchitis, and sinus and ear infections are examples of complications from the flu. The flu can also make chronic health conditions worse. For example, people with asthma may experience asthma attacks while they have the flu.

How can I protect my child against the flu?

• Flu vaccines: The most important thing is for your child to get a flu vaccine every year. Children younger than 6 months are at high risk of serious flu illness, but are too young to be vaccinated. People who care for them should be vaccinated instead in order to protect them. When a pregnant woman is vaccinated, the antibody produced in response to the vaccine also offers protection to the developing baby.
• Distance: Your child should avoid close contact with people who are sick.
• Hand washing: Wash hands often with soap and running water (as long as it takes to sing the “Happy Birthday” song twice). If soap and water are not available, use an alcohol-based hand sanitizer. Help your child wash their hands if needed.
• Germ control: Encourage your child to avoid touching their eyes, nose, mouth, and to use a tissue or elbow to cough or sneeze into.
• Cleaning: Keep surfaces in the house and toys clean by wiping them down with a household disinfectant according to the directions on the product label.
• Health: If your child has a chronic health condition, make sure that it is under the best control.
• Plan: Have a plan in case your child becomes sick with the flu.

What can I do if my child gets sick?

• Doctor: Call or take your child to the doctor if your child develops flu-like symptoms. The doctor may want to begin antiviral drugs as quickly as possible. Antiviral drugs are prescription medicines that fight against the flu in your body.
• Home care: Excluding doctor visits, keep your child at home until they no longer have a fever for at least 24 hours and are feeling more like themselves.
• Covering coughs: Ensure that your child covers coughs and sneezes.
• Rest and fluids: Make sure your child gets plenty of rest and drinks fluids to keep them from becoming dehydrated.
• Medicines: Ask your doctor about fever-reducing medicines based on your child’s age. Children younger than 4 years of age should not be given over-the-counter cough/cold medicines without approval from a health care provider. Aspirin should not be given to children or teenagers who have the flu; this can cause a rare but serious illness called Reye’s syndrome. Remember that the fever helps your child fight the infection, so it is not always necessary to give fever-reducing medicines.
• Sick room: Keep your sick child in a separate room (sick room) in the house. Limit as much contact as possible with other members of the household who are not sick. Make one person in the house the main caregiver for the sick child.
• Protect pregnant women: Pregnant women should get a flu shot. If possible, pregnant women should not be the main caregivers of a child with the flu until they recover.

When can my child go back to school after being sick?

Usually, your child should stay home for at least 24 hours after the fever is gone. A fever is defined as 100.4° F/38.3° C or greater. The fever should be gone without the use of a fever-reducing medicine.

Is the flu vaccine safe for my child with chronic health problems?

Yes. The flu vaccine that is given as a shot is approved for use in children 6 months and older, including both healthy children and those with chronic health problems. Because children with chronic health conditions are at a higher risk of getting flu related complications, it is especially important that they get a flu shot.

What types of vaccine should my child receive and how many doses?

Children with or without chronic health conditions should get the flu shot (inactivated flu vaccine) only. Children 6 months to 8 years old may need 2 doses of the vaccine. Children 9 years of age and older need only one dose. Talk with your doctor to discuss how many doses are recommended for your child.

How can I plan ahead with my child’s school or child care?

Find out your child’s school or child care providers plan for flu season. Let them know your child is at high-risk for flu related problems.

The American Academy of Pediatrics and the Centers for Disease Control and Prevention recommend that all children 6 months and older, especially those with chronic health conditions, get a seasonal flu vaccine.

Exercise is a way for children to keep fit, have fun, build self-esteem, and re­late to other children. Even children with a serious chronic disease can enjoy the benefits of participating in safe and appropriate physical activity.

Talk with your pediatrician about whether restrictions are necessary for your child with a chronic illness; if they are, explain the situation fully to your youngster before imposing them. Obviously, she should not be in an athletic environment where her limitations place her in danger or significantly limit her opportunity to have some success. Nearly every child can find an appropriate level of activity in which she can participate successfully and without frustration, while developing muscle strength and coordination. Every child should be encouraged to become as active as possible.

Most chronic health problems actually require few, if any, restrictions. Chil­dren with asthma, for example, can usually participate in sports, although they may have to follow carefully their doctor’s guidelines for medication ad­ministration before exercising. Youngsters with well-controlled seizure disor­ders can enjoy nearly all sports, from baseball to basketball to soccer— although if a child has occasional seizures, it is probably sensible to avoid ac­tivities such as rope climbing, high diving, and workouts on parallel bars, where a fall could cause a serious injury; while swimming, these children should be supervised by an adult who is in the water with them.

Children with heart disease or high blood pressure can participate in most sports, although your child’s cardiologist may have specific recommendations about how strenuous an activity should be. Youngsters with musculoskeletal problems like scoliosis can also lead an active life, as can most children with rheumatoid arthritis.

Some youngsters have impaired, uncorrectable vision in one eye. In these cases, talk to an ophthalmologist about protecting the good eye from injury. Special protective eyewear may be suggested. Children who participate in sports where eyes are frequently injured, such as baseball, racquetball, and handball, are also advised to use protective eyewear.

The Special Olympics program offers unique, exciting experiences for dis­abled children, providing opportunities for physical fitness, competition, and enjoyment. Through their participation, children can enhance their self-esteem, and parents can connect with a valuable support system.

​The term fetal alcohol spectrum disorders, or FASDs, describes a broad group of conditions that an individual can have as a result of prenatal alcohol exposure. Alcohol alters the development of the brain and many other body organs of the developing fetus. People with FASDs show a combination of physical, emotional, behavioral, and learning issues that range from mild to severe. Each person with an FASD has their own unique combination of signs and symptoms.

The term FASD includes all of the following conditions:

• Fetal alcohol syndrome (FAS)
• Partial fetal alcohol syndrome (pFAS)
• Alcohol-related birth defects (ARBDs)
• Alcohol-related neurodevelopmental disorder (ARND)
• Neurobehavioral disorder associated with prenatal alcohol exposure (ND-PAE)

How common are FASDs?

The exact number of children who have an FASD is difficult to determine. Some experts estimate that approximately 40,000 babies may be born with an FASD in the United States each year. Based on studies of the Centers for Disease Control and Prevention (CDC) and others, it is estimated that in the United States, somewhere between 800 and 8,000 babies could be born each year with FAS.

Can a father’s use of alcohol lead to FASDs?

No, a father’s use of alcohol cannot lead to FASDs. FASDs can only happen when a pregnant woman consumes alcohol. However, it is important for the father of the baby or the supportive partner to encourage the pregnant woman to abstain from alcohol throughout the pregnancy.

How are FASDs prevented?

FASDs are 100% preventable. The only sure way to prevent FASDs is to completely avoid alcohol use while pregnant. Because damage from prenatal alcohol exposure can occur even during the earliest weeks of pregnancy often before a woman realizes she’s pregnant, women who are trying to get pregnant or who could get pregnant also should avoid alcohol.

• There is no amount of alcohol during pregnancy that is risk-free
• There is no kind of alcohol during pregnancy that is risk-free
• There is no time during pregnancy when alcohol consumption is risk-free

What is considered “a drink”?

In the United States, a “standard drink” is defined for as any alcoholic beverage that contains 0.6 fluid ounces (14 g) of pure alcohol. In general, the means 12 oz of beer, 4 oz glass of wine, or 1 oz shot of hard liquor are each one standard drink. Mixed drinks or alcohol served in restaurants/bars often contain more than one standard drink.

Is there is a safe amount of alcohol consumption during pregnancy?

There is no safe amount of alcohol when a woman is pregnant. Research evidence indicates that even drinking small amounts of alcohol while pregnant can lead to:

• Miscarriage
• Stillbirth
• Prematurity
• Sudden infant death syndrome

Does more drinking cause more harm?

The more alcohol a woman drinks the higher the risk is for the developing fetus to have alcohol-related brain and organ damage. Binge drinking (having four or more drinks at one time) is the worse pattern of drinking. However, even low to moderate amounts of alcohol can have adverse effects on the developing fetus’s brain and organs. Thus, the best advice is to abstain from drinking alcohol while pregnant.

Is there any kind of alcohol that is safe to drink during pregnancy?

There is no safe type of alcoholic beverage to consume while pregnant. For example, red wine is no safer than white wine, beer, or mixed drinks, since all contain alcohol.

Is there a safe time during pregnancy when a woman can drink alcohol?

No, there is no point during pregnancy when drinking alcohol is considered safe. Adverse effects from alcohol can happen at the earliest stages of pregnancy to the developing fetal brain, even before a woman realizes she’s pregnant. Because different aspects of the child are developing at all stages of pregnancy, alcohol’s effects on a developing baby can result from alcohol use at any point during pregnancy. Alcohol is a known neurotoxin, so since the brain develops throughout pregnancy, the developing brain and nervous system are always at risk.

What do I do if I did not know I was pregnant and have been drinking?

Stop drinking as soon as you find out you are pregnant. This is the best thing you can do for yourself and your baby. In general, babies of mothers who stop drinking do better than babies of mothers who continue to drink. In addition, make sure you get regular prenatal checkups and discuss your alcohol use with your health care provider. Don’t hesitate to ask for advice, especially if you think you might have difficulty stopping your use of alcohol. A wide variety of referrals and resources are available. Please see below.

If I drank when I was pregnant, does that mean my baby will have an FASD?

Not necessarily, because every pregnancy is different. Which babies will be affected from prenatal alcohol exposure varies based on genetics, nutrition, environmental factors, and other exposures like cigarette smoking. It is hard to predict which babies will be affected and how severely they will be affected from prenatal exposure to alcohol. Discuss your FASD concerns with your child’s health care provider and be sure to tell to be honest about your alcohol usage. There is no blame or judgement, you just want to have your baby get the care they need.

Is it okay to drink alcohol if I am trying to get pregnant?

No, it is not okay to drink alcohol while trying to get pregnant. When a woman is trying to get pregnant, she might already be pregnant and not know it for up to 4 to 6 weeks. This means that if she is drinking alcohol, she is also exposing her fetus to all the alcohol-related risks. A woman also is at risk for other adverse reproductive outcomes such as miscarriage. Therefore, the best advice is to stop drinking when you start trying to get pregnant. 

Why should I worry about alcohol use if I am not pregnant and not trying to get pregnant?

Half of all pregnancies in the United States are unplanned. The best way to prevent unplanned pregnancies beyond abstinence is by being on effective birth control. 

Can my child get an FASD if I drink while breastfeeding?

No, because FASD are the result of prenatal alcohol exposure. Still, it is a good idea to limit alcohol consumption while providing breast milk to your baby because alcohol can pass through your milk to your baby. Drinking beer does not increase your milk supply, as urban myth suggests. In fact, consuming alcohol of any kind may decrease the amount of milk your baby drinks. Alcohol can change the taste of your milk, and this may be objectionable to some babies.

If you are going to have an alcohol containing beverage, it is best to do so just after you nurse or pump milk rather than before. Breastfeeding or pumping breast milk is ok 4 hours after your last drink. That way, your body will have as much time as possible to rid itself of the alcohol before the next feeding and less will reach your infant

There are concerns about long-term, repeated exposures of infants to alcohol via the mother’s milk, so moderation is advised. Chronic consumption of alcohol may also reduce milk production.

How are FASDs diagnosed?

Diagnosing FASDs can be difficult because, there is no single or simple test that can cover the broad range of FASD signs and symptoms. A pediatric medical home provider and/or other pediatric or developmental specialists usually make the FASD diagnosis after one or more appropriate evaluations. Be sure to ask your child’s pediatrician if you are worried he or she may have an FASD and need further evaluation.

Certain physical findings, developmental problems, behavioral concerns, or school failure should trigger the parents and the pediatric medical home to consider FASDs as potential diagnoses. Children with an FASD can have brain abnormalities that lead to problems in day-to-day functioning despite having a normal IQ, so a comprehensive evaluation is indicated.

All children with involvement in foster care or adoption processes―especially international adoptions―should always be evaluated for a possible FASD.

Is there a cure for FASDs?

FASDs last a lifetime. There is no cure for FASDs but identifying children with FASDs as early as possible can help them reach their potential. Research has shown that early identification and enrollment in treatment can significantly improve an affected child’s development and life.

Are there treatments that help with FASDs?

Treatments have been shown to help, but no one treatment is right for every child since one FASD differs from another. FASDs need a medical home to provide, coordinate, and facilitate all the necessary medical, behavioral, social, and educational services.

Many types of treatment are available, including:

• Developmental services
• Educational interventions
• Behavior modification
• Parent training
• Social skills training
• Medications and other medical therapies
• Transition planning
• Advocacy in school and the workplace
• Referral for community support services
• Coordination across the specialists, partners, and needed supports
• Primary care in a high-quality medical home setting with care integration

Treatment plans should be adaptable to the child’s and family’s needs, plus include close monitoring and follow-up.

Are FASDs genetic or hereditary?

There is no evidence that FASDs are genetic or hereditary. FASDs can only happen if a woman consumes alcohol during a pregnancy. A woman who has an FASD does not have greater risk of having a child with an FASD unless she consumes alcohol during her pregnancy.

However, individuals with FASDs are at increased risk for substance use and other secondary conditions associated with FASDs. For these reasons, a woman who has an FASD herself can indeed be at increased risk for having a child with an FASD.

What if my doctor tells me it is okay to drink during pregnancy?

Your doctor is not giving you advice based on the best and most recent research available. Your doctor should know that every major medical organization in the United States, including the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, the American Academy of Family Physicians, the US Surgeon General, and the CDC, agree and consistently state that the best advice is for women not to drink alcohol while pregnant or trying to become pregnant.

• There is no amount of alcohol during pregnancy that is risk-free.
• There is no kind of alcohol during pregnancy that is risk-free.
• There is no time during pregnancy when alcohol consumption is risk-free.

What if my biological child is diagnosed with an FASD?

Discuss all your questions and concerns with your child’s medical home provider and other specialists caring for your child. You may need reassurance as a parent and may benefit from greater personal and emotional support. There may be a support group to which your child’s doctor can refer you, or you can find one through your community, church, or school system.

The National Organization on Fetal Alcohol Syndrome has a Circle of Hope/Birth Mother’s Network that can be contacted in person or online.

Any continued alcohol use should be discussed regarding your own safety and that of future pregnancies.

Fetal alcohol spectrum disorders (FASDs) is an umbrella term used to describe the range of effects that can occur in an individual with prenatal alcohol exposure. These effects can have lifelong implications including physical, mental, behavior, and/or learning issues.

The exact number of children who have an FASD is difficult to determine. Some experts estimate that approximately 40,000 babies may be born with an FASD in the United States each year. Based on studies of the Centers for Disease Control and Prevention and others, it is estimated that in the United States, somewhere between 800 and 8,000 babies could be born each year with fetal alcohol syndrome (FAS).

Conditions on the FASD Spectrum

The term FASD encompasses a number of conditions:

Fetal Alcohol Syndrome (FAS)

FAS is on the most severe end of the FASD spectrum. It describes people with the greatest alcohol effects, causing signs and symptoms so distinct that the diagnosis is based on special measurements and findings in each of the 3 following areas:

• Three specific facial abnormalities: smooth philtrum (the area between nose and upper lip), thin upper lip, small palpebral fissures (the horizontal eye openings)
• Growth deficit (lower than average height, weight or both)
• Central nervous system (CNS) abnormalities (structural, neurologic, functional, or a combination of these)

Partial fetal Alcohol Syndrome (pFAS)

When a person does not meet the full diagnostic criteria for FAS but has a history of prenatal alcohol exposure and some of the facial abnormalities, as well as a growth problem or CNS abnormalities that person is considered to have partial FAS (pFAS).

Alcohol-Related Neurodevelopmental Disorder (ARND)

People with ARND do not have abnormal facial features or growth problems, but do have problems with how their brain and nervous system were formed as well as how they function. These individuals may have:

• Intellectual disabilities
• Behavior or learning problems
• Nerve or brain abnormalities

In particular, a 2011 federally convened committee that reviewed the science noted that these children are most likely to have problems with neurocognitive development, adaptive functioning, and or behavior regulation.

Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)

In addition to confirmed prenatal alcohol exposure, these individuals have impairment of neurocognition, self-regulation, and adaptive functioning. ND-PAE combines deficits is these three areas in conjunction with the following:

• Evidence of prenatal alcohol exposure
• Childhood onset of symptoms
• Significant distress or impairment in social, academic, occupational, or other important area of function

Alcohol-Related Birth Defects (ARBD)

People with ARBD have problems with how some of their organs were formed and or how they function, including:

• Heart
• Kidney
• Bones (possibly the spine)
• Hearing
• Vision

These individuals also may have one of the other FASDs.

Cause

FASDs can happen only when a pregnant woman consumes alcohol. The alcohol crosses the placenta and enters the baby’s blood where it can damage the developing brain and other organs leading to an FASD. FASDs are 100% preventable if a woman does not drink alcohol during pregnancy.

Diagnosis

It is difficult to diagnosis FASDs, because there is no single or simple test that can cover the broad range of FASD signs and symptoms. Certain physical findings, developmental problems, behavioral concerns, or school failure should trigger the parents and or the pediatric medical home provider or other pediatric developmental specialist to consider FASDs as potential diagnoses, especially in the context of exposure to prenatal alcohol. A known history of alcohol consumption during the pregnancy aids in diagnosis but is not required for diagnosis of an FASD.

Children with an FASD can have brain abnormalities that lead to problems in day-to-day functioning despite having a normal IQ, so a comprehensive evaluation is indicated. All children with involvement in foster care or adoption processes―especially international adoptions―should always be evaluated for a possible FASD.

Treatment

No one treatment is right for every child, as FASD and its constellation of symptoms differ from one child to another. FASDs need a medical home to provide, coordinate, and facilitate all the necessary medical, behavioral, social, and educational services.

Many types of available treatments include but are not limited to:

• Developmental services
• Educational interventions
• Behavior modification
• Parent training
• Social skills training
• Medications and other medical therapies
• Transition planning
• Advocacy in school and the workplace
• Referral for community support services
• Coordination across the specialists, partners, and needed supports
• Primary care in a high quality medical home setting with care integration

Treatment plans should be adaptable to the child’s and family’s needs, plus include close monitoring and follow-up.

Outlook for Children with FASDs

FASDs last a lifetime. There is no cure for FASDs, but identifying children with FASDs as early as possible can help them reach their potential. Research has shown that early identification and enrollment in treatment can significantly improve an affected child’s development and life.

Parents in the throes of caring for a sick child, may not have that child’s future fertility and sexual function top of mind. However, a number of pediatric conditions and treatments can impact a child’s sexual function and ability to have future children of their own.

If you have a child with a chronic health condition, talk with your child’s doctors about these issues early so you understand the risks, if any, and options available. Some questions to ask may include:

• Does my child’s condition pose risks for their future fertility or sexual function?
• Will any of the treatments my child is undergoing today affect his or her future fertility or sexual function?
• Is there anything we should do now to protect or preserve my child’s fertility or sexual function?
• What information can I share with my child about future fertility or sexual function?

Tips for Talking with Your Child About Reproductive Health Issues:

The American Academy of Pediatrics (AAP) clinical report, Counseling in Pediatric Populations at Risk for Infertility and/or Sexual Function Concerns, explains how and why to have ongoing and developmentally appropriate conversations with your child about the potential for future infertility and sexual dysfunction.

Withholding information is not recommended. Studies in women with Turner syndrome, for example, show that a lack of communication about their condition can create tremendous distress later in life when infertility is discovered. The topic of future parenthood can and should be discussed in an age-appropriate manner. 

• Parents of infants/very young children: While fertility preservation options for infants and young children are experimental, it is important to know your options. Educate yourself. New fertility-related technologies and medical and surgical approaches to preserve or improve sexual function may emerge. Talk with your child’s health care team and connect with other families who have had similar experiences.
• School-aged children: Encourage your child to ask questions. Although detailed discussions about sex may not be appropriate at this age, children should feel comfortable asking about their bodies at home and at doctors’ visits. You might say, “How are you feeling about your body?” You might also try introducing the topic by saying, “There are many different ways to become a parent and have a family.” Check in with your child periodically as he or she grows and matures to see how much he or she understands, since awareness of fertility and sexuality increases with age.
• Adolescents and young adults: Like any teenager, your child may struggle with long-term decision making. However, he or she may wonder and worry about the impact of fertility and sexual impairment on future dating and forming romantic relationships. Be aware that your child may be more comfortable discussing these topics in private with his or her doctors―but parents can still be involved in  decision making.
  • Ask your child open-ended questions, but be specific about fertility, family building, and sexual function/health. These can be awkward conversations. Plain and simple. Try to create a safe and comfortable environment for discussions. Relevant topics may include anatomy, masturbation, erections, nocturnal emissions, sexual fantasies, sexual orientation, orgasms, sensation, and performance.
  • Do not assume your child is not involved in romantic relationships just because he or she has a chronic condition. Encourage your child to be open and honest with others about his or her illness if it is transmittable or requires daily or ongoing care. How the chronic illness may affect fertility or how it could be passed on to offspring should also be discussed. As your child enters young adulthood, accepting his or her own medical condition will be a key factor in his or her ability to disclose disease status to others.
  • Emphasize that it is still important to practice safe sex―even if your child is likely to be infertile. While potential infertility may cause distress and anxiety, unplanned pregnancies do happen among those who incorrectly assumed they were infertile. Contraception should be used to prevent unplanned pregnancy and sexually transmitted infections, including human papillomavirus infection.
  • Provide your with child psychosocial support. Teens with chronic conditions may need the help of a mental health professional to come to terms with their condition. It may take time for them to fully understand how their illness can impact relationships, intimacy, and self-esteem.

Preserving Your Child’s Fertility:

Technology to preserve fertility for future use―known as fertility preservation―is an emerging, evolving field and includes “freezing” sperm and eggs or preserving testicular or ovarian tissue.

Fertility preservation options are currently limited for infants and children who have not yet reached puberty, as well as those with fertility altering conditions such as genetic conditions and differences/disorders of sex development.

More Research is Needed:

Fertility impairment and sexual dysfunction can have a significant effect on quality of life. It can be challenging, at times, to find credible information about these topics; there is little research available on reproductive and sexual health outcomes for many conditions. Some examples include cancer treatments, hematologic or autoimmune conditions requiring bone marrow transplantation, renal and rheumatologic disorders in which alkylators are used, gender affirming hormonal therapy used in the care of transgender youth, differences/disorders of sex development, and other genetic syndromes such as galactosemia. (See table below). 

When possible, the AAP recommends helping children who may have preservation options, in a timely fashion and educating them on their fertility status, options down the road, and about sexual function and reproductive health in general. 

Diabetes is diagnosed through physical examination and thorough medical history, plus one of the laboratory procedures measuring the concentration of glucose in the blood.

“When I found out my child had a chronic illness, it seemed like the end of the world. I ached so bad and I felt so angry.”

Parents often experience an array of emotions as they come to terms with their youngster’s illness. Immediately after the diagnosis, many mothers and fathers enter a mourning period, grieving over the “loss” of their healthy child. They must cope with the shock and the pain and try to accept the new reality of having a youngster with a chronic illness. Parents often deny this reality and tell themselves things like “This can’t be happening… The laboratory must have gotten our test results mixed up with someone else’s. When am I going to wake up from this nightmare?” Eventually, parents usually begin to find ways to accept their child’s illness, despite periodically feeling sad, resentful, anxious, and angry.

Common Feelings of Parents of Children with Chronic Illnesses

Guilt is common among parents, often feeling that they somehow caused the illness. Self-blame is particularly prevalent when the condition was present at birth, has a genetic basis, and/or when the cause is not known. Guilt can be an excruciating and disabling emotion, adding to the stress within the family and sometimes making it difficult for parents to be supportive of their children and each other. If guilt or other emotional difficulties are interfering with your par­enting abilities or the quality of your family life, you may benefit from some professional counseling.

Negative	Positive
Anger	Achievement
Anxiety	Closeness
Embarrassment	Joy
Frustration	Love
Grief	Mastery
Guilt	Pride
Isolation	Self-Confidence
Powerlessness	Self-Esteem
Resentment	Strength
Sadness	Usefulness

Other adjustments may be necessary as well. There can be considerable fi­nancial cost associated with a child’s chronic illness. As medical bills mount—with frequent doctors’ visits, medications, hospitalizations, and other outpatient services—worry over finances can intensify.

Many parents find it to be very difficult to discipline their chronically ill child. However, all children need and benefit from having clear limits and consistent expectations. In their absence, children may become overly de­pendent, have lower self-esteem, and begin to have behavioral and social problems. Parents should establish a consistent set of expectations, adjusting them as needed for acute episodes as the child’s health fluctuates. They should provide an environment that encourages independence and self-confidence.

Sometimes a parent may have to give up a career or education to become the primary caretaker at home; this is particularly true when the child re­quires a great deal of assistance with daily activities. A parent may have to change jobs, or take on a second job, to increase the family income. These ad­justments are sometimes complicated when a new job necessitates switching health insurance policies, causing a situation in which medical bills associated with the child’s chronic illness (referred to as a pre-existing condition) are not covered. The family might also have to move, relocating closer to the medical services the child needs.

Several state and federal programs are available to help families with the costs of chronic health care. Recent changes in the eligibility criteria for Sup­plemental Security Income (SSI) for children, for example, now provide cash benefits to many families with children with chronic illnesses. Eligible young­sters generally include those with significant psychiatric conditions and se­vere chronic illnesses, such as cystic fibrosis, congenital heart disease, malignancies, and many others. Your physician or the social worker at your lo­cal hospital should be able to refer you to the proper agencies for help.

What is cystic fibrosis?

Cystic fibrosis (CF) is a disease that changes the secretions of certain glands in the body. It is inherited from parents who carry the gene that cause this disease. For a child to get cystic fibrosis, both parents must be carriers of the gene that causes it. Although the sweat glands and the glandular cells of the lungs and pancreas are affected most often, the sinuses, liver, intestines, and reproductive organs also can be involved.

Great progress has been made in treating this disease and its symptoms, but there is still no cure. However, children with CF are living longer, thanks to the scientific progress that has occurred.

Who Gets CF?

For a child to get cystic fibrosis, both parents must be carriers of the gene that causes it. In the United States, CF is most common in the Caucasian population, where 1 out of every 20 people is a carrier, and 1 of every 2,000 to 3,000 Caucasian babies have CF. The disease is much less common in African Americans (1 in 17,000 live births) and Hispanics (1 in 11,500 live births), and even rarer among Asians.

About 60,000 children and adults worldwide have been diagnosed with CF; approximately half of them (30,000) are in North America. In 1989 researchers discovered the gene that causes CF. Couples planning to have children can undergo genetic testing and counseling to find out if they are carrying the CF gene.

Signs and Symptoms

The majority of CF cases are diagnosed within the first two years of life; in many states, newborn screenings now include mandatory testing for CF. (CF can be diagnosed even before the baby is born with genetic testing as well as through detection of an abnormality found on an ultrasound in the later stages of pregnancy). Your pediatrician may suspect CF if your child is failing to gain weight, which often accompanies this disease. Other signs and symptoms vary with the degree of the involvement of organs like the lungs.

More than half of the cases of CF are diagnosed because of repeated lung infections. These infections tend to recur because mucus in the airways is thicker than normal and more difficult to cough out. A child with CF is likely to have a persistent cough that gets worse with colds. Since the secretions of the lungs remain in the airways longer than normal, the airways are more likely to become infected, increasing the chances of pneumonia or bronchitis. Over time, these lung infections cause damage to the lungs, and are the major cause of death in CF. Diabetes and chronic liver disease are other complications that may occur in children with CF.

Most children with CF are deficient in digestive enzymes, making it difficult for them to digest fats and proteins as well as they should. As a result, these children have large, bulky, foul-smelling stools. Loose stools may result from an inability to digest formula or food, and are one of the causes of the child’s failure to gain weight.

Diagnosis

To confirm the diagnosis, your pediatrician will order a sweat test to measure the amount of salt your child loses as he perspires. Children with cystic fibrosis have much more salt in their sweat than do children who do not have CF. Two or more of these tests may be required to ensure an accurate diagnosis, since the results are not always clearly positive or negative. If your child is diagnosed as having the disease, your pediatrician will help you get the additional specialized medical help that is necessary.

Treatment

Treatment of CF’s lung infections is the most important aspect of your child’s care. The goal is to help clear the thick secretions from your youngster’s lungs, which may involve various techniques that help him cough out the sputum more easily. The lung infections themselves are treated with antibiotics. Periods in which the lung infections worsen are called exacerbations, which are associated with more coughing and sputum production, and may require treatment with the use of intravenous antibiotics.

To treat the lack of digestive enzymes in CF, your child will be prescribed capsules containing enzymes to be taken with every meal and every snack. The amount of enzymes is based on the level of fat in the diet and the weight of your child. Once the correct amount of enzymes is taken, your youngster’s stool pattern will become more normal and he’ll begin gaining more weight. He also will need to take supplemental vitamins.

Emotional Burden of CF

Because CF is a hereditary disease, many parents feel guilty about their child’s illness. However, CF is a genetic disease that is no one’s fault, so there’s no reason to blame anyone. Instead, you should channel your emotional energies into your child’s treatment.

It is important to raise your child as you would if he did not have this disease. There is no reason to limit his educational or career goals. The majority of children with CF can expect to grow up and lead productive adult lives. Your child needs both love and discipline, and should be encouraged to develop and test his limits.

Balancing the physical and emotional demands created by this disease is hard on both the CF patient and his family, so it is very important that you get as much support as possible. Ask your pediatrician to put you in touch with the nearest CF center and CF support groups. The Cystic Fibrosis Foundation also can be of help.