Category: Chronic conditions

Denial

An example of denial in action is the teen with diabetes who wolfs down two pieces of birthday cake at a party, knowing full well that she’s going to regret it later; or the young person with hemophilia who insists on performing daredevil stunts on his dirt bike. But suppressing the reality of a health condition is also an effective coping strategy that allows people to go on living productively. Denial becomes a problem only when it leads to dangerous outcomes.

Intellectualization

This defense mechanism, seen mainly with younger adolescents, consists of partial denial. The teenager accepts her condition and often exhibits a firstyear medical student’s knowledge about it, but chooses to block out how she feels about it. Intellectualization can be useful when employed as a delay tactic; it gives the young patient time to sort out and deal with her emotions. But if it persists, the adolescent never truly comes to grips with her situation. She may also fall into a pattern of shutting out all uncomfortable feelings, at which point intervention from a health-care professional is certainly warranted.

Regression

When the going gets tough, even the most outwardly stoic youth may revert to childish behavior. Regression provides temporary escape from stressful situations. The proper parental response? Be firm about what you will and will not tolerate, but show plenty of caring and patience. In time, the young person will learn to cope with his circumstances in a more mature fashion.

Acting-Out Behavior

This is another short-term survival tool, frequently wielded like a battering ram. Defiance, combativeness and testing limits at home and at school are all expressions of a teenager’s anger and depression over his predicament: I’m furious that I have this stupid disease! And even though I know it’s irrational, Mom and Dad, sometimes I can’t help venting my rage in your direction. Acting-out behavior can be hurtful to anyone who stumbles into its path. It may also manifest in self-destructive ways, such as poor performance in school, experimenting with substances and/or sex and run-ins with the law. Involving a mental-health expert from the beginning can help to prevent things from spinning out of control.

What are the steps for clean intermittent catheterization for girls and boys?

If your child cannot empty his or her bladder completely, or has a problem with urine leakage, your child may need to start a catheterization program. These problems are commonly seen in children with spina bifida, spinal cord injuries, or some urinary tract defects.

The following information explains the steps for CIC. This should not take the place of one-to-one teaching. If your child needs CIC, contact your pediatrician, doctor, or nurse practitioner for more information.

CIC For Girls

• First wash your hands with soap and water, then dry them. You also can use a waterless cleaner, such as an antibacterial cleanser that does not require water.
• Next have your box of supplies within easy reach.
• Place your daughter on her back or position her on the toilet or in her wheelchair. You should practice CIC in the position you will be using most often. If she is on the toilet, separate her legs widely enough to be able to clearly see her urethra. If she is doing her catheterizations herself, she will practice identifying her urethra by touch. When your daughter is learning to catheterize herself, she can use a mirror to see where her urethra is located.
• Clean your daughter’s genitalia with a washcloth or disposable wipe.
• Separate the labia and wipe thoroughly from front to back.
• Place a generous amount of the water-soluble lubricant on the end of the catheter with the holes.
• Place the other end of the catheter into a container or let it drain into the toilet.
• Find your daughter’s urethra. Gently insert the lubricated end of the catheter into the urethra about 2 to 3 inches. It may become slightly more difficult to insert just prior to entering the bladder. That is because a muscle called the sphincter sits at the opening of the bladder and is naturally tightly contracted. The sphincter will relax as you continue to gently insert the catheter until you reach the bladder and see urine flow.
• Once the catheter is in the bladder, hold it there until the urine flow stops. Then move the catheter slightly, or insert it a little more, to see if the flow continues. Gently press on your daughter’s lower abdomen with your hand or ask your daughter to lean forward to be certain there is no more urine in the bladder.
• Slowly remove the catheter, holding your finger at the tip or pinching the catheter end before removing the final portion. Pull catheter out in a downward movement to prevent backflow of urine.
• Wash your hands. Clean and store your catheter as directed.

CIC For Boys

• First wash your hands with soap and water, then dry them. You also can use a waterless cleaner, such as an antibacterial cleanser that does not require water.
• Next have your box of supplies within easy reach.
• Place your son on his back or, if it is easier for both of you, have him sit on the toilet or in his wheelchair. If he is doing his own catheterization, he may stand or sit on the toilet or in his wheelchair.
• Clean the tip of his penis with a washcloth or disposable wipes in a circular motion starting at the center and working outward. If your son is uncircumcised, pull back the foreskin so that the tip of his penis is visible before cleansing.
• Place a generous amount of the water-soluble lubricant on the end of the catheter with the holes.
• Place the other end of the catheter into a container or let it drain into the toilet.
• Hold your son’s penis upright. Gently insert the lubricated end of the catheter into the urethra about 4 to 6 inches until urine begins to flow. You may need to lower the penis as you continue to insert the catheter. It may become more difficult to advance the catheter as you get closer to the bladder. Do not worry, this is normal. Continue to gently insert the catheter with steady pressure until you feel the catheter slip into the bladder. Once urine flow begins, insert the catheter about an inch farther to allow the urine to flow better.
• Hold the catheter in place until the urine flow stops. You may gently press on your son’s lower abdomen or ask him to squeeze his abdominal muscles or lean forward to be sure the bladder is empty.
• Remove the catheter once the urine flow stops completely. Hold your finger over the end of the catheter while removing it. This will prevent any urine in the tube from dripping out.
• If your son is uncircumcised, gently replace the foreskin over the end of his penis by pushing it forward.
• Wash your hands. Clean and store your catheter as directed.

Supplies Needed

It is best to have all of your supplies organized and ready when you need them. Keep the following items in a clean, dry container such as a plastic shoe box or cosmetic case.

• Catheters. Your doctor will give you a prescription for the appropriate catheter size for your child.
• Disposable wipes or a washcloth. Your child’s genitalia will need to be cleaned before CIC.
• Lubricant. Use only a water-soluble lubricant. You can buy the lubricant at pharmacies or drug stores. Do not use oil-based lubricants such as petroleum jelly because they do not dissolve in water.
• Container. You may need a container to drain the urine into if you are not doing the catheterizations on the toilet, or if you need to keep a record of how much your child drains.
• Syringe. You will need a syringe for cleaning the catheter.

My child has a chronic health condition. What do I need to tell the school?

If your child has special health needs, the school should have a written document outlining a health care and emergency plan.

The following information should be in the document:

• A brief medical history
• The child’s special needs
• Medicine or procedures required during the school day
• Special dietary needs
• Transportation needs
• Possible problems, special precautions
• Pediatrician’s name
• Emergency plans and procedures (including whom to contact)

Once the school is informed a student has a chronic health condition, a meeting is often scheduled to discuss what services may be needed. The meeting should include parents, the student (if old enough), school health staff, the coordinator of special needs services, student aids, and the child’s primary teacher. Health care providers, such as the child’s pediatrician, also should be invited or asked to provide information in writing.

One goal of this meeting is to develop a written plan that clearly describes the services the student needs. Depending on the child’s needs, this plan may be described as a 504 Plan or an Individualized Education Program (IEP). This legal document outlines exactly what services the child will receive and sets short- and long-term goals for the child. The plan should be reviewed regularly to ensure it continues to meet the child’s needs.

Parent Responsibilities

The following are ways you can help your child receive the education and services he or she needs to succeed in school:

• Talk to the school. Don’t be afraid to tell the school about your child’s condition. Some parents worry about sharing this information, but the more informed teachers and other school staff are, the better prepared they will be to help your child. If the school staff don’t have all the facts, they may make wrong assumptions about your child’s behavior or performance.
• Make an emergency plan. Ask your pediatrician to help you write down exactly what the school should do if your child has certain health needs. School staff should know how to reach you or your pediatrician in case there is an emergency. Remember to call the school right away when contact information has changed.
• Make a health plan. If your child takes medicine at school, ask about the school’s policies for storage and self-usage. Make sure your child is able to take her medicine in a comfortable place, and that the school is provided with an adequate supply. Remember to call the school right away if there are any changes in your child’s condition.
• Give your consent. You will have to sign a release form that gives the school permission to contact your pediatrician. Also, your pediatrician will need your written permission to discuss your child’s condition with the school. If your child requires medicine or special procedures, the school must receive written instructions from your pediatrician.
• Plan ahead. Meet with your child’s teachers regularly to talk about how your child is doing at school. Ask if your child’s health condition is affecting her schoolwork or behavior. If your child is missing a lot of school due to illness, talk with her teacher about ways to help her keep up with her work.

Know the Law

By law, your child is entitled to an education that will help her develop to her full potential. Schools may be required to provide additional services that will assist in both in-school programs and after-school events. Federal laws such as the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) state that every child should be allowed to attend school in the “least restrictive” setting possible.

Feelings of sadness, depression, or being overwhelmed may come and go for both you and your child. This is normal and healthy. As tumultuous as these times can be, most youngsters and their families emerge with few if any long-term behavioral problems or lasting psychological scars. In fact, the majority of children really do manage their situation well, despite riding an emotional roller coaster on occasion. Researchers believe that the likelihood of emo­tional and behavioral problems associated with chronic illness has been de­creasing recently because parents, school staffs, and health-care providers are learning more effective ways to help children and their parents meet their psy­chological needs.

Nevertheless, children who have a chronic illness or condition often feel “different,” socially isolated, and restricted in their activities. They may have school problems and feel overprotected. They may experience recurrent fear and pain. When these emotional difficulties are not dealt with, they can lead to anxiety, sadness, withdrawal, rebelliousness, or a decreased interest in school.

School-age children rarely state that they are sad or depressed. Instead, they may withdraw from friends and family or exhibit rebellious or angry be­havior. They may do poorly in school. They may interfere with their medical treatments, perhaps by refusing to take medication as scheduled. They might experiment with alcohol, drugs, or early sexual activity. Or they may run away from home or contemplate suicide.

Make an ongoing effort to discuss with your child what he is experiencing. Do you think he is displaying signs of despair and hopelessness related to his illness and future? Encourage him to talk about these feelings with you or with another trusted adult. Because your child may not even be aware of his feel­ings, try beginning these conversations with statements like “If I were you, I think I would be feeling…” or “I have read that many kids with this condition feel lonely and sad. How do you feel?”

Some parents are hesitant to discuss feelings about the disease with their child, in an effort to protect the youngster from emotional hurt. Most experts, however, disagree with that point of view. Children can usually adjust much better to an unpleasant truth than to the perception that their parents are up­set and hiding something from them. If parents and children do not talk openly, the opportunities for misinterpretation are high. A youngster’s imagi­nation can run wild, and fears may emerge or be exaggerated.

Thus, it is best to make a commitment to be as communicative as possible. Remind your child that he is not going through this alone and that you will re­main a constant source of love and support. Many studies show that the key to a child’s resilience is a relationship with a caring, loving, accessible adult—someone the child can count on and trust.

If you are concerned about your child’s coping with these stresses, talk to your physician. If your youngster is exhibiting destructive or unusual behav­ior, if he refuses to take his medication, if he is severely withdrawn or if his schoolwork has deteriorated, your doctor might recommend some counseling for the child or the entire family.

Low or high blood sugar in a child with diabetes can cause loss of responsiveness. All of the cells in our body depend upon sugar in our blood as the main source of energy. This sugar comes from the foods that we eat. Certain organs in our body also make and store sugar.

When the body is working properly, it automatically regulates the amount of sugar in the blood. When there is too much sugar in the blood, the body makes insulin, which lowers blood sugar. When blood sugar levels are too low, the body cuts back on the amount of insulin that it is making and lets the blood sugar levels rise.

When blood sugar levels in the body are lower than normal, a child has hypoglycemia. Signs of hypoglycemia in a healthy child are usually mild, such as irritability. In a child with diabetes, hypoglycemia can lead to loss of responsiveness if not treated quickly. A diabetic child can get hypoglycemia if he doesn’t eat enough or doesn’t eat at the right time. He can get hypoglycemia if he takes too much insulin. Blood sugar levels may drop because of exercise, being overheated, or illness.

A diabetic child may have too much sugar in the body. This is called hyperglycemia. It is the opposite of hypoglycemia. This condition may be caused by too little insulin, illness, or stress. It may be caused by overeating, inactivity, or a combination of all of these factors.

If you are not sure if the child has hypoglycemia or hyperglycemia, give sugar. See if the symptoms improve. Always call EMS if symptoms are severe or if the child becomes unresponsive.

Signs of Hypoglycemia and Hyperglycemia

Signs of Hypoglycemia​	​Signs of Hyperglycemia
​Irritability Paleness Drowsiness Confusion Trembling Excessive Sweating Poor coordination Slurred speech Staggering Eventual loss of responsiveness	​Extreme Thirst Very frequent urination Drowsiness Fruit smell on child’s breath Fast breathing Warm, dry skin Vomiting Eventual loss of responsiveness

Anemia is a condition in which the amount of red blood cells in the body is decreased below normal for your child’s age. It can make your child appear pale in color and feel cranky, tired, or weak. Though these symptoms may worry you, the most common causes of anemia―such as iron deficiency―are generally easy to treat, especially when it is detected early. In addition, parents need to be aware of the steps to take to prevent this condition.

Because rapid growth is a potential cause of the condition, the first year of life and adolescence are two age groups where infants and children are especially prone to anemia.

What is anemia?

Anemia means there are not enough red blood cells in the body. Red blood cells are filled with hemoglobin, a special pigmented protein that makes it possible to carry and deliver oxygen to other cells in the body. The cells in your child’s muscles and organs need oxygen to survive, and decreased numbers of red blood cells can place stress on the body.

Your child may become anemic if his or her body:

• Does not produce enough red blood cells. This can happen if she does not have enough iron or other nutrients in her diet (e.g. iron-deficiency anemia).
• Destroys too many red blood cells. This type of anemia usually happens when a child has an underlying illness or has inherited a red blood cell disorder (e.g. sickle-cell anemia).
• Loses red blood cells through bleeding. This can either be obvious blood loss, such as heavy menstrual bleeding, or long-term low-grade blood loss, perhaps in the stool.

What are the common signs and symptoms of anemia?

• Pale or sallow (yellow) skin
• Pale cheeks and lips
• Lining of the eyelids and the nail beds may look less pink than normal
• Irritability
• Mild weakness
• Tiring easily, napping more frequently
• Children experiencing red blood cell destruction may become jaundiced (yellowing of the skin or eyes) and have dark tea or cola-colored urine

Children with severe anemia may have additional signs and symptoms:

• Shortness of breath
• Rapid heart rate
• Swollen hands and feet
• Headaches
• Dizziness and fainting
• Restless leg syndrome

When kids eat non-foods: 

​Children with anemia caused by very low levels of iron in their blood may also eat strange non-food things such as ice, dirt, clay, paper, cardboard, and cornstarch. This behavior is called “pica” (pronounced pie-kuh). Pica often occurs in children who are low in iron and can cause constipation. In these children, the pica usually stops after the anemia is treated with iron supplements. 

If your child shows any of these signs or symptoms, please see your pediatrician.

Even a low level of anemia can affect your child’s energy, focus, and ability to learn. Chronic iron deficiency anemia can result in long term, permanent impairment of development. In most cases, a simple blood count can diagnose anemia.

How can I prevent my child from becoming anemic?

Iron-deficiency anemia and other nutritional anemias can be prevented by ensuring that your child eats a well-balanced diet. Talk with your doctor about any specific dietary restrictions in your household as your child may require a nutritional supplementation to prevent anemia. 

​Here are ways to prevent nutritional anemias: Do not give your baby cow’s milk until he or she is over 12 months old. Giving cow’s milk before your child is ready may cause blood loss in his or her stool and can also decrease the amount of iron absorbed in the gut.If you are breastfeeding: Your baby will have an adequate supply of iron until at least 4 months of age. At 4 months of age breastfed infants should be supplemented with iron until they are eating enough complementary foods that contain are rich in iron (e.g. red meat or iron-fortified cereals). Talk with your pediatrician about foods best suited for this purpose, and how much additional iron supplementation is needed. If you formula-feed your baby: Give your baby formula with added iron. Low-iron formula can result in iron-deficiency anemia and should not be used. See Choosing a Formula.  After 12 months of age, avoid giving your child more than 2 cups a day of whole cow’s milk. Milk is low in iron and can make children feel full, which can decrease the amount of other iron-rich foods they eat.Feed older children a well-balanced diet with foods that contain iron. Many grains and cereals have added iron (check labels to be sure). Other good sources of iron include red meat, egg yolks, potatoes, tomatoes, beans, molasses, and raisins. See Pump Up the Diet with Iron.Encourage the whole family to eat citrus fruits or eat other foods high in Vitamin C to increase the body’s absorption of iron. Although green vegetables contain lots of iron, the iron from many vegetables comes in a form that is difficult for your body to absorb, but Vitamin C can help!

How can I manage anemia if my child has an inherited red blood cell disorder?

Your pediatrician will likely refer you to a pediatric hematologist to provide you with supportive care and education on your child’s specific condition.

Remember:

If your child starts to show any signs or symptoms of anemia, be sure to tell your pediatrician. Also, find out if anyone in your family has a history of anemia or problems with easy bleeding. With proper treatment, your child’s anemia should improve quickly.