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About
Primary Immune Deficiency IDF PATIENT/FAMILY HANDBOOK | CHAPTER XV Children, Teenagers and Primary Immune Deficiency Diseases
Once the diagnosis of a primary immune deficiency has been made, children and teenagers must learn how to live with this diagnosis on a daily basis. Although for many patients having a primary immune deficiency disease is a chronic disorder, the symptoms and their impact on the child or teenager will vary considerably. The diagnosis of a primary immune deficiency disease does not mean that the child will be sick every day. Most children with primary immune deficiency diseases continue to play, go to school and socialize normally. Understanding the diagnosis, using preventive measures, and communicating with medical professionals will help you, your child, and your family live with this chronic health condition. The family as a whole is affected by any chronic illness and should be encouraged to participate in decision-making events that affect the family unit. Family stresses on top of those encountered while managing chronic illnesses can be minimized if recognized early and addressed immediately. Communication with all parties is essential. Dealing with a chronic illness in a child can be very emotional. Fear of the unknown can be one of the most prevalent emotions, easily controlled with education. If you want your child to grow up and be able to handle their own care, lead by example. Don't feel ashamed to seek help from medical professionals or others in your situation, and look for credible information sources. COORDINATING YOUR CHILD'S CARE When your child is diagnosed with a primary immune deficiency disease, you become part of your child's health management team and his or her primary advocate. Your role in monitoring your child's symptoms and responses to treatments and communicating your observations and concerns is vital to the medical team's assessment and treatment of your child. In many cases, more than one physician will be involved in caring for your child; therefore, coordinating communication and keeping comprehensive and accurate records of your child's medical course is very helpful. Many parents suggest that a diary is an invaluable tool to document events affecting your child's medical care. Recommendations for items to be kept in the diary include:
Insurance concerns that arise are more easily resolved through the use of the diary. The diary also will prove useful if the child should need to see a new physician, especially in an emergency. This form of accurate information shortens the lengthy, often repeated history-taking sessions by new physicians, allowing for more time to focus on the immediate problem at hand. It is wise for more than one person in the family to be aware of the child's medical routine. A well-documented diary can be extremely helpful for those times when the child is in the care of caregivers other than parents. In addition to bringing the diary to each medical visit, some other suggestions when visiting a medical professional include:
Sometimes you and your child will go immediately for tests or the visit could be extended for other reasons. Be prepared for a change in plans or long office visits and the need to make other arrangements for your other children. Encourage the medical professional to communicate directly to your child when possible. Although your child may be young, it is always appropriate for him or her to build a relationship with the people involved in his or her health care. Ask for written instructions concerning medicines and treatments. This will help avoid mistakes by all parties, as well as give you written instructions to be placed in your medical diary. NORMALIZING YOUR CHILDREN'S LIVES When a child has a chronic health condition, everyone in the family is affected. Parents may be tempted to be overprotective, which is a very natural response as it reflects the concern of keeping the child as healthy as possible. It is also common for parents to want to compensate for the additional challenges their child with a primary immune deficiency faces. Such challenges may include:
It may be a natural inclination to compensate for challenges by loosening rules and expectations or by providing rewards. However, the loosening of rules, or provision of extra rewards, may result in some undesired consequences. For instance, children may recognize when parents change what is expected of them and worry about why this has changed or what the change means (some children may even wonder if it means their illness is getting worse). Changes in expectations, or expectations that are different from their siblings, may also serve to confirm the child's concerns about being different and he or she may perceive that difference negatively. In addition, children may expect this special treatment to continue even when parents or other caregivers begin to transition to more typical behavioral expectations, creating a potential cause of friction in the family. Finally, brothers and sisters are also likely to sense a difference in behavioral expectations and may become jealous and/or resentful of the attention and rewards the child with primary immune deficiency receives. It is helpful to remember that children need limits; consistent expectations and responses to behavior provide security to children by increasing the predictability of their world. Developing and maintaining expectations, or "family rules”, for all children in the family helps them know about their role in the family and about what to expect and what is expected of them. If your child with Primary Immunodeficiency is unable to do his chores, reevaluate the expectations and find something else that he can do to contribute to the family. If he is able but not willing, or chooses not to follow through on an expectation, the consequences should be clearly stated, ageappropriate and similar to siblings, and carried out. This process of limit-setting and discipline should be the same for all children in the family. Similar to the pitfalls of relaxing family rules and expectations, providing children with rewards requires some careful consideration. As one parent remarked, “Because of the number of trips to the physician's office, it becomes clear that you cannot reward the child with every needle stick or test.” Such procedures or treatments may indeed be challenging for your child. Planning and practicing ways of coping can help you and your child better manage challenging events. For those times when a reward is appropriate, provide your child with a few choices that blend into his or her everyday world. For example, on treatment days, allow your child to select a favorite activity or a favorite meal for dinner. PREPARING FOR SCHOOL OR OTHER CARE OUTSIDE THE HOME In addition to their role with the health care team, parents also act as the link with their child's other caregivers, such as those adults who interact with, and supervise, their children in childcare or school. The transition from infant/toddler to school aged child is particularly challenging. Often this is the first occasion separating the child and caregiver for an extended length of time. Also, the addition of new care providers can create anxiety for patients and parents alike. Conversely, the opportunity to grow intellectually and emotionally should be greeted with enthusiasm as it represents a great milestone in life. Children are very perceptive and will often share their parents' emotions during this change in life. An optimistic outlook beginning weeks, even months, before the first day eases the transition into school or care outside the home. Many parents recommend that a degree of advance preparation is helpful in feeling more comfortable with any specific concerns related to their child's health needs. Preparation includes a refresher course on your child's particular primary immune deficiency and his or her current therapy. By reviewing your child's medical diary briefly with school officials and personnel, you will aid in educating them about your child's condition and potentially facilitate the prediction of illness patterns in this new environment. Timing and early warning signs of illness should be discussed with key personnel (i.e., school nurses, teachers, counselors, and principals). Your child's doctor and other health care providers may also be called upon to answer any specific questions. Other items to consider include transportation on normal and sick days, as well as a phone "call down" list in case of illness. Appropriate letters from the doctor as to physical limitations, if any, medications to be given at school, and immunization recommendations should be obtained in advance to allow resolution of specific concerns prior to the beginning of school. In addition, plan in advance with your child's teachers for specific needs that may impact school routine. Special arrangements may be necessary for children who need frequent meals or restroom privileges due to intestinal malabsorption, hall passes or scheduled nursing visits for medication administration, and/or assignment of classes to minimize the effects of absences due to regularly scheduled treatments or doctor's visits. Yearly review of these items should allow a safe and smooth transition throughout the school experience. Some parents have reported two types of misunderstandings that may arise among other people with less knowledge of Primary Immunodeficiency Diseases. One is the perception that parents of children with Primary Immunodeficiency Diseases are overprotective. Often, a child looks healthy to others, but the child's parents are aware that a simple cold can lead to other complications. Because of their keen awareness of their child's history, many times these parents are in the physician's office before symptoms have time to present themselves. As a parent, you know your child best of all and will often pick up the early signs of potential trouble. Another situation that may be encountered as a result of a misunderstanding of Primary Immunodeficiency Diseases is the fear by others that a child with a Primary Immunodeficiency Disease will spread illness to others when, in fact, the opposite is true. More specifically, families of a child with Primary Immunodeficiency Disease may fear going to public places or having their child attend school due to a perceived risk of illness exposure. It should be emphasized that most children with Primary Immunodeficiency diseases are able to attend school safely. In some very special instances home schooling, home bound and even dual-enrollment options can be viable alternatives. Your child's doctor can help in making this decision, but as a general rule, if your child has no restrictions on being in public spaces (i.e., movies, malls, airplanes), they may safely attend school. It is important to prepare yourself and your child for handling such misunderstandings. Planning what to say in a situation where someone expresses worry that your child will spread illness to others, for instance, can be beneficial and minimize the tension of the situation. HOSPITALIZATIONS Everyone in the family is affected when a child is admitted to the hospital. Parents worry about the well-being of their child in hospital, who will take care of siblings at home, and even worry about missing work. The child in the hospital is likely to experience stress related to procedures, separation from family and friends, and/or disappointment related to missing out on regular activities such as field trips or other school events. Brothers and sisters may worry about the child in the hospital and about how their own lives will be affected (e.g. who will take care of them while their parents are at the hospital, how will their lives change). Siblings may also feel jealous or resentful of the attention that the hospitalized child receives. There are some relatively simple strategies that may help minimize the effect of hospitalizations on the child and their family: For the hospitalized child, bring favorite items and activities; stuffed animals, a special blanket, books, videos, toys or games from home all help the hospital environment be more familiar and comfortable. If the hospitalization will be longer than a few days, ask if pictures and get well cards can be taped to the walls. Become familiar with what procedures will be conducted and when you may accompany your child. When possible, prepare your child for procedures or events by helping him or her know what to expect (different parts of a procedure, what it may feel, sound, look like) and by planning how to cope or get through it (utilize child life specialists, nurses, and other procedure technicians). Maintain regular limits and routines. For siblings, maintain routines as much as possible. Have siblings stay in the home if possible, rather than sending them to stay elsewhere; bring alternative caregivers to stay with them in the home. Communicate honestly and openly about the situation, providing updates as needed. Support the continued connection between children at home and the hospitalized child through phone calls, notes or cards, and visits, if possible (check with your child's nurses about visiting policies). Maintain regular limits. For parents, utilize the support and resources available in your community and at the hospital. Continue to take care of yourself, eating and sleeping, of course, but even taking short breaks to get outside or at least out of the hospital room can help you gain energy and perspective at times. CHILDREN'S UNDERSTANDING OF ILLNESS Even very young children can sound like experts regarding their illness when they repeat the words and explanations they have heard adults use. However, the ability to repeat such statements does not indicate that children truly understand the meaning of the words they have just used. Asking a child, “What does that mean to you?” can help you evaluate his or her individual level of understanding. As children continue to grow and develop, they will need to revisit questions related to their Primary Immunodeficiency Disease (e.g. “what is this illness?,” “how come I have it?,” “how did I get it?,” “what's the medicine for and why do I need it?”). Sometimes changes in your child's behavior can be a clue to initiate these conversations. (Please see following section on Learning From Your Child) PRESCHOOL CHILD The child may perceive treatment, procedures, or hospitalization as punishment because of their immature understanding. What these children need to know is that they did not cause the illness, that the treatments are not punishment - that it's the best way the doctors and nurses know for helping them stay well or get better. If it's a particularly challenging treatment or procedure, it may help to say “We wish there were an easier way, but this is the best way”. SCHOOL-AGE CHILD The child begins to develop an understanding of the interior body and an understanding of illness. This age-group benefits from employing their natural curiosity to facilitate understanding about the body systems and their specific symptoms and treatments. Books and/or videos, such as children's anatomy books, The Magic School Bus: Inside the Human Body, or Pasteur's Fight Against Microbes (resources listed in the Reading List chapter), and even science "experiments" can encourage more advanced discussion and understanding. ADOLESCENT The adolescent develops a more mature understanding of illness. They may also develop an understanding of mind-body connection (i.e., stress may influence symptoms). Teens may benefit from the opportunity to explore or talk about the meaning of having a chronic health condition, how lifestyle choices may influence their health, and how their health may influence their lifestyle. Most importantly this is an age when there is the beginning of transitioning to increased independence and adult care. LEARNING FROM YOUR CHILDREN Children are resilient. However, there may be times when you are not sure how your children are coping or you may have noticed some changes in their behavior that occur more commonly than the occasional tough day that all children have. Continuing patterns of:
Other times, children and parents may benefit from additional support from extended family and friends and/or caring adults in the child's school or community (such as guidance counselors, religious youth group leaders, mental health providers). In her book How to Help Children Through a Parent's Serious Illness, Kathleen McCue provides indispensable advice on supporting children who are dealing with the illness of a parent. Her practical advice is equally valuable when children are coping with their own illness, the illness of a sibling or any close family member. Learning from your children through observing their behaviors and their play and by talking with them will help you identify and change potentially problematic stress reactions before they interfere with your child's normal activities. HOW TO ASK QUESTIONS THAT GET CHILDREN TALKING: Open-ended questions:
When you're concerned about a specific behavior:
Multiple choice: “I've read (or heard) that lots of kids whose brother or sister is in the hospital worry that...” then offer several likely possibilities (such as, it could happen to them, they won't be able to do things their friends are doing like the school trip). Ask “What has this been like for you?” PLAYING AND LEARNING FROM YOUR CHILDREN PRETEND PLAY/DRAMATIC PLAY: By using dolls, animals, action figures, even cars and trucks, children play out their experiences. Adults can learn what is on children's minds by watching and by participating. Play with cars can become play about the mommy car, the daddy car, the baby car, the big brother car. To learn the most from your children, guide the play gently - perhaps setting the characters (“you be the mommy and daddy dolls and I'll be the baby and sister dolls”) and setting the scene (“the mommy and baby dolls are at the hospital; what do you think is happening there?”). Using questions can further extend the play “what does he say?” “what is she thinking/feeling now?”. Usually children take over the play and begin to direct all of the characters. If you sense that your child is reluctant or wants to do different play, give him or her the freedom and control to move on. DRAWING: Children often use drawing and other forms of art for emotional expression. Encouraging children to talk about their drawings or artwork can be eye-opening for adults. Open-ended questions (such as, “What is happening in this picture; what is this person thinking or feeling?” or “Tell me the story of this picture” can help you learn about your child's inner world. |
Most children and teenagers with primary immune deficiency
diseases continue to play, go to school and socialize normally!