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About
Primary Immune Deficiency
IDF PATIENT/FAMILY HANDBOOK | CHAPTER XVIV
Infants and Children with Primary Immunodeficiency Diseases
Most children and teenagers with primary immune deficiency
diseases continue to play, go to school and socialize normally!
 Introduction
If your child has received the diagnosis of a
primary immunodeficiency disorder, it is important
to understand the role you will play in the child's
future. It would be nice to think you could adjust
to this new role slowly, however, unless there is a
family history, you are presented with a number of
new challenges with little preparation. One of your
first challenges is to minimize the impact of chronic
illness upon the child's life without compromising
their care.
Once the diagnosis of a primary immunodeficiency
has been made, children must learn how to live
with this diagnosis on a daily basis. Although having
a primary immunodeficiency disease is a chronic
disorder, the symptoms and their impact on the child
will vary considerably. The diagnosis of a primary
immunodeficiency does not mean that the child
will be sick every day. Most diagnosed children will
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 an infant or child
can be very emotional. Fear of the unknown can
be one of the most prevalent emotions, but can be
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
immunodeficiency 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 essential. 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:
- A brief history leading to the diagnosis that can
be written by the parent or a physician
- Copies of laboratory evaluations confirming
the diagnosis
- A current list of physicians caring for the child
with up-to-date addresses and phone numbers
- A chronology of important events, specifically
noting types of treatment and therapy, changes
in therapy and subsequent responses to
that therapy
- A current up to date list of the child's medications
- Allergies to medications
- An immunization record or lack of immunization
- Current insurance information
- Explanation of benefits records can be kept in
the diary or separately, but should be
periodically reviewed for accuracy
Insurance concerns that arise are more easily
resolved through the use of the diary. The diary may
be especially 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 issue 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.
- Have a list of questions prepared in writing. Doctors cannot spend as much
time as they would like with each patient, so be ready with any questions
that you have.
- Remember to take notes. When possible, take another family member or friend
along on the visit. It is always wise to have more than one person familiar
with the patient's medical routine. This will allow you time to visit with
the doctor individually, if necessary, as well.
- Designate a special tote bag just for these medical visits. The tote should
contain:
- A couple of toys or age-appropriate activities - it may not be wise
to share toys at the doctor's office. You don't want to go home with more
germs.
- Favorite books or a new book can help your child stay occupied and calm
during long waiting periods.
- A notebook for taking notes.
- A contact list with names and phone numbers of family, friends, and
school personnel.
Sometimes you and your child will go for tests
immediately after the visit or the visit could be
extended for other reasons. Be prepared for a
change in plans or long office visits. For instance,
you may 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 involved healthcare providers.
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 Child's Life
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
immunodeficiency faces.
Such challenges may include:
- coping with symptoms that may be
uncomfortable or hinder regular activities
- daily treatments or medicines
- trips to the physician's office
- uncomfortable procedures
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
immunodeficiency receives.
It is helpful to remember that children need limits
and consistent expectations and responses to
their behavior. This provides security to children
by increasing the predictability of their world.
Developing and maintaining expectations, or
"family rules" for all children in the family helpsthem understand their role in the family and what to
expect as well as 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 or she can do to contribute
to the family. If he or she is able but not willing, or
chooses not to follow through on an expectation,
the consequences should be clearly stated,
age-appropriate 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 parents
find, because there are so many trips to the
physician's office, it becomes clear that they
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 difficult 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 much loved activity or a
favorite meal for dinner.
Providing knowledge of your child's condition to
their friends and their friends' parents at an early
age helps to foster acceptance. They will grow up
together knowing the special circumstances that
surround them. Your child will know he or she is
not so different after all.
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 the child and parent are
separated for an extended length of time. Also,
the addition of new care providers can create
anxiety for children and parents alike. Conversely,
this 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 away eases the
transition to school or care outside the home.
Many parents recommend advance preparation
to feel more comfortable with any specific
concerns related to their child's health needs.
Preparation includes a refresher course on your
child's particular primary immunodeficiency and
his or her current therapy. By reviewing your
child's medical diary 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 physician 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 physician about
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 little 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. Due to their keen
awareness of their child's history, these parents
are often in the physician's office before symptoms
are apparent to others. As a parent, you know
your child best of all and will often pick up the
early signs of potential trouble. Another situation
resulting from the misunderstanding of primary
immunodeficiency diseases is the fear that a
child with a primary immunodeficiency disease
will spread illness to others when, in fact, the
opposite is true. Families of a child with primary
immunodeficiency 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, homebound and even dualenrollment
options can be viable alternatives.
Your child's physician 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 the hospital, who
will take care of siblings at home, and 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 their lives will
change). Siblings may also feel jealous or resentful
of the attention that the hospitalized child receives.
Following are some relatively simple strategies
that may help minimize the stressful effect of
hospitalizations on the child and family:
For the hospitalized child, bring favorite items
and activities such as stuffed animals, a
special blanket, books, videos, toys or games
from home. These all help make the hospital
environment 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 like, sound like, look like) and by planning
how to cope or get through it (utilize Child Life
specialists, nurses, and procedure technicians).
Maintain regular limits and routines.
For siblings, maintain routines as much as
possible. Try to keep siblings at home if
possible, rather than sending them to stay
elsewhere; consider bringing alternative
caregivers to stay with them in the home if
necessary. Communicate honestly and openly
about the situation and provide 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, try to eat
nourishing meals and get enough sleep. Be
sure to take short breaks to get outside or at
least out of the hospital room. This may help
you gain energy and perspective at times.
A Child's Understanding of Illness
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.
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
and that the treatments are not punishment–
instead it is 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 was 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 and even science
"experiments" can encourage more advanced
discussion and understanding.
Learning from Your Children
Children are resilient. However, there may be
times when you are not sure how well your child is
coping. You may have noticed some changes in
your child's behavior that occur more commonly
than the occasional tough day that all children have.
- eating or sleep disturbances
- changes in school performance
- an increase or appearance of fears
- changes in social behavior
- regression in developmental milestones
- withdrawing from others
These actions may alert you that your child needs
some extra support. Often, talking and giving your
child the opportunity to share concerns with you
and together planning ways to cope in the future is
all that's needed.
Other times, children and parents may benefit from
additional support from extended family and friends,
and caring adults in the child's school or community
(such as guidance counselors, religious youth group
leaders, and mental health providers).
How to Ask Questions That Get Children Talking
Open-ended Questions
- "What kind of questions do you have?" is very
different than "Do you have any questions?"
- "What do you think will happen?"
- "What do you think is the best (or worst) thing that
could happen?"
- "What are you wondering about?"
When You're Concerned About A Specific Behavior
- "I've noticed that you're not eating much lately,
and that's not like you. I think there's something on
your mind."
- "Lately, you've been getting angry about things
that don't usually bother you. Why do you think
that is?"
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 such
as "What does he say?" or "What is she thinking/
feeling now?" can further extend the play. 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.
Learn from your children by observing their
behaviors and playing and talking with them. These
connections will help you identify and change
potentially problematic stress reactions before they
interfere with your child's normal activities.
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