A Guide to
Managing Your Child’s Scleroderma
 by
Thomas J. A. Lehman, M.D. (originally published in "Scleroderma
VOICE," March 2007)
Although localized and systemic sclerodermas are very
different diseases, living with a child who has either
disease represents a special set of problems. Indeed
the issues faced by the parents of children with most
chronic diseases are the same. Every parent wants to
know the following:
- How do I get the best care for my child?
- How do I answer when they ask me why they have the
disease?
- How do I deal with the fact that my child looks
differently?
- How do I help my child deal with looking differently?
- Should I let them go to the park, the mall, the
show with friends?
- What do I tell my other children?
Gather information
Often the long list of challenges seems overwhelming
and parents wonder how they can cope. It isn’t
easy. However, there are steps that every parent can
follow to make life easier for themselves, their other
children, their spouse, and of course for the child
with scleroderma.
All parents ask the above questions. How do I get
the best care for my child is magnified 100 fold when
your child has scleroderma, but it’s a question
we all ask when our children are sick. If your child
has scleroderma it might even be a little easier because
you can ask your local chapter of the Scleroderma Foundation
for a list of recommended physicians in your area.
After you get your physician recommendation, it’s
important to remember you can control how much care
your child will receive. You have to decide how far
you can travel, how much money you can spend, how often
you can take off work to go to doctors’ appointments,
etc. Seeing an experienced physician, following through
with requested tests and appoint-ments, making sure
children take medicine—these are all things that
take time, effort and money, but they make a big difference.
Sooner or later everyone with a “problem”
thinks to themselves, “Why did this happen to
me?” Children expect their parents to have all
the answers, even teenagers who think their parents
“don’t know anything.” There is no
real answer to “why,” but there is much
to consider before you answer this question. The most
important is to realize that you have probably wondered
why too. If your child is old enough, you may want to
tell them that. Whatever age the child, you need to
make sure they understand that their condition is not
a punishment for something they did.
What to say
Once you and your child are clear that scleroderma
is something that “just happens” and isn’t
anyone’s fault you can move on. The best answer
is often, “I don’t know why this happened
Johnny/Susie. No one can answer that question, but all
of us can work together to help make it better.”
The same answer should apply when other family members
ask why this happened to their sibling and their family.
Talking to people who are not family members is different.
These people need to be separated into those you see
on a routine basis (teachers, neighbors, baby sitters,
other children’s parents, etc.) and complete strangers.
Inevitably you will run into the well-meaning curious
stranger who wants to know why your child looks different.
They don’t have any right to a long answer nor
do you have to tell them your child’s medical
condition. “I don’t know, we’re on
the way to the doctor now,” is often sufficient
to end the conversation politely (you don’t really
have to be headed to the doctor).
It’s harder for children to deal with this.
Small children will only face it alone at school. If
they are with you, you can answer for them. If they
are at school or somewhere else on their own they need
to be prepared. I tell all of my patients who have a
striking appearance to have a practiced answer ready.
It really doesn’t matter what the answer is as
long as it’s practiced and the child is comfortable
with it. It can be the truth, or it can be, “because
of martian contamina-tion that got in my crib when I
was a baby.”
However, teachers, baby sitters, and school nurses
need to know the diagnosis and have guidelines about
what to do in an emergency. You should make sure they
all know how to reach you or your child’s doctor
and have a clear sense of what to do. The same is true
if your young child is staying at a friend’s house.
Their parents should be instructed what to do in case
of an emergency.
Be prepared
As parents all of us worry when our children are not
with us. When children are small we are very careful
where we let them go and who they go with, but as they
get older they become more independent. If your child
has mild localized disease you may not even need to
be reading this, but if your child has a more severe
form of the disease, you need to be prepared. Sudden
unexpected events can happen to anyone, but we all worry
more about children with scleroderma or other diseases.
The best solution is a “medic alert” style
bracelet with emergency contact information, the diagnosis
and any important medications printed on it. Children
sometimes resent these, but they do save lives. If you
have an older child who refuses to wear the bracelet,
make sure they have a business card from the doctor
in their wallet or purse. It should be with their identification
where someone will find it if they’ve been taken
to an emergency facility. I’ve gotten phone calls
from emergency personnel who found my card in the wallet
of children who weren’t able to talk because of
accidents or medical problems. I can then immediately
tell them what I know about the child and start them
moving in the right direction.
Family disease
Coping with an ill child is not just a problem for
mom and dad. It turns out to be a problem for the whole
family. It’s important not to forget this. All
of the children in the family are affected by the illness
even though only one child is “sick.” It’s
important for families to acknowledge this and work
together. This can include special activities for the
child with scleroderma, but should also include special
activities for the other children. Sometimes the child
with scleroderma can come along, but sometimes not.
If necessary, parents should divide up so the other
children don’t feel they are being deprived of
activities.
Making time for everyone is a rule that is important
for all family members. It is important to make special
time for each of the children, but it’s also important
that there be special time for mom and for dad. Each
parent is going to feel the stress of the child’s
illness and each is going to need special time for themselves.
If anyone feels that a chronically ill child isn’t
a major stress on the whole family they are wrong. The
disasters that can result from ignoring this can only
be avoided by open communication.
Know how to deal with your child, their friends, your
family, and your surroundings. If you stop and think
about these problems and deal with them openly, you’ll
have the best chance to do well.
Thomas J. A. Lehman, M.D., is chief of the Division
of Pediatric Rheumatology Hospital for Special Surgery,
and Professor of Clinical Pediatrics Weill Medical Center
of Cornell University. |
