diagnosed with a chronic medical condition
like lupus, presents many challenges
for both patients and families.
- For parents
and children with special needs,
having access to a variety of resources in the
community as well as through your medical
can make a significant difference in their
quality of life.
accessible literature, information and
some knowledge of the various treatment options
available to them is a good start on the journey
to learning specifically related information to
each individual patient and their problems and
symptoms as lupus
is a significantly individualized disease for
every person, including children.
advances have lead to earlier diagnosis,
better diagnostic tools and more effective
have significantly improved the
quality of life,
long-term prognosis and the life expectancy of
children who live with lupus.
prognosis for children and adolescents with systemic lupus has improved
dramatically over the past twenty years.
With modern therapy, children now do nearly as
well as adults.
- Lupus is a
chronic, autoimmune disease, which means that
the child's immune system has created auto-antibodies
and the immune system has begun to fight against
the child's own body (lupus has no cure)
including their skin, organs, blood,
bones and joints, and connective tissue which
involves the whole of the human body.
children's words, very accurately, their
immune-system is confused,
because it's supposed to protect you and instead
it is attacking you.
- For more info on Children with Discoid
- The immune
system fights through and inflammatory process.
internal inflammation, there may be no visible
- If vital
organs are repeatedly inflamed, irreversible
damage can occur.
When it becomes necessary to
suppress the immune system, with steroids or
other immunosuppressive meds, the child remains
susceptible to secondary conditions that can
seriously complicate the picture, like
- When a child
is diagnosed with lupus, the entire family's
world can turn upside down.
- About 20-25%
of all lupus occurs in children.
- While the
exact number of cases is not known, it is not a
- Girls have lupus about three
to seven times more often than boys.
(*after age 12)
prognosis in children is no different from that
because children are different from adults in the
they show their illness, diagnosis may sometimes
prove a difficult undertaking.
Lupus dx is especially
rare below the age of twelve in both girls and
Lupus is relatively rare before
the *age of 12 in girls
before their menstrual periods begin, due to the
major hormonal changes at the time of their first
menstrual period at approx. this age.
- The earliest
childhood form of lupus is neonatal lupus.
do not generally, have a better or worse
have a greater or less chance of kidney disease,
or have any difference in their immune responses
than do adults.
- It is not unusual to have a
classic butterfly rash (also known as a malar
and with children more commonly are the non-specific signs such as
tiredness, failure to do well at school, aches
and 'growing pains', headaches, recurring swollen
glands with fever and so on.
studies have shown that there is a tendency for
lupus to run in families.
Lupus is not a strongly inherited disease and
there is no reason why children of lupus patients
should be tested.
there are symptoms, testing before the early
teens is not fruitful and the results are
- However, if
the mother considers her child to have features
suggestive of lupus, then she should ask her
doctor to do the necessary testing immediately,
as the earlier the diagnosis the better the
prognosis will be.
- Once a child
has been diagnosed with lupus,
the pediatric rheumatologist will decide on a
- The type of
treatment a child has depends on how severe the
lupus is and what parts of the body are affected,
ranging from the skin to the internal organs.
- There is
usually involvement of a multi-disciplinary
medical team in the care of children with a
chronic illness like Lupus.
- Almost all
kids with SLE take some kind of medicine to
control their lupus.
whose joints hurt often take acetaminophen,
ibuprofen or aspirin to help with the pain;
these medications are categorized as NSAIDs.
children take antimalarial drugs to help treat
both skin rashes and joint pain very
drugs are usually for treatment of the
disease malaria, but some, like plaquenil and
chloroquin, have also been found to work
against lupus inflammation.
patients take steroids, like prednisone,
which are anti-inflammatory medications that help
to fight fatigue and fever and many of the other
symptoms of lupus, especially inflammation
- For others
with more severe lupus that affects
their kidneys or other organs, there are immunosuppressive
drugs, like imuran or cytoxan.
- These drugs
help hold back or suppress the activity of the
They are very strong, though, and
are used only when it's really necessary, as
during any severe flares which are non responsive
to less aggressive treatments and with those
flares with organ involvement.
medicines, a big part of treating lupus may
involve changes in a child's lifestyle.
with lupus must learn to manage the disease so
that it interferes with their lives as little as
patients working with a multi-disciplinary
health care team are able to get help from a
rheumatologist, a nephrologist, a nurse
practitioner, and a social worker.
lupus will always be extremely different from one
person to another, the team will create a special
treatment plan based on individual needs.
- The child,
her mom or dad and the team work together to help
control the symptoms of lupus and prevent flares.
- A 'flare' is a period
of time when the disease gets worse.
- This can
make the patient feel much, more
tired, sick, feverish, and achey than usual, and
it can also do damage internally and unseen.
- At this time
it is very important to have the doctor
monitoring the lab results of the patient for
potential invisible symptoms.
- For a lot of
kids with lupus, paying close attention to what
they do every day can help prevent the triggers
which cause their flares.
- A child with
lupus needs to get enough rest and to avoid
becoming too busy or stressed out because being
tired, run down, or stressed can trigger
- Eating well
and exercising regularly can also help a child
with lupus to avoid a flare.
- When it
comes to staying healthy, sometimes what a person
with lupus doesn't do can be just as important as
what she does do.
recommend that people with lupus
don't spend time in the sun unless
they wear lots of sunscreen and protective
clothing because UV rays may trigger a flare with
rashes, fever and *worse
(*symptoms internally and unseen are also
triggered by the sun rays).
drinking, and drugs are also
especially bad ideas for kids with lupus, as they
are for anyone particularly those with lupus.
- With the right medication and
treatments along with the right attention to
their health habits and compliance with their
parents and doctors, most kids with lupus can go
to school with no problem, as well they can take
part in lots of their activities, play sports and
do all the normal stuff with their friends that
they would do if they didn't have lupus.
- The best
thing is to be a good listener for someone young
important for kids with lupus to know that
there is someone they can talk to about how they
learning about the disease and understanding it
can help the child who is living with lupus.
And of course when the child is
going through a sick time
or what is called a flare-up of the illness,
keeping them up-to-date on what's going on in
school is always a huge help and a must for the
patient, so they can still fit in and feel normal
as much as possible.