CHILDREN
AND LUPUS

 

  • Being 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 professionals,
    can make a significant difference in their quality of life.
  • Easily 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.
  • Recent advances have lead to earlier diagnosis,
    better diagnostic tools and more effective treatments which
    have significantly improved the quality of life,
    long-term prognosis and the life expectancy of children who live with lupus.
  • The 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.
  • In 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 Lupus,
    'Click Here.'
  • The immune system fights through and inflammatory process.
  • With internal inflammation, there may be no visible signs.
  • 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 infections.

  • 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 rare disorder.
  • Girls have lupus about three to seven times more often than boys. (*after age 12)
  • The prognosis in children is no different from that in adults.
  • Obviously, because children are different from adults in the ways
    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 boys.

  • 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.
  • Children do not generally, have a better or worse prognosis,
    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 rash)
    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.
  • Several studies have shown that there is a tendency for lupus to run in families.
  • However, Lupus is not a strongly inherited disease and there is no reason why children of lupus patients should be tested.
  • Unless there are symptoms, testing before the early teens is not fruitful and the results are invariably negative.
  • 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 treatment plan.
  • 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.
  • Children whose joints hurt often take acetaminophen, ibuprofen or aspirin to help with the pain;
    these medications are categorized as NSAIDs.
    (Non-Steroidal Anti-Inflammatory Drugs)
  • Other children take antimalarial drugs to help treat both skin rashes and joint pain very successfully.
  • Antimalarial drugs are usually for treatment of the disease malaria, but some, like plaquenil and chloroquin, have also been found to work against lupus inflammation.
  • Some 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 causing pain.
  • 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 immune system.
  • 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.

  • Besides medicines, a big part of treating lupus may involve changes in a child's lifestyle.
  • Children with lupus must learn to manage the disease so that it interferes with their lives as little as possible.
  • Some 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.
  • Because 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 a flare.
  • 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.
  • Rheumatologists 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).
  • Smoking, 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 with lupus.
  • It's important for kids with lupus to know that
    there is someone they can talk to about how they feel.
  • Also 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.


LUPUS IS NOT CONTAGIOUS
however
LUPUS can be TRIGGERED

  • at Puberty
  • through Sunlight Sensitivity
  • after Viral infections
  • as a result of Trauma
  • during major Hormonal fluctuations
  • after a prolonged course of Medication
    ie: antibiotics

Here's What Some Kids Believe About Getting Sick
When they get sick they think that

IT IS BECAUSE THEY:

  • didn't listen to their mothers or fathers
  • had bad thoughts
  • were mad at their sisters or their brothers
  • told a lie
  • took things that didn't belong to them
  • caught some germs from kids who were sick

IT IS IMPORTANT TO REASSURE THE CHILDREN
AND TO EDUCATE THEM ABOUT THEIR CHRONIC ILLNESS

WITH ALL OF THE MULTI-FACETED SYMPTOMS INVOLVED,
IN WAYS THAT THEY CAN COMPREHEND,
WITH THE HELP OF THEIR MEDICAL PROFESSIONAL TEAM OF DOCTORS.


THE 5 SOURCES OF INSECURITY
TO THE YOUNG AND CHRONICALLY ILL LUPUS PATIENTS
ARE AS FOLLOWS:

  1. THE FRIGHTENING LOSS OF GOOD HEALTH.
  2. A POOR UNDERSTANDING OF THE DISEASE PROCESS.
  3. HAVING A NEED FOR A NEW DEPENDENCY ON OTHERS.
  4. STRONG FEELINGS OF GUILT ABOUT BEING ILL AND BEING A NUISANCE OR FEELING USELESS, BECAUSE OF IT.
  5. A FEELING OF ISOLATION USUALLY SELF-IMPOSED BECAUSE THEY FEEL DIFFERENT.


THE 5 WAYS TO HELP ENSURE
A CHILD's SUCCESSFULL ADAPTATION
TO THE ABOVE FIVE SOURCES
OF INSECURITY
ARE AS FOLLOWS:

  1. DON'T LET THEM TRY TO PLACE BLAME
    FOR THEIR ILLNESS.
  2. ENCOURAGE THEM TO GRASP AT REASONABLE
    HOPES, LIKE SMALL IMPROVEMENTS.
  3. HELP THEM TO SEEK GOOD ADVICE AND THEN TO FOLLOW IT.
  4. ADVISE THEM TO DO WHAT THEY CAN DO FOR THEMSELVES.
  5. SEE THAT THEY DEVELOP SUPPORTIVE FRIENDSHIPS.