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A Child with a Chronic Illness

Caring for a sick child? Dr. Laurie explains how to navigate the complicated terrain.

The video on STILL'S Disease featured on the site this week raises a host of difficult questions and concerns.

This column is addressed to parents who are navigating the complicated terrain of caring for a sick child, although those of you who are caretakers may also find something that speaks to you.

Before Diagnosis

Persistence matters.  Follow up on tests, uncertainties and symptoms.  You are the best judge of what your child needs – seek advice and don't be afraid to keep asking questions.

Persistence matters.  Follow up on tests, uncertainties and symptoms. You are the best judge of what your child needs – seek advice and don't be afraid to keep asking questions.

Listen to your gut.  I have seen medical people (with all the best intentions) try to calm someone down, and miss what matters.  If you are concerned or worried, find someone who will listen.

Be informed – study, join discussion groups, read, read, read, and search for similar symptoms and situations.

Build Your Team

You are in charge.  I say this to adult patients, and it is just as true when you are advocating for your child.  You have to take responsibility for managing the medical care.

Keep track of records.  Don't expect the medical establishment to take care of this.  Keep copies of X-rays, test results, prescriptions for yourself.  Start a journal and take good dated notes.  Keep track of symptoms, and side effects.  Your record is part of the team.

Talk to your doctor.  If s/he isn't responsive to you, move on.  You need a doc who is part of the team and who listens and works well with your family.  I know:  It's an overwhelming and scary time, which is why you need the doctor -- and the doctor's staff -- to be with you, NOT resisting you.

Nurses matter.  Your pharmacist is part of your team.  Your religious leader, and any other grownups who can help you sort through options, and make serious choices are part of your new tribe.

Keep track of records.  Don't expect the medical establishment to take care of this.  Keep copies of X-rays, test results, prescriptions for yourself.  Start a journal and take good dated notes.  Keep track of symptoms, and side effects.  Your record is part of the team.

This is a time to call in your markers.  Even if you're not a person who depends on others, get over it.  You need them.  You need friends who bring over meals, who run errands, do research, and who listen.  Your neighbors, your family, your dog.  They are all part of the great embracing team of support.  But you need to invite and allow them in.  Don't be a martyr.  There isn't time.

Communication

This can be hard, but your child needs the truth.  Not knowing is scarier than being trusted with the real story.  But you don't have to tell them everything.  Start small.  Let them know you are there for them.  Tell your child that lots of people are on their side and figuring out how to make them better.

I know a child who was so frightened by the grim faces, and the sound of her mother crying at night that she was sure she was dying.  It was a relief to be told that she had a disease, and that it could be treated.

Allow feelings.  Yours and theirs.  This may take practice.  Sometimes when someone we love is sick, it seems overwhelming to admit to fear, or sadness, or being so vulnerable.  But if we practice saying things out loud, that takes away some of the power.

I know a child who was so frightened by the grim faces, and the sound of her mother crying at night that she was sure she was dying.  It was a relief to be told that she had a disease, and that it could be treated and that her mother was sad because her daughter had to suffer.  The little girl could deal with that, and was able to say how she felt.  In the cleared air, there was a brightened mood.

You are the model.  If you shut down, no one will feel safe to express anger or worry or even joy.  If you have trouble doing this, find someone to talk to about it -- a therapist, a priest or rabbi, a wise friend.  Your habits and moods set the tone for the family.  Practice good ones.

Don't assume how everyone else is.  Ask.  Listen.  Receive.

Time Out

This is one of my constant themes:  When you are doing the hard work of caring for someone you love, you need a break.  You must take a break.

This is one of my constant themes:  When you are doing the hard work of caring for someone you love, you need a break.  You must take a break.

The airlines have it right when they tell us, "in the case of oxygen failure, when the little masks drop, put your own mask on before you try to help anyone else!"  You can't be on this mission unless you are taking care of your own physical, emotional and mental health.

Talk to your friends, read a novel, get a massage, take a walk, go out to eat with your partner ... You know what stokes you -- what music, beauty, food, dance, or play helps you remember to breathe.

Stay close to your spiritual center -- mediate, pray.  Avoid people who can't help themselves and bring up scenarios that worry you or make you feel like you're not doing enough.  You are.  You are enough.   You are doing enough.

Trust that your child is getting through this, with all your help and energy and love.

Breathe.

Now you have rekindled the stamina and the heart to do what you need to do.

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