Work out a crisis plan with your doctor.

There is something in the universal law of rheumatology that says that flare ups occur late on a Friday or on the week-end.

You have a child climbing up the walls, your whole household is on edge and Monday seems too far away.

The official advice is “if you are worried – go to emergency”.

You know emergency means having to wait for hours depending on how busy the department is. It also means exposing your otherwise well child to other children with a cold, virus or flu.

If the staff do admit your child, and a bed is found, you may have another long wait until your child can go to the ward. Once on the ward not a lot can really happen until your child sees their specialist.

Even so, there are times when we have chosen to do it anyway. There are times when the pressure of managing gets too much. What you do need to remember is that going to emergency may not make things better and in some cases you might actually come away exhausted and feeling pretty horrible.

An emergency department is a place to deal with medical emergencies. If you are caring for a child with chronic issues you should try to avoid going there unless a doctor or liaison nurse tells you to go. These people are highly trained specialists in dealing with a medical emergency. They are not resourced to deal appropriately with a management crisis which is more the domain of the rheumatology team.

It is a good idea to discuss a crisis plan with your doctor. For example, if it is appropriate, they may give you a medication chart for normal days, one for worse days and one for a really bad/new flare up on the week-end type situations.

Have your Crisis Plan in writing somewhere you can find it. Have a medication cupboard stocked with what you will need. This will probably give you confidence to cope with a week-end flare up until you can consult with the rheumatology liaison nurse on Monday morning.

I sometimes worry that I could miss something else going wrong and not respond appropriately. In the past I have also used these strategies;

• I take my daughters temperature as a reality check.
• I have also called a 24 hour health advice line Health Direct at 1800 022 222 to go over my plan.

Having said all that, parental instinct is still the best guide – as the experts say “if you are worried – go to emergency”.  This applies when your kids are young.

No teenager, with experience of the routine, would choose to go to hospital on the week-end unless it is really necessary. These days we let our daughter make the call. If she needs to go to emergency she says so and we go.

We will probably just get sent home after a few hours – but that is not the point. It is a reality check for her and sometimes it is still necessary.

What do you do in these situations?

Crisis photo courtesy of Celine Nadeau at Flickr Creative Commons.