Monday, August 9, 2010

2010 JA Conference Notes - Doctors tips

Allow alone time with your child’s doctors. They may talk about things that they are not comfortable talking about with you, it will make your child feel like they have a part of the decisions being made and will prepare them to do the same as an adult.

Take siblings to the doctor’s appointments whenever possible. This will show them that they are not fun time and will help them to understand the affected child’s disease. When your child meets with the doctor see if she minds if her sibling is present. If your child is okay with the sibling can even help with the injections. (Get the band aid, alcohol pad, or even give it).

Keep a notebook - Track the disease in it. Keep track of medications and anything at all that you notice. Write down questions for your doc in it. We often have a question between appointments and then don’t remember to ask the question, if you write it down you will remember. We also try to keep track of small symptoms (limping one day) so that we can track if they are persistent.

Children should know the names of their medications, what causes them to hurt and what to do about it. Younger children can know the basics and older children more specifics. Teenagers should call the pharmacy for their own refills, older teens should schedule their own appointments.

Knowing when your child is in pain can be a very hard thing to master. They have grown up with pain so it is normal to them and they won’t say that they hurt. EACH CHILD IS DIFFERENT but some children complain of buzzing in their joints, thumping, that it’s hot, etc. Some people say that their child’s mood changes. We ask our child if one knee feels different than the other. Also, children will get smart and realize that if they say they are in pain that equals more drugs so they won’t say they are. In this case ask them how they felt yesterday, they probably feel the same today.

KIDS SHOULD BE KIDS. If your child can’t do something, mention it to your Rheumatologist. The goal should be for your child to have normal activity. To that end know your child, let them do something even if you think it will tire them out. It probably will tire them out but you can’t let JIA run their lives. You always have to be aware of it, but don’t let it limit them if possible. On another note, kids shouldn’t be allowed to use JIA as an excuse. Get them off the couch and have them go play. Moving is the best medicine and it will make them feel better.

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