For Children and Teens With PCD
Having pediatric Crohn's disease (PCD) doesn't mean you have to miss out on all the fun of being a kid. You don't have to worry about feeling sick all the time. The important thing is to be open and honest, and to discuss how you're feeling with your parents and your doctor. They want to know how your symptoms are affecting you so they can help find the best care and treatment for you.
It can also be helpful to let other adults like your teachers and the school nurse know you have PCD. That way, they'll be prepared to support you when you're not feeling well.
Remember, you can take charge of your disease. Start by learning everything you can about PCD. You'll find valuable information at www.LivingWithCrohnsDisease.com . This Web site has a whole section on PCD, where you can find information on important topics like:
- How PCD may affect your body, mood, family and friends, and schoolwork
- How to talk about PCD with the people around you—friends, family members, classmates, and teachers
- How to eat in a healthy way
- Places to turn for further resources and support
So what is REMICADE®?
REMICADE® is a type of medicine that works by blocking a protein in your body that causes inflammation in your intestines. This inflammation causes diarrhea, stomach pain, and fever, and also makes you feel tired. Because REMICADE® helps reduce inflammation, and improves the symptoms of PCD.
How do I take REMICADE®?
Only a doctor or nurse can give you REMICADE®. That means you have to go to your doctor's office or a place called an infusion center to get it. They'll hook up an IV infusion to your arm or hand let the medicine drip in, kind of like you've seen on TV.
We know it's kind of unusual to get medicine through an IV. When medicine is infused, it goes straight into your bloodstream and gets to work. Getting an infusion may seem weird at first, but you'll have someone nearby to make sure that everything goes well.
Please read the Medication Guide  for REMICADE® and talk to your parents and your doctor about it.
Infusion fashion: What should I wear?
You'll have at least 2 hours to kick back, relax, listen to the latest tunes, or even do a little schoolwork while you receive your infusion of REMICADE®. So be sure to wear comfortable clothes.
How often do I have to go for infusions?
After the 3 starter doses, you will only have to receive REMICADE® once every 8 weeks. That's about every 2 months, or as few as 6 times a year.
How long will I feel better?
Approximately 88% of children (nearly 9 out of 10) experienced symptom improvement as soon as 10 weeks after starting treatment with REMICADE®. And for most of those children, symptom relief lasted for the duration of the study—through 1 year. Talk to your parents and your doctor to see if REMICADE® is right for you.
How should I talk to my friends about PCD?
Having PCD is pretty personal, and although it's not your fault, you probably feel self-conscious about it. Discussing it can be uncomfortable, so you may have trouble talking about it even with your family and closest friends. Or maybe you want to tell everybody so you don't have to worry about keeping it a secret. Whatever decision you make should be the one that you feel most comfortable with.
Here are a few ideas that can help make it easier to tell your friends about PCD:
- Speak from your heart: If you're nervous about talking about PCD, say so. Real friends will appreciate your honesty
- Think about what you want to say: Maybe you want to say that PCD is a serious condition that causes you to have stomach pain and makes you really tired. Maybe not. But figuring it out ahead of time will make it easier to talk about
- Explain the symptoms: Everyone can relate to stomach pain, fevers, and fatigue. As quiet as they may keep it, most of your friends can relate to having diarrhea too, but how much you share is totally up to you
- Answer questions: It'll stop your friends' imaginations from running wild, and let you know if they understand what you've been saying. The main thing they'll probably want to know is that PCD is not contagious—they can't catch it from you
- Try to have a sense of humor: If you can make a joke or laugh, chances are you can make your friends feel more at ease too
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