Q: How often should I take my child to the CRMO specialist?

 

CRMO needs to be monitored on a regular basis. Most patients see their CRMO specialist at least every 6 months or more often, even if they don’t have symptoms.

 

Q: Will my child need to take medication for the rest of his/her life?

 

This answer will depend on your child's individual case. 

 

Q: Will the disease ever go away?

 

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Q:  Will my child be able to play sports?

 

It is important to talk with your child's pediatric rheumatologist about safe activities while the disease is active.

 

Q:  Will my child be able to live a normal life?

 

In most cases, the medications can allow your child to return to normal life.

 

Q: What can I do about my child’s intense bone pain?

 

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Q:  How can we manage pain better?

 

Discuss pain with your child’s CRMO specialist. Write out your plan for pain management below.

 

Q:  Will my other children get this disease/pass down to other family? 

 

Even though genetic factors may play a role in CRMO, CRMO is typically not a hereditary condition. As such, the likelihood of siblings and other family members getting the disease is extremely low.

 

Q:  My child is feeling well. Does he/she need to continue her medications? 

 

Only your pediatric rheumatologist can determine when it is time to discontinue medications.

 

Q:  Can I talk to someone else who had CRMO?

 

The CRMO Facebook support group is a good way to meet other people with CRMO and their family members.

Your physician is always available.

 

Q:  Is there ongoing research about CRMO and how I be more involved?

 

Yes! A group of pediatric rheumatologists from around the world is working tirelessly to come to consensus about a treatment plan for CRMO. Others are looking into biomarkers for CRMO that can show when disease is active. Finally, researchers are looking into the genetic basis for CRMO.

 

Q: My child’s CRMO is in her tibia. Will she need a cast, crutches or a wheelchair?

 

Some children with CRMO use wheelchairs or other devices during the period before treatments begin to help. A cast is not needed unless there is a fracture.

 

Q: My child’s CRMO is in her hip. She can’t walk far. Should we get a handicapped parking permit?

 

When your child has active disease (before the treatment has begun to work), you might discuss this with your pediatric rheumatologist.

 

Q: My child’s CRMO is in her spine. What do I need to know?

 

Children with CRMO in their spine need more aggressive therapy to prevent or limit damage to spine. Treatments usually are given by intravenous infusions (such as bisphosphonates). Your doctor will help decide the best therapy for your child and will explain the risks and benefits as well as side effects.

 

Q: What do I need to know about NSAIDs?

 

Talk with your CRMO specialist about how to take NSAIDs safely. Follow the instructions carefully. Some common side effects include stomachache and headache. Report symptoms to your CRMO specialist. Your medication may be adjusted to address unwanted side effects. Your doctor will check labs periodically.

 

Q: Should I talk to my child’s school about special accommodations (a “504 plan”)?

 

Yes. Even if your child’s pain is currently under control, CRMO can flare at any time.

 

A few common accommodations that you might want to ask for are: extra textbooks for home, an elevator pass, or additional time to move  between classes. Let the school know in advance that your child will miss school for medical appointments.

 

Under the American Disabilities Act, your public school must make appropriate accommodations for your child. This is called a 504 plan. You will need to present a letter from the pediatric rheumatologist to the school.