Talk to your pediatric rheumatology team- often the nurse or OT will have great tips for helping with pain. Talk to your pediatric rheumatology doctor to be sure your child’s treatment is maximized. Using Tylenol or Naproxen can be helpful if your child is not currently taking these; in some cases, a short course [...]
There are no consensus guidelines regarding the benefit of routine follow up MRI testing in CRMO, and there is a lot of discussion among “CRMO” experts about this issue. Many physicians treat based on symptoms and inflammatory signs; other physicians are focused on treating radiograph (x-ray or MRI) lesions. Since many CRMO lesions [...]
As outlined in Dr. Ferguson’s talk, there is no single gene that causes CRMO. Clinically available genetic testing will not help with making a diagnosis, nor will it help in selecting treatment. Treatment for CRMO is based on symptoms, inflammatory markers, and in some circumstances x-ray/MRI findings.
Many pediatric rheumatologists will consider more active treatment in children who have CRMO involving the spine. This may include the options listed above. Whether to treat spine lesions that are not causing symptoms, but identified on MRI, is controversial at the present time.
In Dr. Ferguson’s talk (see the video!), she describes the treatment options often used for children with CRMO. When Naproxen or other non-steroidal anti-inflammatory medications do not work, treatments may include bisphosphonates (bone medication), corticosteroids (to help with short term flares), methotrexate, or biologic medications. Discussing these options with your pediatric rheumatologist will help [...]
For many patients with CRMO, there is long term healing of the CRMO lesions. The bone may be left with an area of what is called ‘sclerosis’, which is like a scar, but this doesn’t mean the bone is weak; it is like healing after a fracture. It is less frequent that CRMO lesions [...]
This is a somewhat controversial topic. Currently, there are no established guidelines for treatment of CRMO in various stages. We do know that many CRMO lesions do progress to a healing phase. Areas that may be more concerning and require consideration of longer treatment would be those affecting the spine, areas that have had [...]
There is not a lot of literature on long-term outcomes of patients with CRMO to provide rates of remission, and persistence of remission after stopping medication. Dr. Ferguson discussed this in her talk- we know how to start medications but we have little evidence base for understanding when to stop. Many children with [...]
A key point to remember with quantity and quality sleep is consistency, so focus on getting into and maintaining a good sleep routine both on weekdays and weekends. And since every child is different, be sure to talk to your pediatric rheumatology team about what could be interfering with your child’s sleep and how [...]
Sleep hygiene is important, but improving your sleep health status has more to do with improved circadian regulation: (1) build your sleep window; and (2) protect your sleep window by managing your light exposure, mealtimes, and physical activity during the day and night.
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