May 2022

CRMO Webinar Time Stamps

By |May 17th, 2022||

0:00 - Introduction by Dr. Lori Tucker 3:00 - Dr. Lori Tucker introduces Sheila Grant (Parent Speaker) and Dr. Polly Ferguson 5:55 - CRMO Presentation by Dr. Polly Ferguson: What we know about the cause of CRMO 7:00 - Basics of Immunology 8:00 - Immune Activation and Inflammation 9:50 - Immune System Cells 10:30 [...]

How can we be part of a registry? Are there any studies we can be a part of or ways to help the knowledge around CRMO grow?

By |May 2nd, 2022|, |

There are increasing efforts to collect information about children with CRMO into long-term research registries, to help learn more about this disease, treatments and outcomes.  Some pediatric rheumatology centers have their own research registries, and some centers are collaborating together to collect this information.   Canadian pediatric rheumatologists have formed a CRMO research group [...]

In your opinion how often would an MRI be required for a child with Pelvis and lower spine lesions? Would you wait for new pain or request a yearly MRI?

By |May 2nd, 2022|, |

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 [...]

What are the treatment options for patients where Naproxen did not work? Can you suggest alternative medication/treatment that may work?

By |May 2nd, 2022|, |

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 [...]

If a patient remains on an NSAID throughout childhood and keeps their pain at bay, but the lesions remain, is there concern for permanent bone damage? It seems that there is a philosophical difference of opinion between Rheumatologists here. Some go off pain level and some go off lesions (as far as treatments go).

By |May 2nd, 2022|, |

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 [...]

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