Castleman disease is rare in the pediatric population. The disease appears to be the same as that found in adult patients, but more research is needed. Please click here for more specific information regarding the disease pathology.

Pediatric patients with unicentric Castleman disease (UCD):

  • UCD is more frequently found in children and adolescents than adults and may affect females slightly more than males.
  • UCD symptoms in children are generally similar to those experienced by adults with UCD.
  • Treatment is also the same for pediatric patients with UCD. In UCD patients, surgical removal of the enlarged lymph node is usually curatiev. If surgery is not possible, this is considered unresectible UCD. These patients may require treatments used for HHV-8-negative MCD (iMCD).
  • Complications of UCD can include paraneoplastic pemphigus or POEMS syndrome and associated malignancies have been reported.

Pediatric patients with idiopathic multicentric Castleman disease (MCD) and HHV-8-associated MCD:

  • iMCD is less common in children, but approximately 20% of published cases affect individuals 18 years of age or younger. If a pediatric patient is diagnosed with iMCD, it is important that they are tested for HHV-8 infection. If they are positive for HHV-8, they have HHV-8-associated MCD. If they are negative for HHV-8 infection, they have HHV-8-negative (idiopathic) MCD (iMCD).
  • Click to read more about symptoms and treatments for iMCD and HHV-8-associated MCD as these are the same for pediatric and adult MCD patients. 

Support for the newly diagnosed pediatric patient and their caregivers:

It is very scary when your child is diagnosed with a rare disease. We recommend connecting with other caregivers of pediatric CD patients. To do so, please contact the Patient/Loved One Ambassador Program by emailing Mileva Repasky (mileva@castlemannetwork.org) and visit our RareConnect page here

The CDCN can also help to connect you with pediatric specialists that are experts in treating Castleman disease to ensure that your child receives the best care possible, click here for physician referral lists or call (610)304-0696 for more information.