Most children with HHT have normal, healthy childhoods, with or without nosebleeds. Pulmonary AVMs may develop before puberty, but complications in asymptomatic children are extremely rare. However, cerebral AVMs, which are generally present at birth, can bleed in childhood. Brain MRI (to screen for cerebral AVMs) and pulse oximetry (to screen for large, potentially symptomatic pulmonary AVMs) are usually the only screening tests performed in pre-pubertal children.
Once you place a call to the HHT Center, your call will be returned for an intake history, by either the nurse coordinator or one of the physician co-directors. Over the phone, we will try to determine how we can best help in your HHT care. If you are coming from out of town, we will do our best to set up the necessary tests in advance. We will then arrange a visit to our HHT clinic. You will be seen by one of our co-directors, Dr. Justin McWilliams or Dr. Gary Duckwiler, who will function as your primary HHT doctor at UCLA. A history and exam will be performed. The necessary tests, procedures, and/or referrals will then be arranged, as well as follow-up in the HHT clinic. The staff of the HHT clinic will help coordinate your HHT care and ensure that you receive the best care possible.
Start with a phone call to the HHT center. If there is a chance you might have HHT, a clinic visit can be arranged. One of our HHT specialists can perform a full history and exam, discuss the diagnosis, and recommend any necessary tests.
The more information the HHT physicians have, the better care they can provide for you. If you have been seen for HHT-related problems in the past, any medical records you can obtain, including lab tests, clinic visits, and procedure notes, are very helpful. If you have had any screening examinations (such as a chest CT, bubble study, or brain MRI), then a CD containing the images from these tests should be obtained and brought with you to your clinic visit. Family members are also very welcome at your clinic visit, as the disorder often affects several members of a single family.