Autoimmune Liver Disease Second Opinions
Children who are diagnosed with autoimmune liver disease may have autoimmune hepatitis or primary sclerosing cholangitis. In some cases, children have features of both and may be diagnosed with “overlap” or autoimmune sclerosing cholangitis. Since autoimmune liver diseases are considered rare in children, they can sometimes be difficult to diagnose. Treating them can also be challenging.
Whether your child has just been diagnosed or is having trouble with treatment, our liver experts in the Center for Autoimmune Liver Disease are here to give you the compassionate care and guidance you need going forward. We can help you better understand the diagnosis and explain the leading-edge treatments we offer.
No matter what brings you to Cincinnati Children’s—even if you don’t choose to continue treatment with us—we’re here to help your child live the healthiest life possible.
Discussing a Second Opinion and Treatment Options
To offer a second opinion on autoimmune hepatitis or primary sclerosing cholangitis, our specialists will review your child’s medical history and testing, previous treatments and current condition.
Autoimmune Hepatitis (AIH)
Our knowledgeable team can re-evaluate your child’s diagnosis for this condition if you’re uncertain about it. We have extensive experience with the steroid and non-steroid medications available. Let us help you choose the right one for your child—one that presents the fewest risks, least side effects and most benefits.
For first-round treatments and to control flares, we use these steroids:
- Prednisone – Used to treat liver inflammation – especially at diagnosis and with disease flares. We work with patients and families to balance its benefits with the potential side effects of higher blood pressure and weight gain.
- Budesonide – Can also be used to treat inflammation. It has a targeted effect on the liver and fewer side effects. However, it cannot be used if the liver has significant scarring or fibrosis or in cases of severe liver inflammation.
Our goal is to use other immune-suppressing medications to treat liver inflammation and to reduce steroid-associated side effects. Our team can work with you to determine which medicine is right for you.
- Azathioprine (Imuran) – This medication is an immunomodulator that helps control inflammation.
- Mycophenolate (Cellcept) – This medication is also an immunomodulator that is often used if azathioprine isn’t tolerated or effective.
- Tacrolimus (Prograf, Envarsus) – In some cases, this medication may be used to treat AIH that hasn’t responded well to other therapies.
Our team may consider and discuss other treatment options with you, especially if previous therapy hasn’t been effective.
Primary Sclerosing Cholangitis (PSC)
If your child has been diagnosed with PSC, they’ve likely already been through a lot of tests. PSC doesn’t have a cure yet, and correctly identifying it requires a specialist. So, we’re happy to walk through those test results with you. We can double-check the diagnosis, explain their prognosis (likely outcome), and discuss the long-term management options. We collaborate with radiologists who help review imaging and gastroenterologists with expertise in performing liver-bile duct-related endoscopic procedures.
We know it’s difficult to hear your child’s condition has no cure. That’s why we’ll work closely with you to keep your child’s liver as healthy as possible. Most kids are able to lead healthy, active lives for years after a diagnosis of PSC. In case a liver transplant is needed in the future, or if a liver transplant has already been recommended for your child, we can connect you with a specialist in our Liver Transplant Center for a second opinion.
Inflammatory bowel disease (IBD) is also common with these liver conditions. We know that better control of a patient's IBD means better outcomes for PSC. The IBD and liver physicians work closely to ensure treatments work hand in hand to control both diseases. Treatments include antimicrobials (such as oral vancomycin) and biologics. If your child has IBD, we can also connect you with a provider in the Inflammatory Bowel Disease Center for a second opinion and will work to coordinate the visits with both providers.
Scheduling a Second Opinion
There are four ways to get a second opinion from our office. As a first step, please contact our liver care coordinator at 513-803-1664 or livercenter@cchmc.org. From there, we can schedule one of these second opinion visits:
- Urgent: We can schedule a visit for you to talk with one of our specialists within 48 hours. Please understand we will not have time to completely review your child’s medical records or any images before this appointment.
- Records review: This is a more in-depth visit scheduled within two to three weeks. We will gather your child’s records, imaging studies, labs and biopsy slides, and our specialist will review them before your appointment. You don’t need to bring anything else with you.
- Online: If you have specific questions, you can send in an online request. Our specialist will review your child’s records and will send you detailed written responses. Most insurance plans will not pay for an online review, however, and the out-of-pocket cost is $850.
- Telehealth: We may be able to provide a second opinion through a virtual consultation based on where you live. Please contact our liver coordinator to check if this may be an option for you.
Traveling for a Second Opinion
We know taking time off work and traveling to Cincinnati Children’s can be expensive and stressful—especially if you live a distance away from us. Let our knowledgeable Concierge Services staff help, so you can focus on your child. They can plan your travel details, including booking a hotel at a discounted rate and helping you plan your transportation needs.
Many insurance companies will reimburse families for travel and stay. If this is something you are interested in, let our care coordinator know, and we will connect you with a social worker who can help you navigate this process with your insurance company.
