Start with the big picture
A new AIH diagnosis can bring a lot of unfamiliar words. Families do not need to learn everything at once. These four steps cover the main journey.
1. Understand the tests
Blood tests, antibodies, IgG, imaging and often a liver biopsy help put the diagnosis together.
Open Understanding Liver Tests & Procedures →2. Calm inflammation
Medicines reduce immune-driven liver inflammation and protect the liver over time.
3. Take medicines regularly
AIH can become active again even when a child feels completely well.
4. Keep follow-up
Blood tests and clinic visits show how the liver is responding and whether treatment needs adjustment.
The treatment goal
Treatment aims to bring liver inflammation under control and keep it controlled. Doctors usually aim for AST/ALT and IgG to return to the normal range. Some children respond quickly; others take longer or need treatment adjustments.
Blood tests help the liver team see how well treatment is working and decide what to do next.
A reassuring starting point
AIH can usually be controlled with treatment. Many children continue school, sports and everyday activities while their liver team follows them closely.
What this module can help with
What is autoimmune hepatitis?
AIH is an immune-mediated liver disease. “Autoimmune” means the immune system mistakenly targets part of the body — in this case, the liver.
Possible symptoms
Tiredness, nausea, abdominal discomfort, reduced appetite or joint aches can occur.
Sometimes jaundice
Some children present with yellow eyes/skin, dark urine or a more sudden hepatitis-like illness.
Sometimes no symptoms
AIH may be found because liver blood tests were abnormal for another reason.
🎮 AIH: Calm the Storm
Play the approved LiverSteps Kids AIH game right here. You stay inside the AIH module — there is no separate website or new browser tab.
Return to the AIH sections for diagnosis, medicines and monitoring, or open Understanding Liver Tests & Procedures when a test comes up.
How doctors diagnose AIH
There is no single blood test that proves AIH. Doctors combine the history, laboratory pattern, immune markers, exclusion of other causes and liver tissue findings.
The shared LiverSteps testing module explains blood tests, imaging, liver biopsy and procedures in plain language. You can return to AIH afterwards.
Why a liver biopsy matters
A small sample of liver tissue can help confirm that the pattern fits AIH, show how active the inflammation is, and assess fibrosis (scarring). It can also give clues that bile ducts are involved, which may change what further testing is needed.
What happens during a liver biopsy? →Antibodies are clues — not the whole diagnosis
Families may hear names such as ANA, SMA, LKM, LC1 or SLA. They help the liver team put the pattern together, but treatment is based on the child’s overall disease rather than an antibody “type” alone.
What imaging is for
Ultrasound can look at liver structure, spleen size and blood flow. If the team is concerned about bile-duct disease, MRCP can provide a detailed look at the larger bile ducts.
Understand ultrasound, MRI and MRCP →Why other causes are checked
Other liver conditions can sometimes resemble AIH. The exact testing depends on the child’s age, presentation, medicines, family history and laboratory pattern.
Quick word bank
A few terms families may hear in clinic:
Treatment: calm the inflammation and keep it controlled
The exact regimen is individualized. The liver team balances disease control, side effects, age, severity and how the child responds.
Corticosteroids are commonly used to bring active inflammation under control. The dose is usually reduced gradually as the liver improves.
Often used as part of longer-term treatment and to reduce how much steroid is needed. Blood tests monitor treatment and possible side effects.
For example, mycophenolate mofetil (MMF), tacrolimus or cyclosporine may sometimes be used when standard treatment is not tolerated or is not working well enough. The choice depends on the individual child.
How the team knows treatment is working
Doctors usually look for AST/ALT and IgG to move toward — and ideally return to — the normal range. Some children get there quickly; others take longer or need changes in therapy.
A slower response does not automatically mean treatment has failed. The trend over time and the child’s whole clinical picture matter.
Common steroid effects families may notice
Azathioprine monitoring
Blood counts and liver tests are checked because azathioprine can rarely cause problems such as low blood counts, pancreatitis or liver-test changes. Tell the team about new severe abdominal pain, persistent vomiting, unusual infections or other concerning symptoms.
Important for adolescents taking MMF
Mycophenolate mofetil (MMF) can seriously harm a developing pregnancy. If an adolescent could become pregnant, the liver team should discuss pregnancy prevention and reproductive-health planning before and during MMF treatment. Do not stop MMF on your own; contact the clinical team promptly if pregnancy is possible or planned.
Learn what a liver biopsy involves →
Taking medicines regularly
This deserves its own page because it is one of the most important parts of living with AIH — and one of the hardest parts of any long-term treatment.
Why regular doses matter
A child can feel completely well while liver inflammation is becoming active again. Missing medicines repeatedly can make it harder to keep AIH controlled and may lead to abnormal liver tests or a flare.
If doses are being missed, tell the liver team. The goal is to solve the problem together — not to judge anyone.
Common reasons doses get missed
- Busy mornings or changing schedules
- School, sports, sleepovers or travel
- Unpleasant taste, pill size or nausea
- Steroid side effects or frustration with treatment
- Teenagers taking on more independence
- Feeling well and wondering whether medicine is still necessary
If a dose is missed
Follow the instructions from your liver team or pharmacist. If you are unsure whether to take, skip or adjust a dose, ask rather than guessing. Do not double or change doses unless you have been told to do so.
Monitoring and everyday life
Follow-up is not only about symptoms. Blood tests can show changes before a child feels different, and monitoring also helps the team watch for medicine effects.
Use the shared LiverSteps testing resource for the procedure itself, then come back here for what it means in AIH follow-up.
Vaccines and infections
- Review vaccines early: ideally before significant immunosuppression starts.
- Non-live vaccines can generally be given when indicated, although the immune response may sometimes be reduced.
- Live vaccines should not be given during significant immunosuppression unless the liver/immunization team has specifically confirmed that the vaccine is safe. Selected live vaccines may occasionally be considered with mild immunosuppression under specialist guidance.
- Ask what to do after important exposures such as chickenpox or measles.
New medicines or supplements?
Tell the liver team or pharmacist about prescription medicines, over-the-counter products, vitamins, herbal products and supplements. “Natural” does not always mean safe for the liver or compatible with immunosuppression.
Bone health during longer steroid treatment
Growth and bone health deserve attention when steroids are used for longer periods. The team may review calcium and vitamin D intake, check vitamin D when appropriate, and consider a bone-density scan (DEXA) if steroid exposure is prolonged or there are other risk factors.
Everyday life
When AIH and bile-duct disease overlap
AIH mainly causes inflammation in the liver tissue. In some children, inflammation or scarring also affects the tubes that carry bile through and out of the liver — the bile ducts.
Autoimmune sclerosing cholangitis (ASC)
When autoimmune hepatitis features and sclerosing bile-duct disease occur together in a child, clinicians often use the term autoimmune sclerosing cholangitis. Families may also hear “AIH–PSC overlap.”
Liver biopsy
Biopsy shows the pattern of liver inflammation and can give clues of bile-duct injury, especially when smaller ducts are involved.
How a liver biopsy is done →MRCP
MRCP gives a non-invasive view of the larger bile ducts and can help identify narrowing or irregularity.
Understand MRI / MRCP →Does overlap change treatment?
The autoimmune hepatitis component is treated with immunosuppression. If bile-duct disease is also present, the monitoring and treatment plan may be different. Some children may also receive ursodeoxycholic acid (UDCA) for the bile-duct component, depending on their individual findings and specialist plan.
Why the bowel may also come up
Inflammatory bowel disease (IBD) is more common in children with sclerosing cholangitis/ASC, and bowel inflammation can sometimes be quiet. The team may ask about bowel symptoms and screen even when a child feels well — often with a stool calprotectin test first. Colonoscopy may be recommended if screening or the clinical picture suggests intestinal inflammation.
What happens during endoscopy / colonoscopy? →The Cholestasis module explains bile ducts and bile-flow problems in more detail.
Prepare for the next AIH visit
Use this tool to organize what changed since the last appointment. Information entered here stays in this browser page and is not sent or stored by LiverSteps.
Useful questions
- Are AST, ALT and IgG moving in the right direction?
- Is the medicine plan changing?
- Are safety blood tests up to date?
- Any concerns about side effects or growth?
- Is there any reason to look at the bile ducts?
Bring the practical details too
- Updated medicine list
- Pharmacy/refill problems
- Missed-dose patterns
- School/travel plans
- Vaccines or infection exposures
When to call the team or seek urgent care
Your child’s liver team may give more specific instructions. Use their plan first. Seek emergency care for severe or rapidly worsening symptoms.
Common family questions
Will my child need medicines forever?
Many children need long-term treatment. A carefully supervised withdrawal trial may be possible for selected children after a long period of stable remission. In children, the liver team may recommend a repeat biopsy before stopping treatment to check that liver inflammation has truly settled. Continued follow-up is important because relapse can still occur.
Can AIH come back after blood tests are normal?
Yes. Normal blood tests mean the disease is well controlled at that time; they do not always mean it has permanently gone away.
Does AIH mean the immune system is “weak”?
No. AIH is caused by misdirected immune activity. The medicines used to control AIH can reduce some immune responses, which is why infection and vaccine planning matter.
Will my child need a liver transplant?
Most treated children do not. Transplant becomes relevant in uncommon situations such as severe liver failure or disease that cannot be controlled despite specialist therapy.
Evidence and about this module
The main page is written for families. This section lists the key guidance used to support the clinical framing without turning the module into a literature-review page.
What this module is
- A plain-language pediatric AIH education tool
- A diagnosis and treatment explainer
- A dedicated medication-adherence resource
- A bridge to Cholestasis when bile ducts are involved
- A clinic visit-preparation and safety tool
What it is not
- Not a diagnostic calculator
- Not a medication dosing guide
- Not a replacement for biopsy or imaging interpretation
- Not a reason to start, stop or taper immunosuppression without specialist advice
- Not a replacement for emergency or specialist care
Educational only
This site does not diagnose AIH, decide treatment, or replace medical care. It is meant to help families understand AIH and prepare for better conversations with their child’s health-care team.
Privacy
Information entered into the visit-preparation fields is processed only in this browser page. This page does not transmit or store those entries.