๐ Canadian pediatric autoimmune hepatitis education for children and families
Understanding autoimmune hepatitis, one step at a time.
Autoimmune hepatitis (AIH) happens when the immune system causes inflammation in the liver. Treatment can usually bring that inflammation under control, but medicines and regular follow-up remain important even when a child feels well.
A helpful way to think about AIH: treatment is a partnership โ calm the inflammation, keep it controlled, monitor the liver, and adjust the plan when needed.
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 childโs health-care team.
๐ฎ
AIH: Calm the StormPilot a Liver Rescue Craft through an immune storm while learning how AIH treatment helps calm liver inflammation.
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.
๐งช
1. Understand the tests
Blood tests, antibodies, IgG, imaging and often a liver biopsy help put the diagnosis together.
Medicines reduce immune-driven liver inflammation and protect the liver over time.
โฐ
3. Take medicines regularly
AIH can become active again even when a child feels completely well.
๐
4. Keep follow-up
Blood tests and clinic visits show how the liver is responding and whether treatment needs adjustment.
๐ฏ
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.
๐
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
๐ก๏ธUnderstand AIHWhy the immune system can inflame the liver.
Educational metaphor:The game uses signals and checkpoints to explain ideas about inflammation, treatment and follow-up. They are not medicines, blood-test results or a measure of disease control.
Want the real-world explanation?
Return to the AIH sections for diagnosis, medicines and monitoring, or open Understanding Liver Tests & Procedures when a test comes up.
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.
Want more detail about the tests themselves?
The shared LiverSteps testing module explains blood tests, imaging, liver biopsy and procedures in plain language. You can return to AIH afterwards.
Exclude other causesInfections, medicines, metabolic/genetic causes
๐ฅ๏ธ
ImagingLooks at liver structure and bile ducts when needed
๐ฌ
Liver biopsyShows the pattern of inflammation and scarring
๐ฌ
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.
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 childโs overall disease rather than an antibody โtypeโ 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.
Other liver conditions can sometimes resemble AIH. The exact testing depends on the childโs age, presentation, medicines, family history and laboratory pattern.
๐
Quick word bank
A few terms families may hear in clinic:
ALT / ASTLiver enzymes that can rise when liver cells are inflamed or injured.
IgGAn immune-system protein that is often elevated in AIH.
AutoantibodiesImmune markers such as ANA, SMA or LKM that can help support the diagnosis.
BiopsyA small sample of liver tissue examined under a microscope.
MRCPAn MRI-based test that gives a detailed view of the larger bile ducts.
ASCAutoimmune sclerosing cholangitis โ AIH features together with sclerosing bile-duct disease.
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.
๐
Prednisone / prednisolone
Corticosteroids are commonly used to bring active inflammation under control. The dose is usually reduced gradually as the liver improves.
๐ก๏ธ
Azathioprine
Often used as part of longer-term treatment and to reduce how much steroid is needed. Blood tests monitor treatment and possible side effects.
๐งฉ
Other medicines
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.
๐ฏ
How the team knows treatment is working
Doctors usually look for AST/ALT and IgG to move toward โ and ideally return to โ 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 childโs whole clinical picture matter.
Common steroid effects families may notice
๐ฝ๏ธ Appetite / weightIncreased appetite or weight change can occur.
๐ด Sleep / moodSleep disturbance, irritability or mood changes may occur.
๐งด SkinAcne or skin changes may occur.
๐ฆด Longer-term monitoringGrowth, blood pressure, glucose and bone health may need attention.
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.
โ ๏ธ
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.
Do not stop corticosteroids suddenly unless the liver team tells you to. Steroid doses are usually tapered according to a specific plan.
Can medicines ever be stopped? Sometimes, but only for carefully selected children after a prolonged period of stable remission and specialist review. Many children need treatment for years, and relapse can occur after treatment is reduced or stopped. A repeat liver biopsy may be recommended before a withdrawal trial to look for inflammation that may persist even when blood tests are normal. Learn what a liver biopsy involves โ
Taking medicines regularly
This deserves its own page because it is one of the most important parts of living with AIH โ and one of the hardest parts of any long-term treatment.
๐
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 โ not to judge anyone.
โฐ
Use a reminderPhone alarms or a medication app can help.
๐ชฅ
Link to a routinePair medicine with a regular daily habit.
๐
Pillbox or check-off calendarA weekly organizer or simple dose checklist can make missed doses easier to spot.
๐
Make a school/caregiver planIf medicine is needed during the day, make sure school staff or other caregivers know the agreed plan.
โ๏ธ
Plan for travelCarry enough medicine and know how to handle time-zone changes.
๐งพ
Refill earlyDo not wait until the bottle is almost empty.
๐จโ๐ฉโ๐ง
Share responsibilityParents and teens can gradually build a reliable routine together.
๐ฃ๏ธ
Talk about barriers and worriesTaste, pill size, nausea, mood, steroid effects, or worries about medicines can all make doses harder to take.
๐
Keep a written planA simple medicine list with names, times and common side effects can reduce confusion.
๐
Let children help planAge-appropriate participation can make the routine feel more manageable and shared.
โ
Ask if the plan can be made easierIf timing, formulation or the routine is difficult, ask the liver team or pharmacist whether there is a safe way to simplify it. Do not change doses or timing on your own.
๐งโโ๏ธ
Use the whole care teamDoctors, nurses and pharmacists can help troubleshoot side effects, formulations, schedules and refill problems.
A practical adherence plan works best when it is agreed together. Children and teens can take on age-appropriate responsibility while parents, caregivers and the health-care team keep the routine clear and realistic. Written plans, reminders, check-off tools and school support can all help.
๐ค
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
๐งญ
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.
๐งช
Liver tests & IgGTrack inflammation and response.
๐ฉธ
Safety bloodworkBlood counts and medication monitoring.
๐
Growth & pubertyEspecially important with longer steroid use.
๐ฉบ
Clinic reviewSymptoms, doses, side effects and questions.
๐ฅ๏ธ
Other liver testsImaging or elastography when clinically useful.
Not sure what a blood test, FibroScan or scan means?
Use the shared LiverSteps testing resource for the procedure itself, then come back here for what it means in AIH follow-up.
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. โNaturalโ does not always mean safe for the liver or compatible with immunosuppression.
๐ฆด
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
๐ซSchoolMost children can attend normally. A plan can help during flares, appointments or steroid side effects.
โฝActivityUsual physical activity is generally encouraged unless the liver team gives specific restrictions.
๐FoodNo special โAIH dietโ cures the condition. Aim for balanced family eating unless there is a specific nutrition plan.
๐ง Feelings & body imageSteroids and chronic treatment can affect mood or self-image. It is appropriate to ask for support.
โ๏ธTravelCarry enough medicine, keep a medication list and plan refills before leaving.
๐SleepSleep changes can occur, particularly with steroids. Mention persistent problems.
๐งโ๐Teen independenceGradually transfer responsibility while keeping a reliable safety net.
๐คTeamworkFamily, pharmacy, primary care and liver teams can all make the treatment plan easier to follow.
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 โ the bile ducts.
๐ข
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 โAIHโPSC overlap.โ
๐ฌ
Liver biopsy
Biopsy shows the pattern of liver inflammation and can give clues of bile-duct injury, especially when smaller ducts are involved.
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.
๐งป
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 โ often with a stool calprotectin test first. Colonoscopy may be recommended if screening or the clinical picture suggests intestinal inflammation.
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.
Fill in any fields that are useful, then choose โCreate visit summary.โ
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 childโs liver team may give more specific instructions. Use their plan first. Seek emergency care for severe or rapidly worsening symptoms.
๐ต
Confusion or unusual sleepinessNew confusion, difficult arousal or a child who is clearly not acting normally needs urgent assessment.
๐ก
Rapidly worsening jaundice or swellingIncreasing yellow colour, a newly swollen abdomen or leg swelling needs medical review.
Fever while immunosuppressedFollow the teamโs fever plan and seek advice promptly, especially with higher-dose or combination immunosuppression.
๐คฎ
Cannot keep medicines downRepeated vomiting, dehydration or inability to take steroid/immunosuppressive medicines should prompt same-day advice.
โ ๏ธ
Possible serious medication reactionBreathing difficulty, facial swelling, severe rash, severe abdominal pain or rapidly worsening symptoms require urgent assessment.
Do not stop corticosteroids suddenly. If your child is vomiting or cannot take their steroid, contact the clinical team promptly for advice.
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 โweakโ?
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 & About this module
EASL Clinical Practice Guidelines on Autoimmune Hepatitis, 2025
Informed explanations of diagnosis, treatment and long-term monitoring.
ESPGHAN Hepatology Committee position statement, 2018
Informed pediatric AIH and autoimmune sclerosing cholangitis education.
ESPGHAN PSCโIBD position paper, 2024
Informed the explanation of bowel inflammation and bile-duct disease.
Canadian Immunization Guide
Informed vaccination guidance during immunosuppressive treatment.
Kerkar and colleagues โ pediatric AIH study, 2006
Informed the explanation of why taking medicines regularly matters.
Gardiner and Dvorkin โ pediatric adherence review, 2006
Informed practical routines, reminders and family support ideas.
Health Canada mycophenolate safety information
Informed the pregnancy-safety and counselling messages.
Peer-reviewed pediatric AIH literature
Informed explanations of long-term follow-up, relapse and growing independence.
What it is
A plain-language guide to autoimmune hepatitis
Help understanding treatment, medicine routines and follow-up
A way to prepare questions for the liver team
What it is not
Not a diagnostic or prescribing tool
Not an individualized test-interpretation service
Not a replacement for medical care or your childโs care plan