🧠🟡 Autoimmune Hepatitis in Children: A Parent-Friendly Guide

✅ Autoimmune hepatitis (AIH) is a condition where a child’s immune system mistakenly attacks the liver, causing inflammation.
With early diagnosis and proper treatment, most children do very well, and many achieve long-term control.

1) 🧾 Quick “At-a-glance” box (top of page)

✅ Condition name: Autoimmune Hepatitis
Common names: AIH, autoimmune liver disease

Plain-language summary (2–3 lines):
Autoimmune hepatitis happens when the immune system attacks the liver, leading to inflammation and abnormal liver tests. It is not contagious and not caused by anything parents did. Treatment suppresses the immune attack and protects the liver.

Who it affects (typical ages):
Can occur at any age, including infants, school-age children, and teens. More common in girls, but boys can also be affected.

✅ What parents should do today:

• Take abnormal liver tests and symptoms seriously
• Follow medication instructions exactly
• Keep regular blood test and clinic appointments
• Watch for symptoms of flare or medication side effects

⚠️ Red flags that need urgent/ER care:

• Severe sleepiness, confusion, or behavior changes
• Vomiting blood or black stools
• Severe abdominal swelling or pain
• Yellowing of eyes/skin with worsening illness

🟡 When to see the family doctor/clinic:

• Persistent fatigue
• Jaundice (yellow eyes/skin)
• Belly pain or swelling
• Abnormal liver tests found on routine blood work
• Easy bruising or bleeding

2) 🧠 What it is (plain language)

Autoimmune hepatitis is a condition where:

• the immune system mistakenly targets liver cells
• ongoing inflammation damages the liver
• treatment is needed to turn down the immune attack

If untreated, inflammation can lead to scarring (fibrosis or cirrhosis).

What part of the body is involved? (small diagram required)

Common myths vs facts

• Myth: “This is caused by infection or something contagious.”
  Fact: It is autoimmune, not infectious.
• Myth: “My child will need a transplant right away.”
  Fact: Most children respond well to medication.
• Myth: “Treatment is short-term only.”
  Fact: Treatment is usually long-term to prevent relapse.

3) 🧩 Why it happens (causes & triggers)

Cause

• Immune system dysregulation (exact cause unknown)
• Genetic susceptibility plays a role

Triggers (can bring symptoms to attention)

• viral infections
• immune system activation
• sometimes discovered incidentally on blood tests

Risk factors

• family history of autoimmune disease
• other autoimmune conditions (thyroid disease, diabetes, celiac disease)

4) 👀 What parents might notice (symptoms)

Common symptoms

• fatigue
• abdominal discomfort
• jaundice (yellow eyes/skin)
• dark urine
• pale stools
• nausea or poor appetite

In some children

• no symptoms at all (found on routine blood work)

What’s normal vs what’s not

⚠️ Not normal:

• jaundice
• ongoing fatigue
• easy bruising
• belly swelling

Symptom trackers (what to write down)

• energy level
• appetite
• jaundice changes
• abdominal pain
• bruising or bleeding

5) 🏠 Home care and what helps (step-by-step)

✅ Autoimmune hepatitis requires medical treatment. Home care supports healing and medication success.

First 24–48 hours after diagnosis

✅ Do this now:

• Ask your clinician:
  • What type of AIH does my child have?
  • What medications are being started?
  • What blood tests will we monitor?
• Start medications exactly as prescribed
• Arrange lab follow-ups

Supportive care

• balanced nutrition
• adequate sleep
• routine schedules
• emotional reassurance (diagnosis can be stressful)

6) ⛔ What NOT to do (common mistakes)

• Don’t stop medications when labs improve.
• Don’t skip blood tests.
• Don’t start supplements without approval (some affect the liver).
• Don’t assume symptoms will always be obvious during a flare.

7) 🚦 When to worry: triage guidance

🔴 Call 911 / Emergency now

• confusion, extreme sleepiness
• vomiting blood or black stools
• severe abdominal swelling with pain

Example: “My child is very sleepy and not making sense.”

🟠 Same-day urgent visit

• rapidly worsening jaundice
• fever with abdominal pain
• new bleeding or bruising

🟡 Book a routine appointment

• mild fatigue
• medication side effect concerns
• lab abnormalities without symptoms

🟢 Watch at home

• stable child with improving labs and no red flags

8) 🩺 How doctors diagnose it (what to expect)

What the clinician will ask

• symptoms and duration
• family history of autoimmune disease
• medication and supplement history

Physical exam basics

• growth and nutrition
• liver and spleen size
• signs of jaundice or bruising

Possible tests (and why)

• liver blood tests (ALT, AST, bilirubin, INR)
• autoimmune markers (ANA, SMA, LKM)
• immunoglobulin levels (IgG)
• ultrasound
• liver biopsy (often needed to confirm diagnosis and stage disease)

What tests are usually not needed

• repeated biopsies if disease is stable

9) 🧰 Treatment options

✅ Treatment aims to quiet the immune system and protect the liver.

First-line treatment

• corticosteroids (to quickly reduce inflammation)
• immunosuppressive medications for maintenance

If not improving

• adjust medication doses
• add or change immunosuppressive therapy
• reassess adherence and triggers

Severe cases

• hospitalization for acute liver inflammation
• transplant evaluation only if liver failure develops (rare with treatment)

Medication overview (parent-friendly)

• What they do: suppress immune attack on liver
• How given: oral medications
• Common side effects: increased appetite, mood changes, infection risk
• Serious side effects (rare): severe infection, liver failure
• When to seek help: fever, unusual bruising, severe illness

10) ⏳ Expected course & prognosis

• Many children respond quickly to treatment.
• Long-term remission is common with adherence.
• Relapses can occur if medication is stopped too early.

What “getting better” looks like

• improving liver tests
• better energy and appetite
• resolution of jaundice

Return to school/sports

• usually normal once stable
• avoid contact sports if liver or spleen is enlarged

11) ⚠️ Complications (brief but clear)

Common complications

• medication side effects
• relapse if treatment stopped

Rare serious complications

• cirrhosis
• liver failure
• need for transplant

12) 🛡️ Prevention and reducing future flares

• strict medication adherence
• regular blood monitoring
• treat infections early
• avoid alcohol later in adolescence
• avoid unnecessary liver-toxic medications

13) 🌟 Special situations

Infants

May present with jaundice and poor feeding.

Teens

Medication adherence and mental health support are crucial.

Kids with other autoimmune diseases

Care coordination is important.

Neurodevelopmental differences

Use visual schedules and caregiver supervision for medications.

Travel considerations

Carry a medical summary and medication supply.

School/daycare notes

Usually no restrictions; allow flexibility during fatigue or appointments.

14) 📅 Follow-up plan

• regular hepatology follow-up
• scheduled blood tests
• medication adjustment visits
• long-term monitoring even during remission

15) ❓ Parent FAQs

“Is it contagious?”

No.

“Can my child eat ___?”

Usually yes. A balanced diet is encouraged unless otherwise advised.

“Can they bathe/swim/exercise?”

Yes, once stable. Avoid contact sports if liver is enlarged.

“Will they outgrow it?”

It is a chronic condition, but many children live full, healthy lives with treatment.

“When can we stop treatment?”

Only after long-term stability and specialist guidance; stopping too early risks relapse.

16) 🧾 Printable tools (high-value add-ons)

🧾 Printable: Autoimmune Hepatitis Action Plan

Daily:

• Take medications exactly as prescribed
• Watch for fatigue, jaundice, bruising

Call clinic if:

• fever or infection signs
• yellowing increases
• labs worsen

Urgent/ER if:

• confusion
• vomiting blood
• black stools

🧾 Printable: Medication Schedule Box

• Medication: __________ Dose: ______ Time: ______
• Medication: __________ Dose: ______ Time: ______

🧾 Printable: Symptom Diary / Tracker

Date: ______

• Energy: good/ok/poor
• Appetite: good/ok/poor
• Jaundice: none/mild/moderate
• Bruising: yes/no
• Notes: _______________________

🧾 Printable: “Red Flags” Fridge Sheet

⚠️ Urgent: confusion, vomiting blood, black stools, severe belly swelling.

17) 📚 Credible sources + last updated date

Trusted references:

• Pediatric hepatology society resources
• Children’s hospital autoimmune hepatitis pages
• National liver disease foundations

Last reviewed/updated on: 2025-12-30
Local guidance may differ.

🧡 Safety disclaimer

This guide supports—not replaces—medical care. If you are worried about your child, trust your instincts and seek urgent medical assessment.

This guide was fully developed & reviewed by Dr. Mohammad Hussein, MD, FRCPC ROYAL COLLEGE–CERTIFIED PEDIATRICIAN & PEDIATRIC GASTROENTEROLOGIST Board-certified pediatrician and pediatric gastroenterologist (Royal College of Physicians and Surgeons of Canada) with expertise in inflammatory bowel disease, eosinophilic gastrointestinal disorders, motility and functional testing, and complex nutrition across diverse international practice settings.

To book an online assessment Email Dr. Hussein’s Assistant Elizabeth Gray at: Elizabeth.Gray@pedsgimind.ca
In the email subject, please write: New Assessment Appointment with Dr. Hussein

Important: This appointment is completely online as Dr. Hussein is currently working overseas. This service is not covered by OHIP