# When should I worry that my 2-year-old might have Rett Syndrome?

Canonical: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-2-year-old-might-have-rett-syndrome
Publisher: Pinnacle Blooms Network / Bharath Healthcare Laboratories Private Limited

Rett Syndrome (ICD-11 LD90.0) is a rare genetic condition seen mostly in girls. Its hallmark is regression — losing skills already gained, especially purposeful hand use and spoken words, usually between 6 and 18 months — often with repetitive hand movements and slowing head growth. By age two, any clear loss of established skills warrants a prompt paediatric review and genetic testing. Diagnosis is medical and is never made from a checklist.

*If your bright, chatty toddler suddenly seems to be slipping backwards — losing words or hand skills she once had — your worry deserves a calm, clear answer.*

## In short
Rett Syndrome (ICD-11 LD90.0) is a rare genetic condition that affects girls far more often than boys. The single most important sign to act on is **regression** — a child who was developing typically begins to *lose* skills she already had, especially purposeful use of her hands and spoken words, usually between about 6 and 18 months. By age two, the key thing that warrants a prompt check is this loss of previously gained abilities, often alongside repetitive hand movements (wringing, washing or mouthing motions) and slowing head growth. These are reasons to seek assessment, not a diagnosis you can make at home.

## What to watch for at this age
Most developmental conditions involve a child being *slower* to gain skills. Rett Syndrome is different — its hallmark is **losing skills that were already there**. By two years, signs that should prompt a clinical conversation include:

- **Loss of purposeful hand use** — she no longer reaches, grasps or points as she once did
- **Repetitive hand movements** — wringing, clapping, washing-like motions, or hand-to-mouth movements that replace useful hand skills
- **Loss of spoken words or babble** she previously used
- **Slowing head growth** (your paediatrician may note this on the growth chart)
- **Problems with walking or balance**, or a stiff, unsteady gait
- **Withdrawal of social engagement** that had previously been present

A single trait in isolation is rarely cause for alarm — many toddlers go through quiet phases or hand habits. It is the **pattern of regression**, the loss of established skills, that makes Rett different and worth checking promptly.

## When to act
Because Rett Syndrome is genetic and confirmed by a specific gene test (most often MECP2), any clear regression — losing words, losing hand skills, or a noticeable slowing of head growth — is a reason to see your paediatrician without delay rather than waiting. Early identification opens the door to therapy that supports communication, movement and daily living. This is a medical pathway first: your doctor can arrange the right specialist referral and genetic testing.

## The Pinnacle way
A clinical [AbilityScore®](/ask/what-is-the-abilityscore-and-how-is-it-calculated) and any diagnosis are formed only at a Pinnacle Blooms Network centre, under qualified clinician care — never from an online form or a checklist. Once a medical diagnosis is in hand, our therapists build a warm, ability-first plan around your daughter — supporting communication through [speech therapy](https://www.pinnacleblooms.org/top-speech-therapy-center-india-proven-improvement-rate), and hand use, posture and movement through [occupational therapy](https://www.pinnacleblooms.org/best-occupational-therapy-center-india-proven-improvement-rate). You can read more about the condition itself on our [Rett Syndrome](/rett-syndrome) page.

## Trusted sources
WHO ICD-11 (LD90.0, Rett Syndrome); American Academy of Pediatrics developmental-surveillance guidance (healthychildren.org); WHO Nurturing Care Framework for early childhood development.

**Next step —** If your daughter has lost words or hand skills she once had, see your paediatrician promptly, and [book a developmental check](https://www.pinnacleblooms.org/enroll-autism-speech-aba-therapies-india) with a Pinnacle clinician to plan supportive therapy.

## Sources
- WHO ICD-11: Rett Syndrome: https://icd.who.int/
- AAP developmental surveillance (HealthyChildren.org): https://www.healthychildren.org/
- WHO Nurturing Care Framework: https://nurturing-care.org/

## Connected topics and perspectives
- Conditions: https://pinnacleblooms.org/ask/conditions
- Parent: https://pinnacleblooms.org/ask/lens/stakeholder/parent
- Toddler-2y: https://pinnacleblooms.org/ask/lens/age/toddler-2y
- Context: https://pinnacleblooms.org/ask/lens/domain/context
- Concern: https://pinnacleblooms.org/ask/lens/intent/concern
- Screen: https://pinnacleblooms.org/ask/lens/lifecycle/screen
- Special Education: https://pinnacleblooms.org/ask/lens/route/special-education
- Early Clarity: https://pinnacleblooms.org/ask/lens/empowerment/early_clarity

## Related question paths

### Understand the subject
- How Rett Syndrome Affects a Child's Daily Life: https://pinnacleblooms.org/ask/how-does-rett-syndrome-affect-a-child-s-daily-life
- Is Rett Syndrome considered a disability?: https://pinnacleblooms.org/ask/is-rett-syndrome-considered-a-disability
- Is Rett Syndrome Genetic or Hereditary?: https://pinnacleblooms.org/ask/is-rett-syndrome-genetic-or-hereditary
- What are common myths about Rett Syndrome?: https://pinnacleblooms.org/ask/what-are-common-myths-about-rett-syndrome
- Types and Stages of Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-types-or-levels-of-rett-syndrome
- What causes Rett syndrome in children?: https://pinnacleblooms.org/ask/what-causes-rett-syndrome-in-children
- What is Rett Syndrome?: https://pinnacleblooms.org/ask/what-is-rett-syndrome
- What is Rett Syndrome, and what does it look like in early childhood?: https://pinnacleblooms.org/ask/what-is-rett-syndrome-and-what-does-it-look-like-in-early-childhood
- Conditions That Occur Alongside Rett Syndrome: https://pinnacleblooms.org/ask/what-other-conditions-often-occur-alongside-rett-syndrome
- Early Intervention Outcomes in Rett Syndrome (Under 7): https://pinnacleblooms.org/ask/what-does-current-research-show-about-early-intervention-outcomes-for-rett-syndrome-in-children-under-7
- What is Rett Syndrome, and its ICD-11 features in early childhood?: https://pinnacleblooms.org/ask/what-is-rett-syndrome-and-what-are-its-icd-11-features-in-early-childhood
- ICD-11 Classification of Rett Syndrome (LD90.0): https://pinnacleblooms.org/ask/what-is-the-icd-11-classification-for-rett-syndrome

### Recognise signs & concerns
- When to worry about Rett Syndrome at 12–18 months: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-12-to-18-month-old-might-have-rett-syndrome
- Early Signs of Rett Syndrome in a 2-Year-Old: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome-in-a-2-year-old
- Early Signs of Rett Syndrome in a 2-Year-Old Girl: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome-in-a-2-year-old-girl
- When should I worry that my 4-year-old might have Rett Syndrome?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-4-year-old-might-have-rett-syndrome
- When should I worry about Rett Syndrome at 18–24 months?: https://pinnacleblooms.org/ask/when-should-i-worry-that-my-18-to-24-month-old-might-have-rett-syndrome
- Early Signs of Rett Syndrome in a 3-Year-Old: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome-in-a-3-year-old
- Can Rett Syndrome Be Cured?: https://pinnacleblooms.org/ask/can-rett-syndrome-be-cured
- Can Rett Syndrome Be Prevented?: https://pinnacleblooms.org/ask/can-rett-syndrome-be-prevented
- Rett Syndrome in Boys: https://pinnacleblooms.org/ask/do-boys-show-rett-syndrome-differently
- Do girls show Rett Syndrome differently?: https://pinnacleblooms.org/ask/do-girls-show-rett-syndrome-differently
- Should I be worried my child might have Rett Syndrome?: https://pinnacleblooms.org/ask/should-i-be-worried-my-child-might-have-rett-syndrome
- Early Signs of Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-early-signs-of-rett-syndrome

### Explore causes & influences
- Are boys more likely to have Rett Syndrome?: https://pinnacleblooms.org/ask/are-boys-more-likely-to-have-rett-syndrome
- Are girls more likely to have Rett Syndrome?: https://pinnacleblooms.org/ask/are-girls-more-likely-to-have-rett-syndrome
- What Causes Rett Syndrome in Young Children?: https://pinnacleblooms.org/ask/what-causes-rett-syndrome-in-young-children
- Early Intervention for Rett Syndrome, UNCRPD & the SDGs: https://pinnacleblooms.org/ask/how-does-early-intervention-for-rett-syndrome-advance-un-child-rights-uncrpd-and-the-sdgs
- Known contributing factors for Rett Syndrome: https://pinnacleblooms.org/ask/what-are-the-known-contributing-factors-for-rett-syndrome-in-early-childhood
- Cost-effectiveness of early therapy for Rett Syndrome in young children: https://pinnacleblooms.org/ask/what-is-the-cost-effectiveness-of-early-therapy-for-rett-syndrome-in-young-children
- Prevalence and Public-Health Burden of Rett Syndrome in India: https://pinnacleblooms.org/ask/what-is-the-prevalence-and-public-health-burden-of-rett-syndrome-among-young-children-in-india

### Understand assessment
- How AbilityScore Tracks Progress in a Child with Rett Syndrome: https://pinnacleblooms.org/ask/how-does-abilityscore-track-progress-in-a-child-with-rett-syndrome
- How Rett Syndrome Is Assessed in a Young Child: https://pinnacleblooms.org/ask/how-is-rett-syndrome-assessed-in-a-young-child
- How Rett Syndrome Is Assessed in Children Under 7: https://pinnacleblooms.org/ask/how-is-rett-syndrome-assessed-in-children-under-7
- What an AbilityScore® of 0–100 means for a child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-0-100-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 100–200 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-100-200-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 200–300 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-200-300-mean-for-a-child-with-rett-syndrome
- AbilityScore 300–400 in Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-300-400-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 400–500 Means in Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-400-500-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 500–600 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-500-600-mean-for-a-child-with-rett-syndrome
- What does an AbilityScore of 600–700 mean for a child with Rett Syndrome?: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-600-700-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 700–800 Means for a Child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-700-800-mean-for-a-child-with-rett-syndrome
- What an AbilityScore of 800–900 Means for a Child with Rett Syndrome: https://pinnacleblooms.org/ask/what-does-an-abilityscore-of-800-900-mean-for-a-child-with-rett-syndrome

### Explore therapy & support
- Can a Child with Rett Syndrome Attend a Mainstream School?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-attend-a-mainstream-school
- Can a Child with Rett Syndrome Attend a Regular School?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-attend-a-regular-school
- Can a Child with Rett Syndrome Live Independently?: https://pinnacleblooms.org/ask/can-a-child-with-rett-syndrome-grow-up-to-live-independently
- How is Rett Syndrome diagnosed in a child?: https://pinnacleblooms.org/ask/how-is-rett-syndrome-diagnosed-in-a-child
- How is Rett Syndrome supported through therapy?: https://pinnacleblooms.org/ask/how-is-rett-syndrome-supported-through-therapy
- Rett Syndrome AbilityScore®: What to Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-0-100-what-should-we-do-next
- Rett Syndrome with an AbilityScore of 100–200: your next step: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-100-200-what-should-we-do-next
- Rett Syndrome: AbilityScore 200–300 — what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-200-300-what-should-we-do-next
- Rett Syndrome: AbilityScore 300–400 — what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-300-400-what-should-we-do-next
- Rett Syndrome with an AbilityScore of 400–500: what to do next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-400-500-what-should-we-do-next
- Rett Syndrome and an AbilityScore of 500–600: What To Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-500-600-what-should-we-do-next
- Rett Syndrome AbilityScore 600–700: What To Do Next: https://pinnacleblooms.org/ask/my-child-with-rett-syndrome-has-an-abilityscore-of-600-700-what-should-we-do-next

### At home & in everyday life
- How can I support my child with Rett Syndrome at home?: https://pinnacleblooms.org/ask/how-can-i-support-my-child-with-rett-syndrome-at-home