Children's Hyperinsulinism Charity

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Developmental & Neurological Support

Development:  Hypoglycaemia can have a damaging effect on brain growth and development, which is why some CHI children will present with learning difficulties and developmental concerns. A history of severe and/or prolonged hypoglycaemia can cause brain damage visible on a scan. In some children it is thought to be the underlying genetic cause of CHI that is directly affecting their learning and development

Children with persistent congenital hyperinsulinism showed deficits in

  • Attention
  • Memory
  • visual
  • Sensorimotor

Scandinavian Study 2018

  • Delayed development
  • Speech delay
  • Behavioural problems
  • Learning disability
CHI Developmental Timeline
CHI Development Timeline (click to view)

Gross motor development Refers to control of the large muscles of the legs, arms, back and shoulders e.g. walking, running climbing etc.

Fine motor (Adaptive Skills) & Vision co-ordination of small muscle movement-usually involving hand -eye coordination in doing tasks including ADL.

Hearing, Speech, and language Expressive and receptive language skills – understanding and communicating with others.

Personal & Social  regulate their emotions, behaviour, and to form positive relationships with adults and peers.

Cognitive Development – children learn to play, think, explore, learn, remember, and solve problems.

Early Signs of Developmental Concerns:

Please remember to also check for hearing and/or vision problems.

Gross Motor

  • At 4 months- child who lacks head control
  • At 6 months – persistence of primitive reflexes
  • At 10 months – not sitting without support
  • By 12 months – not pulling to a stand by 12 months
  • Floppy or stiff compared to other children of same age.
  • By 18 months – not walking.
  • Clumsy or uncoordinated gait
  • Difficulties in balancing, walking, frequent falling
Early development for Children with CHI

Fine Motor

  • Rubs eyes frequently.
  • Holding head in unusual position to look at an object.
  • Eyes appear to be crossed in or out.
  • Brings objects close for inspection.
  • Difficulty in reaching for objects, picking up objects, lacking pincer grasp.
  • Early appearance of hand preference before 1 year of age
  • Struggling with self-help tasks/ADL
  • Immature handwriting
  • Clumsiness/frequent falls

Hearing, Speech and Language

  • Not startling with loud sounds or respond to name or instructions.
  • Ears appear deformed or small.
  • Not babbling or vocalising
  • No consistent words by 18 months ( SLT team suggests-wait till 2 years)
  • No word combinations by 24 months.
  • Not speaking well by age 3
  • Talks in a loud or soft voice.
  • Not interested in communicating
  • Strangers having problems understanding child’s speech by 3 years of age.
  • Slowed or stagnant speech development.
  • Regression or loss of speech and language skills.
  • Stuttering/stammering in speech

Personal and Social Development

  • Failure to make appropriate eye contact.
  • Lack of social smile
  • Dislikes kisses, cuddles, hugs & close physical contact
  • Not taking part in social games e.g. ‘peek a boo’.
  • Often withdraws in to own world.
  • Lack of non-verbal gestures like finger pointing, eye pointing, waving goodbye etc
  • Poor attention or impulsivity
  • Lack of shared enjoyment with parents/caregivers
  • Peer relationship difficulties

For more detailed information, this downloadable pdf provides detailed guidance guidance to your child’s learning and development in the early years foundation stage

The Children’s Hyperinsulinism Charity

We are in the process of producing some resources and networking with Charities and organisation that can offer support, tips, and advice we recommend the following:

Speech and Language

Speech and Language UK also known as ICan

Progress Checker

Our progress checker is based on what we know about how babies and children develop skills. Choose the age of the child and then answer the questions. At the end, we will direct you to some helpful advice and resources.

This downloadable pdf provides the ages and stages of children’s communication development from birth to 5 years.

Ages and Stages

Our guide to the typical stages of speech and language development in babies, children and young people.

BBC Tiny Minds

A collection of tips and advice to help with children’s speech and language skills.

Developmental Milestones

Who can help with Developmental Concerns?

Community Paediatrician

  • Most community paediatric services will accept children with 2 or more areas of

developmental delay or identified conditions, with an impact on neurodevelopment.

E.g. Downs Syndrome, Cerebral Palsy, Autism

  • ADHD assessment may be offered by CAMHS team or Paediatrician –depending on the
  • services commissioned in that area

Who can refer?

  • GP, Health Care Professionals,
  • SENCO may refer children to community paediatric services by completing their respective referral form or SPA (single point of access form)
  • Parents may be able to refer to individual services such as Speech and Language therapy/occupational therapy or physiotherapy in some areas.

Health Visitor

  • Health visitors are registered nurses/midwives who have additional training in community public health nursing.
  • They provide information and advice to parents on a range of topics, including nutrition, child development, and mental health.
  • Health visitors carry out assessments of children’s development and offer guidance on how to support their growth and development.
  • They work with families to identify any issues that may be affecting their health and wellbeing and provide support and referrals to appropriate services.
  • Health visitors can provide emotional support to parents who may be experiencing stress, anxiety or other difficulties related to parenting.
  • They can also offer practical support such as breastfeeding advice, help with weaning, and advice on managing minor illnesses.
  • Health visitors work closely with other healthcare professionals and agencies to ensure that families receive the right support at the right time.
  • Overall, health visitors play an essential role in supporting parents and promoting the health and wellbeing of children and families.

Health Visiting across UK

Across the four nations of the UK, there are differences between the health visiting services offered in each nation.

England: Healthy Child Programme (HCP)

  • 5 mandated contacts antenatal health promoting review, reviews at: 10-14 days, 6 to 8 weeks, 1-years, 2 to 2 and a half years.
  • Recently revised and added 3- and 6-months reviews.
  • Universal, Targeted, Specialist support

Scotland: Universal Health Visiting Pathway

  • 11 home visits – 8 within the first year of life and 3 Child Health Reviews between 13 months and 4-5 years.

Wales: The Healthy Child Wales Programme

  • Health Visitor Antenatal Review, Family Health Reviews: One to Six Weeks, 8-16 weeks, 6 months,15 months, 27 months, 3 1⁄2 Years Old.

Northern Ireland: Department of Health (DoH) Child Health Promotion Programme

  • The Northern Ireland health visiting workforce currently does not have the capacity to deliver the full universal CHPP to all pre-school children and priority is therefore given to contacts in the first year of life and responding to complex child and family health needs.

Early Intervention & the Multi-Disciplinary Team (MDT)

  • Health Visitors provide early interventions, can signpost to support or refer to other services if they identify developmental concerns.
  • All professionals involved in your child’s care are referred to as the Multi-Disciplinary Team (MDT)
  • If your child needs support from several different agencies, you may be invited to meetings called TAC/F (Team around the child/family) or Early Help.
  • These meetings help all the different services and professionals who are supporting you and your family work better together, by planning with you about how everyone can best support you.
Cognitive development in CHI

Neurodevelopmental Conditions

Hypoglycaemia can have a damaging effect on brain growth and development, which is why some CHI children will present with learning difficulties and developmental concerns. A history of severe and/or prolonged hypoglycaemia can cause brain damage visible on a scan. In some children it is thought to be the underlying genetic cause of CHI that is directly affecting their learning and development


Epilepsy means the child has a tendency to have unprovoked seizures.

Seizures can present in a variety of ways.

  • may be obvious and dramatic such as violent shaking and loss of consciousness.
  • can also be very subtle such as vacant stares or pauses in the middle of activities, unusual changes in vision or behaviour.

It is thus easy to mistake other events or behaviours for these types of subtle seizures, such as attention problems which are also common in children with CHI.

Keeping a diary of such events, along with taking a blood glucose level when a child with CHI has a seizure, is a good idea for when you need to seek advice with concerns.

Where a child has been medically diagnosed with epilepsy, they will have individual advice and plans on what to do in the event of a seizure, usually from the child’s paediatrician or epilepsy nurse specialist.

For more advice on epilepsy, please visit:

Cerebral Palsy (CP)

Cerebral Palsy is an umbrella term to describe abnormal muscle tone, posture and movements in young children with brain injury.

Hypoglycaemia is one cause of CP, although most children with CP have other causes.

A child with CP may have physical problems with mobility, using their hands, speech and swallowing. How severely a child is affected by these issues varies enormously and so it is always good advice to look at the individual child and what support they will require to meet their particular needs. In addition, they may receive advice and input from a physiotherapist, occupational therapist and speech and language therapist who can provide more advice for the teacher.

For a more detailed explanation of Cerebral Palsy, please visit the following websites:

Visual Impairment

Visual impairment is a specific difficulty seen in children with CHI particularly those with severe new-born hypoglycaemia. This is because hypoglycaemia particularly injures the parts of the brain that are responsible for vision. This is often called “cerebral visual impairment” or “cortical visual impairment” (CVI) because the visual impairment is due to problems in the brain and not the eyes.

CVI can be severe, at the level of blindness, whereas other children have subtle CVI, which may be identified for the first time only at school because they have difficulty with reading, seeing the whiteboard or apparent clumsiness. It is therefore good advice for the teacher to seek advice if they notice the child having difficulties with vision.
Additional advice is also available from the specialist teacher for visual impairment.

For more information on CVI, please visit:

The Children’s Hyperinsulinism Charity

The above impairments (CP, epilepsy, learning disability and visual impairment) are the most well-recognised and evident neurological effects of CHI and hypoglycaemia.

However, it is clear from long-term studies of children with CHI that there is an increased rate of other difficulties that impact on learning and development and benefit from additional support in the school.

 It is therefore wise to be mindful of the following as reasons for a child’s difficulties.

Fine motor skills development with CHI


Dyspraxia (also known as developmental coordination disorder – DCD) is a surprisingly common condition affecting movement and coordination in children and adults.

Specific learning difficulties (dyslexia, dyscalculia, dysgraphia)

Dyslexia – Dyslexia is a specific learning difficulty which primarily affects reading and writing skills. However, it does not only affect these skills. Dyslexia is actually about information processing. Dyslexic people may have difficulty processing and remembering information they see and hear, which can affect learning and the acquisition of literacy skills.

Dyslexia can also impact on other areas such as organisational skills.

Dyscalculia – Dyscalculia is a specific and persistent difficulty in understanding numbers which can lead to a diverse range of difficulties with mathematics.

Dysgraphia – Dysgraphia can manifest as problems with fine motor skills, spatial perception, and/or language processing.

Attention difficulties including Attention-Deficit/Hyperactivity Disorder (ADD or ADHD)

Attention deficit hyperactivity disorder (ADHD) is a condition that affects people’s behaviour. People with ADHD can seem restless, may have trouble concentrating and may act on impulse.

Specific language impairment

Specific language impairment (SLI) refers to difficulties that are particular to language only. Difficulties can occur with either comprehension or verbal expression or both.

Specific cognitive and sensory problems (e.g. planning, working memory)

Hearing impairment

Hearing impairment is usually caused by a problem either with how sound travels through the ear to the auditory nerve (hearing loss or deafness) or how sound is interpreted by the brain (auditory processing).

Social communication or social skill difficulties

Autism: Autism Spectrum Disorder, or autism, is a set of lifelong developmental differences. Developmental differences affect how someone perceives and processes information and responds and learns as they grow up. Autism can affect how a person experiences and copes with the world around them.

Some of these may not become apparent until a child reaches secondary school age when the cognitive demands of learning increase. It is good advice to seek specialist advice (developmental or community paediatrician) from the relevant medical professionals if there are any concerns.

Thanks to

  • Kat Sturgeon, Paediatric Nurse, Health Visitor, Head of 0-19 Service Tower Hamlets
  • Dr Giri Santhanam, Consultant Community Paediatrician, Barts Health NHS Trust London
  • Dr Ram Kumar Consultant Paediatric Neurologist, Alder Hey Children’s Hospital

Further advice and support is available in the following Cerebra guides and NHS Greater Glasgow and Clyde Resources:

Sensory Processing

Sensory processing refers to how people experience, interpret and use their senses to guide their day-to-day behaviour. This guide will outline the most common sensory processing difficulties people can experience, as well as providing an overview of sensory assessments and interventions and strategies for sensory processing difficulties.

Downloadable PDF documents on sensory processing thanks to Falkirk Council

Physiotherapy and Occupational Therapy

Developing fine motor skills – please note that this downloadable activity guide may not be suitable for all children and care should be taken with small pieces/marbles. Thanks to NHS Glasgow and Clyde KIDS

Insert Fine Motor Skills Activity Pack

Helping Children and Teens to Develop life skills, these are useful guides to supporting your child with independence but please be aware they may not be suitable for all children:

Thank you to Falkirk Council


This guide describes common signs of anxiety and informs you on how to spots signs of anxiety in children with intellectual disability. It also details specific anxiety disorders.

Challenging Behaviour

The Be-Well Checklist can help parents, carers and professionals to reduce challenging behaviour and improve the wellbeing of people with severe learning disability and complex needs.

Sleep Guide

We know that if one child doesn’t sleep, the whole family suffers. Our three-part guide helps you understand the issues around sleep that might be causing disturbed sleep in your family. Firstly it looks at common sleep problems in children with complex needs and how these are assessed. It also describes sleep problems in specific genetic syndromes. Finally it outlines strategies that can be used to improve sleep problems in all children.