This site is intended for parents/carers of children who may display an unusual/atypical motor and/or cognitive development (or the lack of). The intent of this website is not to make a diagnosis but to encourage the parents/carers to promptly seek medical advice and/or referral to a relevant specialist.

What happens next?

Things to note when contacting your healthcare provider

What you will find on this page:
Visiting your healthcare provider
Visiting the paediatrician/specialist
Next steps
Questions to ask your healthcare provider
Development diary

It is important you contact your healthcare provider as soon as you suspect anything unusual

Most observations turn out to be harmless or have a cause other than rare/developmental disorders. Nevertheless, you should take action if you notice any unusual signs in your child’s development, by discussing them with your healthcare provider. Early detection increases the chances for early intervention and outcomes for your child.

Visiting your healthcare provider1

If you suspect any developmental anomalies in your child, book an appointment with your healthcare provider promptly.

During the consultation with your healthcare provider, you should express the aspects of your child’s development you are most concerned about, giving specific
examples of atypical developmental patterns you have observed. For instance, you may explain that your child doesn’t seem able or struggles to perform some tasks
they previously learned or mastered.

Your healthcare provider may perform some tests and examine your child, which may involve trying to mimic the signs you reported. These may include, but are not limited to:

  • A thorough physical exam: checking your child’s height, weight, eyes, heart, hips, and for boys, their testicles.
  • They will ask you questions about their general health, eating habits, learning and behaviour at home and in different environments.
  • They may test their coordination, how they move, and if they react to a stimulus (such as light or sound).
  • They may also take samples of your child’s blood or urine to test.

Your healthcare provider may require for further tests or analyses to be performed to obtain a clearer picture of your child’s health, ruling out some suspected infections or illness.

If your healthcare provider feels your child’s symptoms require additional monitoring or assessment, they may ask for you to return for a follow-up appointment, or refer you to a specialist. If you notice any further changes between appointments, bring these to your healthcare provider’s attention immediately.

Visiting the specialist/paediatrician2,3

If your healthcare provider determines your child requires further assessment, they may refer them to to see a specialist or paediatrician – a doctor who specialises in
looking after children. These specialists have more experience and knowledge specific to some aspects of your child’s development.

The first appointment with the specialist usually lasts up to an hour. Some of the tests conducted by your healthcare provider may be repeated, and they may ask
questions relating to your child’s health, past medical history, your family and their health.

During this or a following appointment, your child’s development may also be assessed further. This may be interactive, with your child tasked to engage with
toys or games. Most are fun, and the doctor might ask for your help in encouraging them, or keeping your child focussed and calm. It is important that you allow the
doctor to assess your child independently, without any involvement from yourself, unless requested, as this could affect the outcome of the assessments.

Please remember: Finding out what could be causing your child’s developmental concerns could take some time. Keep attending appointments and bring any new signs or concerns to the attention of your healthcare professional.

The specialist/paediatrician will discuss with you the concerns you have and provide you with feedback and advice based on their observations. They will agree a plan with you and offer recommendations, where needed. The next steps may include the following:

  • Suggest services that can support you or your child.
  • Refer your child to other specialists for additional professional opinion, if needed.
  • Arrange further medical tests (such as blood tests, scans, or genetic tests), if appropriate.
  • Arrange any follow-up appointments with your healthcare provider.
  • Discuss a therapeutic plan, if applicable.

It is important that you play a proactive role in managing your child’s developmental concerns. Take notes, share your observations, and ask questions.

Here are some questions you may want to ask your healthcare provider to facilitate the conversation:

Here are some questions you may want to ask your healthcare provider to facilitate the conversation:

  • Are the anomalies I have noticed normal for a child of this age? Does my child meet the typical milestones?
  • What can I do about my child not meeting their milestones?
  • Is there anything I should worry about regarding my child’s development?
  • Is there a reason my child can no longer do something they had previously learned/mastered? (give an example)
  • Do you think there is an underlying cause to these symptoms?
  • What are you testing for specifically, and what do you suspect could be of issue?
  • Can I alter my child’s daily pattern to help with their symptoms, or for them to be more comfortable?
  • How are their gross and fine motor skills progressing?
  • If a diagnosis is becoming increasingly difficult to find, would it be worth considering a genetic test?
  • What are the next steps?

Some tips to help you along the way:

You can download some diaries to use as a tool to track your child’s development and capture any unusual signs of potential concern. We recommend that you make notes regularly and share them with your healthcare provider.

  • For children up to 12 months

      • Please enter your postcode to help us support and educate the local healthcare community on the importance of early diagnosis of rare diseases.

    • For children 12 months and above

        • Please enter your postcode to help us support and educate the local healthcare community on the importance of early diagnosis of rare diseases.

      Video record your child’s (atypical) movements or behaviour. Along with the diaries, these can help your healthcare provider understand if something requires further scrutiny, and agree on the next steps.

      Take notes before and during your appointments, listing any questions you may have for your doctor.

      If you are feeling overwhelmed, share your thoughts and concerns with your close family members, friends, or support groups.

      References:

      1. National Health Service (NHS). Your baby’s health and development reviews. Accessed via https://www.nhs.uk/conditions/baby/babys-development/height-weight-and-reviews/baby-reviews/ on 26 July 2023.
      2. Ealing Community Partners. Community paediatrics. Accessed via https://www.westlondon.nhs.uk/our-services/adult/ealingcommunity-partners/childrens-services/community-paediatrics on 26 July 2023.
      3. Kent Community Health NHS Foundation Trust. Community paediatrics. Accessed via https://www.kentcht.nhs.uk/service/community-paediatrics/ on 26 July 2023.

      IE-NoP-2400009, July 2024

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