Pre-school

Pre-school

Medical reviews by community paediatrician- The preschool years

(see Appendix 43 for Checklists in DS according to age)

PLEASE ENCOURAGE PARENTS TO BRING THE PCHR (personal child health record) TO EVERY APPOINTMENT

PLEASE ENCOURAGE PROFESSIONAL TO DOCUMENT THEIR FINDINGS IN THE PCHR (red book)

All the therapies (physiotherapy, SLT, OT and the dysphagia team) form the Barnet Children’s Integrated Therapies.

Missed appointments

Parents/carers need to be aware that all services have a policy to discharge following 1 or 2 non-attendances.  As children with Down Syndrome have complex needs (health and developmental) it is vital families engage with all services provided.  If there is a situation where the child’s needs are not being met because parents are not engaging with professionals, this will need discussion with the family and team around the child, and strategies put into place to support the family.  Sometimes we may need to involve outside agencies to also support this engagement, like social care, to benefit the child.

Appointments take place at Edgware Community Hospital, or at Underhill children’s centre (BIG-DS). Initial appointments are 90 minutes and follow ups are 45 minutes.  See Appendix 45 - for resources to make hospital visits easier.

For each appointment, ensure that the following takes place:

Notes review:

  • Review of the hospital notes and any discharge summaries.

  • Look for any interim admissions to hospital – enquire specifically about infections. (Appendix 12)

  • Any concerns regarding hearing and vision as identified by the neonatal team, parents or educational setting (Appendices 6 and 7)

  • Collate information from tertiary centres / GOSH.

History and discussion:

  • Enquire specifically regarding medical problems known to be associated with Down Syndrome and take every opportunity to remind families and carers of “red flag” symptoms.

  • Perform a full feeding history and assess for risk of aspiration, GORD - and treat according to NICE or local policy guidelines.  Ask specifically for coughing after feeds, choking or wheezing episodes (see Appendix 3 for Red Flags)

  • Screen for signs and symptoms of Diabetes (See Appendix 40)- Children with Down’s syndrome are four times more likely to develop diabetes than other children, so about 1 child in 60 with Down’s syndrome will also develop diabetes. It has been reported that, as a group, children with Down’s syndrome tend to develop diabetes earlier than other children in the general population

  • Developmental progress 

  • Check sleep patterns including any signs of sleep disordered breathing (see Appendix 13).  Any red flags for sleep apnoea such as snoring, sweating, gasping, excessive restlessness, mouth-breathing, daytime somnolence. A video of them sleeping and the noise/sounds associated is very useful which can be at naptime or night time.

  • Signs of constipation or other bowel problems.  See Appendix 14 to evaluate further – history, examination, triggers, management and treatment, use Bristol Stool Chart to help). http://dsagsl.org/wp-content/uploads/2012/11/gastrointestinal_problems.pdf

  • Ask about family and social history and support network.

  • Take time to listen to any parental concerns and watch any videos they have recorded on personal devices that have been concerning them including sleep concerns or unusual movements. 

  • Encourage families to attend our DS hub in Underhill children’s centre. There are weekly early intervention groups led by the Early Years SEND Advisory Team, multidisciplinary input from other allied health care professionals (physiotherapy, Occupational therapy (OT), dentists etc) and the opportunity to meet other families.

  • At each clinic attendance ensure parents are aware of the ‘red flags’ for cervical spine instability, and that they should seek immediate medical help if they are present (DSMIG guidelines, Appendix 21)

  • Remind families and GP’s of the importance of aggressively treating sepsis. Where sepsis is suspected, they need to be seen immediately, and treated with appropriate antibiotics. Doses may need to be increased or prolonged, discussion with the hospital based paediatricians on call is recommended.  If recurring infections occur, consider antibiotic prophylaxis in discussion with a respiratory paediatrician and seek to find an underlying cause. (See Appendix 12)

  •  Promote the flu vaccine and immunisation schedule (See Appendix 12)

    • Annual influenza vaccine via GP/practice nurse (from 6 months to 2 years this is the inactivated injected form, after 2 years it is the nasal flu vaccine)

    • Pneumococcal vaccines – an additional pneumococcal immunisation is now universally agreed (from Autumn 2019 onwards) for every child with Down Syndrome and not only those at “high-risk:” Via GP/practice nurse.

    • Age 2-5 yrs: single dose of Pneumovax II (at least 2 months after final dose pcv – usually given at 2, 3, 4 and 13 months as routine in the UK) 

    • Age > 5 years: single dose of Pneumovax II (PPV 23) (should not be repeated within 5 years). 

Examination

  • Plot growth & OFC on Down Syndrome Growth Chart in notes and in Red Book (PHCR). (See Appendix 8 on growth charts) Rapid weight gain (from 1 year) should prompt check of Thyroid function

  • Developmental Assessment/milestones

    • Griffiths developmental check or SOGS (Schedule of Growing Skills) – highlights can be found in the PCHR (Personal Child Health Record, also known as the Red Book with the extra green insert for DS).

  • Social communication skills.

    • Cardiovascular examination. Rarely, echocardiography, particularly in the first few days after birth, may fail to diagnose AVSD and other major shunt lesions. Hence there should be a low threshold for repeating this investigation if symptoms or signs of cardiac disease are detected at any age even in the presence of ‘normal’ early echocardiogram.

  • Respiratory examination

    • Aspiration, viral induced wheeze.

  • Skin

    • (looking in particular for signs of thrombocytopenia).

  • Neurological

    • Look for any signs of cervical spine instability or cord compression.

    • Lower limb alignment and foot position when weightbearing e.g. standing, walking.

  • ENT

    • Signs of middle ear disease or upper airway obstruction

    • Eyes - Squint, cataract, nystagmus or blepharitis. Nasolacrimal duct obstruction sometimes needs referral. 

  • Dentition

Investigations

Thyroid Function:

Venepuncture at age 6months, 1 year and annually thereafter throughout life - To check T4, TSH and thyroid antibodies.   (See Appendix 20)

Where the T4 is normal and the child is asymptomatic but there is a mildly raised TSH (less than or equal to 10mu/l) or thyroid antibodies are present re-check after 6months. A specialist opinion may be warranted.

Have a low threshold for testing thyroid function at other times if clinically indicated eg lethargy and/or changes in affect, cognition, growth, or weight. Testing should be continued throughout lifetime. 

If the child is already under the endocrinology team on Thyroxine supplements, please leave monitoring of TFT’s with the endocrine team.

Cardiology:

Seen locally by paediatricians with a specialist interest in cardiology in Barnet unless there were any abnormalities prompting expedited tertiary referral. Every baby needs a minimum of one echocardiogram by the paediatric cardiologist in the hospital

Feeding/Aspiration:

Liaise/communicate with paediatric dysphagia team (SALT) if any RED FLAGS or concerns; much of aspiration in DS is silent and thus difficult to detect on history alone. Specifically, aspiration must be actively excluded in any child with respiratory issues above what would be expected for any normally developing child with the use of videofluoroscopy. Help with prescribing special feeds or thickeners if needed and liaise with GP for ongoing prescribing if any issues.

Respiratory:

Overnight oximetry is required for asymptomatic children with the paediatric homecare nurses at 6 months of age, then 12 months of age and annually thereafter until 3-5 years of age. (Appendix 13 and 5). Nurses email community paediatrician the reports/trace – we need a minimum of 4 hours to have value. Discuss with respiratory lead at local hospital or with respiratory consultant at GOSH if concerns or help in interpreting. Refer onto tertiary centre for a formal sleep study if screening oximetry shows signs of SDB (both the baseline saturations overnight and desaturations). Please note the oximetry is a screening test and is being used in ASYMPTOMATIC children with Down Syndrome as we know even in this group there is a significant risk of missing SDB which can have health and cognitive effects. The SYMPTOMATIC group would have been referred to tertiary ENT or sleep services without this oximetry screening. (See Appendix 13 for research, current thinking and discussions Dr Ella Rachamim has had with key professionals in this area). In Barnet we have a Nelcor oximetry machine and software.

Gastrointestinal:

Consider coeliac screening

Test for coeliac with the antibody test (TTG with a TOTAL IgA (a blood test)). The child needs to be on an adequate amount of gluten (should be on a gluten-containing diet >6g/day) to validate this test. Discuss with paediatric gastroenterologists at RFH if you are unsure). The alternative option is to carry out HLA testing (a blood test), which does not require the child to be on sufficient amounts of gluten.  This will give us an indication if the child is in a group that may go on to develop coeliac disease or is in a group that will not, in which case we only need to watch the first group and have a low threshold for repeat testing using TTG as they grow.  This HLA test can be organised through the Anthony Nolan laboratories (Referral Form)

Immunology:

Consider immunological investigations – can discuss with local consultant immunologist, Tel 020 7830 2141 (Ext 34519). (See Appendix 12)

Check the above immunology tests at:

Any review if ‐ with ≥ 4 infections in 6 months requiring GP visits/ill-health > 5 days OR admission for sepsis OR any review with unusual infection.

Timing of immunology blood tests: at least 1 month after completion of the 12month routine Hib/MenC/PCV booster immunisations.

Note: Immunoglobulins, Functional Antibodies, Pneumococcal Antibodies, Lymphocyte subsets are checked routinely in some boroughs so have a low threshold to consider doing these or to discuss.

Haematology:

  • Consider check of Ferritin and iron studies if nutritional concerns (or restless sleep reported which could be iron deficiency and need ferritin above 50, ideally).

  • TAM requires ongoing surveillance until age four with FBC and blood film.

Nutrition:

  • Consider check of vitamin D, calcium, bone profile if nutritional concerns (aim for vitamin D above 75).

Referrals

Paediatric Alert:

  • Ensure an alert is added to the patient’s electronic medical record. If not, inform officer manager/secretaries at CDT. The alert ensures the child is seen by the paediatric team if presenting to the Emergency Department.

Growth/Feeding:

  • Consider dietician referral for faltering growth and need for nutritional supplements.

  • Discuss infant feeding/breastfeeding support at local children’s centres (Barnet Breastfeeding Project Coordinator, Appendix 10)

  • Dysphagia service at GOSH for assessment of feeding including a videofluoroscopy (via SLT). There are also options for paediatric VFSS (videofluoroscopy) at the Royal Free hospital.

Upper Airways Obstruction or Sleep disordered breathing (SDB):

  • Refer to ENT at GOSH

  • Consider referrals to the Sleep Service at GOSH if worries about Sleep disordered breathing (SDB). Alternatively, The Evelina children’s hospital for sleep services

Respiratory:

  • Consider referrals to Respiratory team at GOSH if worries about recurrent respiratory infections or persistent oxygen requirements or local Barnet/Royal Free paediatrician with a respiratory interest 

  • Refer to hospital consultant or neonatal outreach nurses for RSV prophylaxis, in season, for those with a significant cardiac left to right shunt, according to local criteria (See Appendix 16)

  • Homecare nursing team for an overnight oximetry investigation (referral form in Appendix 5).

Many of these services overlap, in particular sleep can be affected by respiratory, ENT and feeding issues, and it can be hard to work out which referral is best. In the local setting we have access to home based overnight oximetry (but not any more detailed sleep studies) which can be helpful for screening for SDB. We also have access to infant feeding assessments +/- VFSS but these can be difficult to obtain locally sometimes. Therefore, with this in mind, consider discussion with local and tertiary teams about the best way forwards e.g. GOSH sleep service works closely with respiratory and ENT so they can be a good starting point.

Audiology:

  • Follow-up is required for 8-10 months. Hearing (at 8-10 months) test should Include a full audiological assessment including thresholds, impedance and otoscopy.  Referral by Form to Audiology at EGH.

  • Refer for further check at 15-18 months and yearly follow up thereafter (usually as the child will already be in the audiology DS pathway, by letter to paediatric audiology team at Edgware General Hospital). (Appendix 23) To discuss with the team, speak to Consultant in Audiovestibular medicine. Referral by Form to Audiology at EGH or email: paediatric.audiology@nhs.net   Tel: 020 8732 6224

Ophthalmology:

  • Any concerns over visual development, refer to Consultant Ophthalmologist, Eye Clinic at Barnet or EGH or RFH (whichever hospital is closer to the patient)

  • Refer, by letter, for full ophthalmology assessment by 18 months (and repeated routinely at 4 years unless otherwise indicated Appendix 24) – by letter to Consultant Ophthalmologist, Ophthalmology department at Barnet hospital.  For nasolacrimal duct obstruction also refer.

Dental:

Endocrine:

  • Local endocrinology referral for any children requiring thyroxine.

Diabetic:

  • Local follow up for any children diagnosed with Diabetes

Gastroenterology:

  • Any child with coeliacs or other gastrointestinal related problems - RFH or Barnet paediatrician or GOSH

Immunology:

  • Recurrent infections - Please refer to ‘Immunology guidance for children with Down Syndrome’ for reference and investigations- Appendix 12.

Orthotics:

  • If any concerns regarding feet rolling inwards (valgus ankle), refer to orthotic department for suitable ankle/foot support. (See Appendix 25 for referral form, can also discuss with their physiotherapist first).

Orthopaedics:

  • If lower limb alignment is excessively abnormal e.g severe valgus knees or feet refer to orthopaedic consultants for monitoring.

Social Care:

  • Referral to Social Care/ 0-25 Disabled Children’s Team might be of benefit too (Referral form – Appendix 17) for early support/universal services assessment. 

Therapy Services:

  • Ensure physiotherapy input ongoing, especially if any particular concerns about motor development including extreme hypotonia.

  • Ensure ongoing dysphagia team involvement as needed and get updated.

  • Referral to appropriate therapy if indicated (contact the relevant therapy department for referral criteria if required) e.g. Occupational therapy.  The form is the same as in Appendix 1 and also has the contact details for advice.  Barnet Children's Integrated Therapies (CIT) (whittington.nhs.uk)

Letters to the GP:

In addition to your full report, include:

Vaccination recommendations: recommended extra vaccinations (See Appendix 12) – annual flu vaccine and the extra pneumococcal vaccine and remind GPs that chickenpox can be more problematic in this group of children (presents differently and can cause more serious complications so need more careful monitoring).  There will also be routine letters being distributed around Autumn to GPs to remind the about these vaccinations due for ALL children with Down Syndrome. Ideally too, ensure that these children are given the first batches of flu vaccine that is made available for the GPs.  If there is a history/investigations showing immunocompromise, then the chickenpox (VZV) vaccine is recommended.

Reminders to check for symptoms of atlanto-axial instability and complete and update the screening form or document in your report.

Additional considerations at 3 month review

Notes review:

  • Cardiology – initial echo findings and ensuring appropriate follow up in place.

  • Collate information from physiotherapist and dysphagia team initial assessment reports and from the Early Years SEND Advisory Team.

  • Ensure all required professionals are involved including physiotherapist, Early Years SEND Advisory Team, SLT, Health visitors, hospital paediatrician.

  • Ensure there are no missed or outstanding appointments from hospital discharge.

  • Hospital paediatrician: Discuss with the hospital based team - do they still need to see the family or can they cancel their appointment with all future medical care coordinated by community paediatrician?

History and Discussion:

  • Are there any unusual movements or spasms? (consider Reflux and consider infantile spasms/West syndrome and refer for an EEG (Appendix 15A) +/- referral to consultant paediatrician with a neurology interest at Barnet Hospital)

  • Discuss infant feeding and recommend upright feeding to reduce ear inflammation/otitis media and gastro-oesophageal reflux disease (GORD). Explore thoughts around weaning.

  • Careful counseling with explanation of the condition, including genetics of the condition and associated medical conditions.

  • Enquire as to how the family have adjusted to the diagnosis and offer support as required.

  • Make sure a red book insert has been given to parents.

  • Signpost again to local resources and contact details of Down’s Syndrome Association, if not already known.

  • Discuss Disability Living Allowance (DLA and Carer’s allowance. This is often more successful when applied for at 6 months of age but it is good to start the process as it is rather lengthy. Early Years SEND Advisory Team, MENCAP and Barnet Carers are all able to help with this (see Appendix 2)

  • Social support services – Consider referral to Social Care/ 0-25 Disabled Children’s Team (Referral form – Appendix 17) for early support/universal services assessment.  The Multi-agency safeguarding hub (MASH) looks at referrals and can decide which services are most useful for the family.  This may be for support for families, therapeutic work around bonding and relationships, support for siblings, a family support worker, help with benefits, housing, social concerns, later on for clubs and activities, short breaks, respite and so on.

  • Encourage parents to take videos of any behaviour or concerns they have.

Examination:

General physical examination

  • Eyes: Check for cataracts – check red reflexes and document, fixing and following and visual behaviour, check for squint and for nystagmus

  • Investigations:

  • Check results of chromosomal testing.

  • Check results of TSH on Guthrie card.

  • FBC and blood film - Has this all been checked and managed accordingly by the hospital paediatric team.

  • Does it need discussing with the haematologist? (See Appendix 4 – haematology guidance).

  • Check that Neonatal Hearing test has taken place and act upon any results that require follow up.

  • Ensure cardiology assessment is completed – every baby needs a minimum of one echocardiogram by the paediatric cardiologist in the hospital

Additional considerations at 6 month review

History and discussion:

  • Discussion around weaning onto solids in liaison with the paediatrician/feeding team/SLT +/- dietician. Usually guided by these professionals as to when to start and how to progress with textures. It may be delayed if concerns around aspiration and food may need thickening. If the baby was born prematurely, ensure professionals are aware so they can advise accordingly.

  • Report back thyroid results (See Appendix 20 for advice).

Investigations:

Additional considerations at 1 and 2 year reviews

History and discussion:

  • Have a low threshold for investigation of coeliac disease – see Appendix 14. Any constipation? Pain? Fluctuating bowel habit? Concerns around weight?

  • Triggers for constipation - consider: pain (e.g. a fissure), fever/dehydration, dietary intake (in terms of fibre content), other medicines, other conditions and family history of constipation. Psychological issues and expression of distress?  Toilet training/aversion? (See Appendix 14 for treatment)

  • Behaviour and social communication

  • DLA and other benefits

  • Dental hygiene and tooth brushing

  • Therapy and educational input – e.g. Makaton signing through The Early Years SEND Down syndrome advisor or local signing groups

  • Down Syndrome advisor leads on discussions and timings of nursery provision, EHCP planning and also about special educational needs inclusion funding (SENIF).

  • Discuss sleep hygiene and routine, daytime naps, night-time wakenings and sleep onset difficulties? For ongoing sleep issues and sleep onset or overnight wakenings – consider if this could be medically related eg GORD, aspiration, OSA, SDB +/- behavioural component.

Ensure you have checked the following:

  • The child is not having excessive sleep in the day (catching up on poor night-time sleep quality) or not enough naps or naps that are too late in the day interfering with bedtime.

  • There are no clear environmental causes for night wakenings (like loud noise or light).

  • There are no behavioural cause/sleep associations affecting the child from learning to self-soothe (such as rocking the child to sleep or allowing the child to fall asleep on the breast or bottle). Eg. The child learns to expect the rocking in order to get to sleep, so wakes up and cries as they do not know how to self-soothe and rely on the rocking to get back to sleep.

Some sleep problems can be improved with good sleep habits (sometimes called sleep hygiene). 

These are some general strategies that may improve the person’s chances of a good night’s sleep:

  • A nightly consistent routine at bedtime

  • A bedroom that is free of distractions (eg cut out any unwanted light or noise).

  • Regular sleeping hours

  • Regular exercise and activities

  • Avoidance of caffeine and other stimulants in the evening

  • Some people have been helped to sleep by a soundtrack of calming sounds.

  • Sleep diary can be helpful too

For children specifically:

  • Watch for daytime naps – is this age appropriate? Timings? Are they interfering with nighttime sleep? Remember too car journeys or nursery/school transport – is the child nodding off? 

  • Look up how much sleep is needed (it is a range) for the child’s age and how long it is recommended for the child to stay awake for before going down for a nap (if still having naps).  Use this knowledge to plan the daytime routine into chunks of time.

  • Use this knowledge to help learn and look for sleep cues

  • Encourage the child to fall asleep on their own when DROWSY but not actually asleep, so they learn to self-soothe themselves.

Further support and resources:

Useful resources:

Toileting guidance:

Behaviour guidance;

Understanding Behaviour - Downs Syndrome Association is an excellent guide for parents

Referrals 

Refer to Speech and language therapy at age 2 years if not already known to them (sometimes they will have been known by the paediatric dysphagia team which is run by speech and language therapists with a feeding specialism but they also need to be referred to the other part of their team, the Speech and Language service). Use form from Appendix 1.

  • Makaton signing through The Early Years SEND Advisory Team, Underhill groups or local signing groups.

  • Ensure Child known to Inclusive Education team/Educational psychologist (refer by letter to SEN and EP teams, separately, North London Business Park).

  • Specialist Teams – D&HS (Deaf & Hearing Support Team), PD&CN (Physical Disability & Complex Needs Support Team), SSTV (Specialist Teaching Team, Vision) (BELS), Barnet Education and Learning Service, 3rd Floor, 2 Bristol Avenue, Colindale, London NW9 4EW.  D&HS email: D&HS.Team@barnet.gov.uk    PD&CN email: pd.team@barnet.gov.uk   STTV email: VI.Team@barnet.gov.uk

  • Referral to CAMHS for psychological support if required (referral form, see Appendix 27)

  • Consider Occupational therapy referral for ongoing sensory needs or fine motor skill difficulties impacting on their activities of daily living (See OT criteria for acceptance, Appendix 28).

  • Dental referral if not done before - the best time to see a patient is as soon as teeth come through. The British Society of Paediatric Dentistry recommendation is at age 1. (Referral information -Appendix 22).

  • If concerns about social communication (a small number of children with DS can have a dual diagnosis with ASD), discuss with other professionals and family about referral to TAASC forum (Team Assessing Autism and Social Communication) and usually the child’s community paediatrician takes the lead here (referral via TAASC form or through child development team referral, can also discuss with the lead paediatric community consultant for the ASD pathway at Barnet child health HQ/CDT, see Appendix 1 for contact details and forms).

  • Referral to Social Care/ 0-25 Disabled Children’s Team might be of benefit too (Appendix 17 for referral form) for early support/universal services assessment. 

Additional considerations at 3 and 4 year review

History and discussion:

  • Enquire about school choices and liaise with the Early Years SEND Advisory Team.

  • Discuss future follow-up with parents and refer to designated community paediatrician, for ongoing medical reviews on an annual basis (School based Down Syndrome clinic at Edgware General hospital, Chase Farm Hospital and special schools).  The 5th and subsequent annual reviews continue to be carried out by community paediatricians.  If the child is going into a special school then this will be with Dr Ella Rachamim and if the child is going into a mainstream school this would be with Dr Christine Jenkins.  There are some children who are shared, or under other community consultants or who do not fit this model of care exactly, but from 2019 onwards this is the plan in Barnet.  This is discussed with the parent/carer.

  • Children will be discharged from individual services when appropriate with agreement with parents/ carers for example often physiotherapy services will discharge the child before they start school, if walking and reaching developmental appropriate milestones. However, it is important to check the child’s development at each review by the paediatrician and other professionals involved and refer back to the appropriate team if concerns e.g. if gait issues develop, investigate and refer back to physiotherapy if needed.

  • Referrals:

  • Hip screening – for any child not yet weight bearing (3+) request hip x-ray and ensure physiotherapy input. 

  • Referral to Specialist feeding team/SALT if on fluid thickeners and previously discharged as feeding was stable – consider an assessment of feeding prior to school and to help with transition e.g. if child is on thickeners for food and/or fluids, this needs to be put into a mealtime individualised guideline and school staff need training in how to make up and use the thickeners.  SALT team to liaise with dietician (rf-tr.bcfhdieteticpaeds@nhs.net) and SENCO and school nursing team to ensure these needs are properly documented.  (See Appendix 30 – guidelines on thickeners).

  • Referral to Occupational therapy to assess school-based needs e.g. seating and positioning in class or in lunch hall, any additional equipment needed to support feeding or writing or learning.  Social care OT may also be needed within this assessment.

  • Consider referral to CAMHS if needed - a good contact to discuss the child with the child psychologists or psychiatrists based at SCAN (Service for Children and Adolescents with neurodevelopmental needs - a subservice of CAMHS) on 02087024500 or email.

  • If concerns about social communication, discuss with other professionals and family about referral to TASC forum (their community paediatrician to take the lead here).

  • Social care referral for support? Short breaks?

  • Referral to specialist school nurse/mainstream school nursing team for children starting school (see Appendix 29) with additional health needs in mainstream schools e.g. if gastrostomy or needs continence support.