• May be present in the terminally ill child and should not be ignored
• The clinical picture will depend on the age and development of the child
• Diagnosis may be difficult: trust the instincts of parents and carers and consult a child psychologist at an early stage.
  Many children with life limiting conditions have communication and/ or learning difficulties. The may experience higher rates of depression and anxiety but present in less usual ways, meaning recognition can be challenging.

Management

General measures

• Provide support as above
• Provide an environment and the opportunity for the child to raise their concerns and fears
• Consider complementary therapies for parents and children – eg play, art, music.
  May be particularly beneficial for non-verbal children
• Offer counselling and complementary therapies to parents if possible

Sources of support

These will vary from region to region, but if you are not sure where to start looking, support comes from voluntary and NHS sectors. Often particular diagnoses will have their own support group/information service: for example the Muscular Dystrophy campaign covers all neuromuscular diagnoses and has family care officers in many regions of the U.K. Child disability Social workers are a great source of knowledge and may also know about supported holidays, young carers associations, and wish foundations.

Together for short lives (TfSL) is also a good source of information with accessible family resouorces online and a database of resources available by area. Finding support for parents may be more challenging. Parents of children with cancer can access many of the Cancer charity counseling and support services across the UK as these services often provide support to relatives of those with cancer. Contacting your local Adult Palliative Care team may be helpful as they may be able to signpost you to services that will support adults & carers.Local childrens hospices may be aware if other local support programmes.

Medication for Anxiety

Lorazepam

Form

Tablet: 1mg (scored), 2.5mg.
Suspension: only available as ‘special’
Injection: 4mg in 1mL, 1 mL ampoule

Dose (sublingual, oral)

< 2 yrs: 25µg/kg b.d.- t.d.s.
2–5 yrs: 0.5mg b.d. –t.d.s.
6–10 yrs: 0.75mg t.d.s.
11–14 yrs: 1mg t.d.s.
15–18 yrs: 1–2mg t.d.s.

Well absorbed sublingually (good for panic attacks) and child has control. Injection can also be given sublingually.

Contraindications and warnings: severe pulmonary disease, sleep apnoea, coma, CNS depression. Caution in hepatic and renal failure.

Licence: tablets licensed in children >5yrs as premedication. Injection not licensed in children <12yr except for treatment of status epilepticus.

Diazepam

Form

Tablets: 2mg, 5mg, 10mg.
Oral solution: 2mg in 5mL and 5mg in 5mL.
Injection (solution and emulsion): 5mg in 1mL.
Suppositories: 10mg.
Rectal tubes: 2mg in 1ml: 2.5mg tube, 5mg tube, 10mg tube.

Dose (oral)

Potential for dependency in prolonged courses.

Licence: rectal preparation is licensed for use in children >1yr with severe anxiety. Tablets and liquid licensed for night terrors and sleep-walking

Midazolam

Form

Injection: 10mg in 2mL; 10mg in 5mL.
Injection may be diluted if required, in sodium chloride 0.9% or glucose 5%.
Injection can be used for buccal, intranasal, oral or rectal administration.

Oral syrup and Buccal liquid. Epistatus® is a sweetened, sugar free midazolam formulation containing 10mg/ml; it is packed in 5ml bottles with 4 x 1ml oral syringes and instructions for use.

Dose

By oral or gastrostomy administration for anxiety:

Contraindications and warnings: caution with pulmonary disease, hepatic and renal dysfunction (reduce dose), severe fluid /electrolyte imbalance and congestive cardiac failure. Avoid rapid withdrawal after prolonged treatment.

Licence: licensed for sedation in intensive care and for induction of anaesthesia in children > 7 yr. Other routes and indications not licensed.

Levomepromazine

Form

Tablets 25mg, 6mg tablets available.via specialist importation companies. Injection: 25mg in 1mL, 1mL ampoules
An extemporaneous oral solution may be prepared
Injection: 25mg in 1mL, 1mL ampoules

Dose (oral)

2-12yr: 0.25-1mg/kg o.m. - b.d.(maximum 25mg/24h)
>12yr: 6.25-25mg o.m. - b.d. (maximum 50mg/24h)

Haloperidol (restlessness or confusion)

Form

Tablets: 0.5mg, 1.5mg, 5mg, 10mg, 20mg.
Capsules: 500µg.
Oral liquid: 1mg in 1mL, 2mg in 1mL, 1mg in 5mL (special)
Injection: 5mg in 1mL, 1mL ampoule; 10mg in 1mL, 2mL ampoule.

Dose (oral)

Child 1 month–12 years: initial dose of 50µg/kg/24 hours (initial maximum 3mg/24hrs) in divided doses. The dose may be increased as necessary to a maximum of 170µg/kg/24 hours in divided doses Child 12-18 years: 10–20µg/kg every 8–12 hours; maximum 10mg/day.

Licence: licensed for use in children.