Neurological Problems Paediatric Palliative Care For Home Based Carers Funded by British High Commission, Pretoria Small Grant Scheme
Neurological Problems The child s nervous system may be damaged through: Opportunistic Infections in the nervous system The direct effect of HIV on the nervous system The side effects of ARVs Different parts of the nervous system may be involved
Neurological Problems Slow Progression Some neurological problems occur very slowly You may notice these occurring gradually over time A parent may report changes in behaviour and physical ability Referral is necessary Fast Progression Some neurological problems occur very quickly The child is extremely sick Immediate Referral is vital
Signs and Symptoms Depend on which part of the Nervous System is involved Range from: minor developmental disabilities to severe and progressive disorders of the brain Can have severe consequences for the child Usually associated with a very weak immune system May be the first sign of HIV in some children
Growth & Developmental Delay HIV may affect a child s normal growth and development Signs and Symptoms Severe growth delay Loss of ability to learn or understand Loss of ability to walk or sit upright Loss of ability to speak in the same way TALC
Growth & Developmental Delay Assess regularly: Growth Head circumference Developmental age Language skills Compare these with normal findings for age Refer for appropriate management Support and education for the family about what to expect and how to care for their child TALC
HIV Encephalopathy A disorder of the brain involving: Impaired brain growth Loss of muscle control Loss of ability to walk or sit Involuntary movements or spasms Unable to feed themselves Usually affects both sides of body TALC Loss/ arrest of developmental milestones Loss of ability to learn, understand, sit upright, walk, speak
HIV Encephalopathy Progression and severity varies Some children have episodes of improvement or stabilisation but do eventually deteriorate Other children stabilise and remain in that condition TALC
HIV Encephalopathy Assess for: loss of ability to control muscles loss or arrest of developmental milestones Refer for appropriate management Assist with: ARVs if prescribed Muscle relaxants Passive exercises Ambulation and mobility Providing information to family regarding progression of disease Application for child dependency grant
Muscle Disorders Signs and Symptoms Muscle pain Muscle weakness Increasing difficulty walking Sensory disturbances Urinary incontinence Assess child TALC Refer for appropriate management Support and education for child and family with what to expect and ambulation, exercises, general care
Peripheral Neuropathy A disorder of the nerves in the hands, arms, legs or feet Caused by damage to the nerves by HIV or ARVs Signs and Symptoms Numbness Tingling Mild to severe, debilitating pain This may be very distressing and painful Children may not know how to describe this sensation Refer for appropriate management Assist child and family with symptom relief and ambulation
CNS Infections If the child s immune system is extremely weak, OIs may infect the Nervous System eg bacterial meningitis, cryptococcus, herpes simplex and CMV Signs and Symptoms Fever Persistent, severe headaches Dislikes light Nausea and vomiting Confusion Unstable Seizures Behaviour/Personality Changes Doesn t recognise main carer Coma TALC
CNS Infections If Ceftriaxone available, give stat IM dose For seizures: If diazepam available, give stat dose Refer for appropriate management
Tumours Children with HIV may develop tumours in the brain Signs and Symptoms: Headaches, nausea, vomiting Visual Changes Instability Difficulties with coordination Motor deficits Refer for appropriate management
Seizures Infections and brain tumours may cause seizures NB Not all children having seizures have nervous system damage (eg fever may cause seizures in young children) Signs and Symptoms: Collapse Eyes rolling upward Foaming at the mouth Stiffening of the body Uncontrolled jerking movements Breathing difficulty (in severe cases)
Handling Seizures Keep calm and Reassure care giver Ensure area around child is clear and safe Never restrain the child or place anything in the mouth Loosen clothing around neck and body Position child with head lower than body if possible Do NOT put anything in the child s mouth The child may lose consciousness but will usually come round without help If the convulsion lasts longer than 5 minutes, the child needs emergency help Administer rectal diazepam if available
Summary Children with HIV need you to: Recognise signs and symptoms of neurological problems Identify serious problems requiring immediate referral Assist with management of children with neurological problems Assist carers with practical care of children with neurological problems in the home Make regular re-assessments of the child s condition Liaise with the multi-disciplinary team