Care book: General physical complaints

Tiredness

Often occurs during radiotherapy, but also during chemotherapy or phases of tumour growth.

Tips from parents

  • Try to let your child go to school for as long as possible, even just for short periods. Some children like it if one of the parents can stay with them at school (to help etc)
  • Get a wheelchair that reclines so your child can lie down in it
  • Put a bed in the living room.

Trouble getting to sleep or night-time waking

  • This can be due to a disrupted sleep pattern but also due to anxiety.
  • Often occurs as a side-effect of Dexamethasone.

Tips from parents

  • Listen to music or read stories at bedtime
  • Take turns sleeping with your child
  • Place a baby-phone next to your child’s bed

Anxiety

Consider psychological treatment. Potential medication (in consultation with your doctor) such as

  • Melatonin – natural sleep hormone
  • Oxazepam – a type of sedative
  • Weight gain – occurring due to Dexamethasone

Tips from parents

  • Try to give healthy food, but don’t feel you shouldn’t be able to give your child treats.

Excessive sweating – sometimes occurs due to the tumour

Tips from parents

  • Use an air-mattress with extra good circulation

Pain / headaches

Can occur due to tumour growth

Pain Control Medication (options consultation with your doctor):

Ask advice from your doctor about dosage, preferably before a situation with pain arises, so that you can be ready to give something. Consider:

  • Paracetamol (pill, drink, suppository)
  • Diclofenac (pill, suppository), Ibuprofen (drink)
  • Tramadol (pill, suppository)
  • Morphine/Oramorph (syrup, suppository, skin patch, IV pump)
  • Fentanyl (intravenous via pump or skin patches)
  • OxyContin (pill, >12 jaar)

Sedatives – to provide calming or sleep-inducing effects
Tips from parents

  • Can occur due to tumour growth

Symptoms of paralysis

  • Nothing is worse that the powerless feeling that your child is deteriorating and you can’t do anything to help. Trust your own instinct and act when it’s really not going well. That’s why it is important to have painkillers and other drugs in the house on time (in consultation with your doctor) such as Morphine and Midazolam.
  • Consider & discuss this with your doctor, preferably before the need arises e.g. Midazolam

Medication options (in consultation with your doctor):

  • Lift together. You can get lifting methods from the ‘Thuiszorg’ (Home help department)
  • Order or loan lifting or walking aids early (and explain to the supplier that this differs from most orders for wheelchairs as the patient can deteriorate very fast)

Depending on the age of your child and on the severity of the paralysis, consider getting the following items:

  • Feeding cushion
  • Walking frame / walking aid
  • Three wheel bike (with pedal support)
  • Normal buggy (with feet support like you’d have for a bike)
  • Buggy
  • Transport bike (bakfiets)
  • Simple wheelchair (with table)
  • Electronically adjustable chair
  • Wheelchair with table and head-support, if possible rotatable
  • Higher or lower bed
  • Special mattress against bed-sores
  • Urine bottle
  • Shower-seat, with adaptable settings, bath-seat, bath-lift
  • Handles (with suction cups) for beside the toilet
  • Tooth-brushing can be done in the wheelchair with a kidney tray under the chin and a water-spray for rinsing
  • Sling for arm-paralysis

Stomach complaints

Constipation (hard stools). Often occurs due to less physical activity but can also be due to chemotherapy.

Tips from parents

  • Prevent constipation by giving medication at the first sign. This can avoid a lot of pain.
  • Make sure your child drinks plenty
  • Add laxative powder in tea or juice
  • Use Purol, Vaseline or Lidocaine salve on any anal tears
  • Use Forlax or Movicolon (powder sachets, with plenty of water to ensure that water comes to the intestines)
  • You can experiment with the quantity by keeping a note of the results. Don’t be afraid to increase the dosage. The only thing that can happen is that your child can get diarrhea. Then you know that you’ve given too much and can reduce the dose the next day.
  • If you give enough Forlax or Movicolon, you should not need any other medication.
  • Sometimes you might need to use Klysma, Microlax, Bisacodyl or Cleanprep.

Nausea and sickness can occur as a result of

  1. Raised pressure in the head due to tumour growth or swelling due to the treatment (especially in the morning)
  2. Reducing dosage of Dexamethasone too quickly
  3. Chemotherapy or Ketogenic diet

Tips from parents

  • Children often feel this coming
  • Keep a bucket or plastic bags to hand
  • Sometimes a drain is needed (ventriculostomy)

Medication for nausea (anti-emetics in consultation with doctor):

  • Dexamethasone (reduces swelling and nausea) – in case a or b – consider increasing or reducing the dosage more slowly
  • Ondansetron (Zofran) General anti-nausea medication(In case c. or in addition in case a or b & when Dexamethasone has a limited effect)
  • Metoclopramide (general anti-nausea medication)
  • Kytril (general anti-nausea medication used commonly in conjunction with chemotherapy)

Mouth & throat complaints
Co-ordination difficulties while eating (bringing food to the mouth, problems swallowing or chewing)

Tips from parents

  • Often occurs due to tumour growth.
  • Get special cutlery from ergo-therapist (at hospital or revalidation centre)
  • Remove distractions while eating
  • Puree food. Add apple mousse or water or juice. Try soup or Olvarit snacks
  • Often bread is not easy to eat, try cornflakes with milk
  • Try prawn crackers instead of crisps, fried fish, thin noodles
  • Use baby-bottles or tumblers with double hand-grips
  • Drink with straws, spoon, syringe or pipette
  • Add a thickening agent e.g. Nutilis power or Nutriton
  • Desserts are often easier but milk products can cause too much mucous. Try switching to soya products.
  • If necessary, switch to intravenous feeding (in consultation with doctors)

Excess mucous in the mouth
Often occurs due to tumour growth and makes it difficult to swallow.

Tips from parents:

  • Wipe mucous away using a piece of gauze round your finger

Medication (from doctor):

  • Glycopyrronium
  • Scopalamine
  • Atropine

Dry mouth – oral mouth care
Tips from parents

  • Moisten with small plant syringe
  • Vaseline to moisten lips

Pain during swallowing (sometimes due to radiotherapy)
Tips from parents

  • Avoid spicy foods
  • Try the homeopathic medicine, Vinceel: protects the mucous membrane

Changes to taste sensation
Sometimes due to radiotherapy or chemotherapy

Lockjaw sometimes occur due to tumour growth

Tips from parents

  • Give thin, flat food eg. squashed chips, flatbread

Medication (in consultation with doctor)

  • Liorsal
  • Artana

Excess hunger – Side-effect of Dexamethasone

Tips from parents

  • Try to limit to what you feel ok with yourself

Speech problems
As the illness progresses, communication issues start, because the child cannot talk (well) any more. 

Tips from parents

  • Use pictograms
  • Try a speech computer
  • Make your own photo-albums with pictures of objects/people/activities in your daily life, so that your child can point to what he/she means. See examples below.

Irritation due to swollen airways or nasal membranes

Can be caused by radiotherapy

Medication (in consultation with your doctor):

  • Antihistamine (for example, Nasonex or similar spray)

Tightness in chest
Can also be a sign of a lung infection

Tips from parents

  • Can be caused by excess mucous due to reduced swallowing
  • Get / borrow a bed with adjustable base
  • With help from a physiotherapist loosen the mucous so it can be coughed up
  • Suction (electric)
  • Oxygen at home if needed

Medication to aid lung secretion (in consultation with doctor):
To reduce excess mucous:

  • Glycopyrronium,
  • Acetylcysteine,
  • Scopoderm patches
  • AtropineTo reduce feelings of tightness in chest:
  • Morphine/Fentanyl patches

For a lung infection:

  • antibiotics Can be caused by excess mucous due to reduced swallowing

Medication (in consultation with doctor):

  • ‘Rattling’ breathing
  • Glycopyrronium
  • Scopalamine
  • Atropine

Tips from parents

  • Seeing double
  • Problems with vision
  • Provide an eye-patch
  • Cover one of the lenses of glasses

Inability to close eyes properly, resulting in dry eyes

Medication can provide some assistance (in consultation with doctor):

  • During the day administer Methylcellulose eye-drops
  • During sleep apply Oculentum simple ointment under an eye-plaster
  • Vidisic carbogel: this keeps the eye moist and the ointment feels pleasant

Bladder problems
Needing to pass urine often at night (common side-effect of dexamethasone)

Tips from parents

  • Urine-bottle next to the bed
  • Use nappies

Urine retention
Occasionally problems with urine retention can occur (inability to empty the bladder properly), causing incontinence and urine infections. Catheterisation might be needed.

Medication (in consultation with doctor):

In the case of repeat infections, a daily low dose of antibiotics can help, for example Cotrimoxazol (Bactrimel).

Epileptic attacks
Can occur (rarely) due to the tumour

Medication (in consultation with doctor):

    • Midazolam nose-spray
    • Valium (using anal enema) Pasty skin, acne, thin sensitive skin, easily damaged, bruising or discolouration.

Tips from parents

    • Potential side-effect of Dexamethasone (or chemotherapy).

Skin problems

  • Smooth Weleda baby or bio oil into skin
  • Wear loose-fitting clothes
  • Air-mattress with good circulation

Homeopathic remedies:
There are positive messages about the use of homeopathic ‘ruta grav 6C Tendonitis’ and ‘Calc Phos 3x Dentition’. There is a doctor in India, Dr. Prasanta Banerji from the PBH Research Foundation, that you can contact for advice on dosage quantities (email: pbhrf@vsnl.com). The pills taste ok and melt in the mouth.