Care book: Tips for daily life after diagnosis and starting treatment

The diagnosis ‘pontine glioma’ is merciless and very hard to accept. Your whole world caves in. As parents, you want to protect your child as much as possible and guide them in the process. We hope that the tips gathered here can give parents some much needed support.

After the bombshell of the diagnosis

Tips from parents

  • Try to keep daily life as normal as possible for your child. Most children need routine and structure.
  • For many people it helps to hold on to the hope that your child belongs to the small group that will survive longer.
  • Focus on what your child can still do.

Treatment

We don’t cover treatment protocols here. That will be done by the responsible doctor. However, almost all children will receive Dexamethasone.

Most children (older than 3 years) will get radiotherapy for a few weeks. Some children also get chemotherapy during or after the radiotherapy.

Some parents and children will be asked if they want to take part in a trial program. Limited information about that trial is available on our website. More information can be requested by mailing ‘info@stichtingsemmy.nl’.

Deciding for or against treatment or participation in a trial

Tips from parents

  • Gather as much information as possible.
  • Treatment can provide temporary relief.
  • Bear in mind the age and ability of your child to make choices.
  • Protect your child from unrealistic choices.
  • Trust your instinct.
  • The comfort of your child is most important.
  • There are no wrong choices!

General treatment

Dexamethasone (Steriodal therapy)

Often prescribed to reduce fluid around the tumour. Dexamethasone has positives and negatives. It helps to remove fluid and therefore improves the symptoms for almost all patients. However it also causes weight gain, behavioural and mood changes and muscle weakness. Your child will have insatiable hunger.

Dexamethasone tastes bitter. It can be easier for children to take mixed into a sweet dessert eg yoghurt or custard. Dissolving in juice often does not work as this still tastes pretty nasty.

Stomach Protectors (PPI’s)

Ranitidine (Zantac) or Omeprazol (Losec) are often given with Dexamethason to protect the stomach. Omeprazol has the advantage that one time per day is often enough. If the child struggles with taking the tasteless capsules, you can open them and scatter the grains with a spoon into a dessert.

Radiotherapy

During the radiotherapy

Tips from parents

Whenever possible try to do something fun around the time of the radiotherapy. Some children will be tired and nauseated but there are others who hardly notice anything. If that is the case, go for a treat afterwards. Take books (puzzle or activity books) to amuse them during the waiting times. Let your child take something familiar (e.g. cuddly toy) and reward him/her for lying still. For example with a new sticker book featuring their favourite cartoon characters.

Some children are too young to understand that they need to lie still. They will be given a general anesthetic for every radiation session. Discuss with the anesthetist what the possibilities are (eg using a intravenous tube that you can leave in for a week).

At the hospital, an anaesthetic cream will often be used to numb the skin before injections. This needs to be done well in advance (from half an hour to one hour before the injection). Some examples are ‘Rapydan’ or ‘Emla’. They can be found at the chemist and at the hospital. An alternative is the ‘banana spray’ with Xylocaine. It works faster but is less effective.

Chemotherapy
During chemotherapy, blood often needs to be taken for checks. Then Emla/Rapydan or the ‘banana spray’ can also be used for the numbing effect.

Physical complaints

This is a summary of physical complaints that sometimes or often appear in the case of children with a brainstem glioma. We explain what causes the symptom, list tips from parents and what medication (in consultation with the medical team) could potentially be given.

Possible side-effects of the medication are listed on this site:

www.kinderformularium.nl
www.drugs.com