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Living with hydrocephalus

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What this section covers

Many people with hydrocephalus have problems in their day to day lives. Some problems may relate to the cause of the hydrocephalus. For example people with spina bifida or cerebral palsy may have physical issues. Not all young people with hydrocephalus have physical problems but they might have difficulty:

  • Getting on with others (social difficulties).
  • Managing how they feel about things (emotional difficulties).
  • Knowing how to act (behavioural difficulties).

This section tackles these issues.

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How problems in everyday life can affect someone with hydrocephalus and those around them

If you face problems every day or many times a day it makes life less enjoyable. It can make you feel less secure and less confident. A child or young person with hydrocephalus may feel like this and so they may become confused or anxious. Families, carers and friends find this stressful too. They may struggle to understand why the person they care about has problems. They might not know what to do to help. Feeling helpless or not knowing what to do can make a situation seem worse.

If you care for or support someone with hydrocephalus, maybe you recognise some of the issues below? Perhaps they have affected you too? By clicking on any of these options you can find out more about:

  • Difficulties that children and young people with hydrocephalus can have.
  • Real life examples of where and when it can go wrong.
  • Hints and tips on how to try and avoid it going wrong, or what to do when it does.

The ideas that we give may not work for everyone. Or, they may work for a while then things change again. There will always be ‘hiccups’. If you are dealing with these difficulties you should try to be patient and understanding, and keep trying (try not to give up).

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Shunt related issues

Shunts and their purpose are explained in more detail in the About Hydrocephalus section. You will also find information about the ‘shunt alert card’ which is readily available from SSBA. These cards tell you more about signs of possible shunt problems. These problems can be sudden and obvious, or they may be more subtle and appear gradually over time.

The ‘shunt alert card’ recommends when you should seek advice quickly. If changes are subtle or more gradual, you might want to discuss these with your young person’s Neurologist or Paediatrician at your next clinic or scheduled appointment.

While some behavioural changes may relate to how well a young person’s shunt is working, other behaviours are just a part of who the young person is. Some behaviour is less easy to deal with but there are ways that life can be made easier and more enjoyable for all.

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Questions you might have

Click on a category below to find out more.

Knowing how to behave

  • Child/person gets extremely angry or upset when I ask them to stop doing something.
  • Child/person gets extremely angry or upset all of a sudden but quickly recovers.
  • Child/person has mood swings.
  • Child/person isn’t aware that they over-react.
  • Child/person isn’t aware how other people feel.
  • Child/person doesn’t seem to realise how their behaviour affects those around them.
  • Child/person doesn’t seem to know how they should act (behave) in different situations.
  • Child/person doesn’t seem to realise when they should change how they are acting (behaving).

Following plans and instructions

  • Child/person doesn’t remember arrangements no matter how often I tell them.
  • Child/person has to be asked to do something over and over again. They seem to ignore me.
  • Child/person seems to listen but then doesn’t do as I ask.
  • Child/person starts a task but then forgets what they’re doing.

Personal organisation

  • Child/person has to be told to do daily tasks such as brush their teeth.
  • Child/person needs to be prompted to get dressed in the morning, even though they are old enough and physically able to do it themselves.
  • Child/person often forgets to do simple things such as taking a book to school or washing his/her hands.
  • Child/person is always losing things.

Getting on with others

  • Child/person gets on better with adults rather than children / people their own age.
  • Child/person often plays alone.
  • Child/person often starts talking before the other person has finished what they want to say.
  • Child/person gets picked on or bullied.
  • Child/person laughs or cries in the wrong situations.

Learning and concentration

  • Child/person finds it difficult to work on one thing and concentrate over a period of time.
  • Child/person takes a long time to learn new information.
  • Child/person has to do things over and over again before they remember it.
  • Child/person is easily distracted.

Flexibility in thinking and doing

  • Child/person has difficulty solving a problem / seeing something in a different way.
  • Child/person finds new situations difficult and upsetting.
  • Child/person gets angry or upset when plans are changed.
  • Child/person gets stuck on one topic for a long time.

Problem solving

  • Child/person doesn’t think before they act.
  • Child/person doesn’t learn from his/her mistakes.
  • Child/person has a ‘melt down’ if something goes wrong.
  • Child/person can’t come up with different ways to fix problems.
  • Child/person doesn’t seem to do simple things. They don’t show initiative.

Ages and stages

  • Some reminders of the things to expect as children grow.

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