Impact on Family Life

Physical, mental and behavioural symptoms may change as a young person with Dravet Syndrome goes through puberty and starts to transition into young adulthood. 

These changes can bring a new set of challenges that affect not only the young person but also the entire family.

Below we summarise some of the important changes that you and your family may notice. You can find detailed information and guidance on each of these in our downloadableTransition to Adulthood Guide’. 

A Transition in Symptoms

Be aware that physical, mental and behavioural symptoms may change as a young person with Dravet Syndrome goes through puberty and starts to transition into young adulthood. Seizures may increase during puberty; developmental coordination disorder, or dyspraxia and unsteady gait, may also worsen. Injuries sustained due to seizure-related falls may become more severe. Symptoms of autism may become more prevalent. At the same time, the fight for behavioural support can become more diffcult as the child gets older.

If you have any concerns, raise these with your paediatrician or neurologist and ask them questions about puberty – it will highlight any potential issues and remind them to review these as part of the young person’s appointment

Monthly Periods

For girls with Dravet Syndrome, starting periods can be particularly distressing for the whole family. Seizures may increase before and during periods. Your GP can provide advice around how to manage monthly periods. This may include taking contraception to help reduce the burden of challenging menstruation. Your GP may also refer you onto expert services in sex education and in managing behaviours relating to emerging sexuality.

Emerging Sexual Behaviour and Sex Education

It can be very challenging to talk about sexuality and related behaviours with young people with Dravet Syndrome. All young people experience emerging feelings about sexual needs and desires, and all young people are different. There are experts who can help discuss sex education issues with vulnerable young people in a way that is pitched at the right level for them to understand. You can access support from these expert services if you want to raise specific questions and/or discuss strategies for helping a young person to find good solutions for challenging behaviour.

The sexual health charity, the Family Planning Association (FPA), also has useful resources and support for people with learning disabilities, which you can access here.

Supporting Siblings

Being a sibling of a child with Dravet Syndrome comes with its challenges and its rewards. In the end, all people are different and children need support in different ways. There are often young carers or sibling services, which can be supportive to young people who have a sibling with Dravet Syndrome. If a family is attached to a children’s hospice, there are often sibling support services that can be accessed there. Universal (non-specialist) groups, such as cubs and scouts or a football team, can also be a great support to siblings.

Safeguarding in Perspective

Safeguarding vulnerable young adults is a sensitive issue. The statistics can seem quite scary: people with disabilities are four times as likely to be a victim of sexual abuse and any other crime. It is important to be aware that these young people are vulnerable. If you’re worried that a child or young person is at risk or is being abused contact the children’s social care team at their local council. You’ll be asked for your details, but you can choose not to share them. Call 999 if the child is at immediate risk, or call the police on 101 if you think a crime has been committed.

Guidance and Further Information

Visit our this page for links to organisations who can help and advise regarding each of these aspects of family life and download our Transition Guide.

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