My Child has been Diagnosed with Guillain-Barré Syndrome (GBS), what do I do?
Although more common in adults, Guillain-Barré syndrome can affect anyone of any age. The encouraging news is that children tend to be less severely affected than adults, and in most cases make a very good recovery. Even so, it is distressing for any parent to see their child debilitated by illness, and we hope that knowing a little bit about what to expect may help, especially in the early stages following diagnosis. Don’t forget your child needs to be told what is happening and will be reassured by familiar faces and voices.
If you would like to talk to another parent of a child affected by GBS, please contact GAIN, and we will arrange contact with one of our support volunteers.
The following information has been adapted from TheSchoolRun: an online resource for parents of children at primary school:
https://www.theschoolrun.com/catching-up-at-school-after-absence
More detailed information is published online by Contact a Family: https://contact.org.uk/advice-and-support/education-learning/attendance-absence-medical-needs/help-at-school-if-your-child-has-medical-needs/
How is your child’s condition managed?
Diagnosis, treatment and recovery will follow a similar path for children as for adults, and are covered elsewhere in this booklet. Paediatric services tend to be very self-contained, and you will have access to support that you would not experience in an adult setting. The following information is specific to differences between adult and paediatric services.
It is important your child is treated in a centre familiar with GBS and with intensive care facilities should they be required, so they may be moved to a hospital you do not routinely use. Most of your child’s care will be ‘supportive’ for breathing, feeding, bowel or bladder functions. Physiotherapy is needed to ensure good joint mobility and to keep the chest clear.
People likely to be involved in your child’s care:
- you, your child and your family
- paediatric nurses and nurse practitioners, doctors and neurologists
- paediatric intensive care nurses and doctors
- neurophysiologist, who does the nerve conduction study
- physiotherapists, to help with movement and breathing
- speech therapist, to help with feeding and communication
- occupational therapist, to help maximise recovery
- clinical psychologist
Other staff you may meet could include dietician, health care assistants, family liaison nurses, play specialists, chaplains and interpreters.
What is paediatric intensive care?
Around 10% of children with GBS will become so weak that they cannot breathe without the support of a ventilator. Understandably this can be a frightening situation for a child who is still fully aware of everything going on around him or her. Parents and carers must provide the child with all the positive support needed to avoid unnecessary trauma.
Things you can do to help
Even if they can’t respond verbally, your child will be conscious (unless placed in an induced coma for a time to reduce stress and anxiety) and can hear what is being said. Talk about things that matter to your child (a pet, the football results, family events, messages from friends, etc). Bring a favourite soft toy for them to cuddle. Your child may become extremely frustrated especially if he or she cannot speak. Try to work out ways of communicating, such as picture cards that they can respond to by touch, blinking or pointing with their eyes or pointer on a headband. Ask the paediatric team for support in communicating with your child if they are non-verbal.
Rehabilitation and outcome
The majority of children make a full recovery from Guillain-Barré syndrome without any lasting signs of having had the condition, but a small number may have some persisting problems, such as weakness of the hand and foot muscles. Most recovery is seen in the first six to twelve months, but gradual improvements can continue for five years and beyond.
Keep in touch with school, and once your child is on the road to recovery, ask their teachers for any resources they can access to help them catch up with what they would have been doing at school.
Going home
Although recovery can be a long and drawn-out process, there are ways of helping children to cope.
Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful.
Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed.
Hydrotherapy and swimming can be very beneficial, as the water is weight-bearing allowing freer movement. Consider going for a family bike ride once your child is strong enough, and even look at an activity such as horse-riding, as this can help with balance as well as the psychological benefits associated with being around animals (contact ‘Riding for the Disabled’, https://www.rda.org.uk/). Exercise is much easier when children are engaged, so it helps a lot if it is something fun and enjoyable. Since children are usually very active and move around without thinking, observing what they do naturally is a good indicator of their capabilities.
Your child may feel the cold and get tired more easily, or they may lose their appetite or complain of things tasting different. The trauma of GBS may also have an effect on their mood or behaviour. They may become frustrated, angry and upset at not being able to do everything that their friends can, and that they could do before. All of this is normal. It is important to listen to them, understand what they are feeling, and try to find things that will help. Be patient. These problems are temporary and will improve with time, but talk to your GP if you are concerned and feel further support is needed.
Back to school
Thousands of children live with health issues that involve long periods of absence from school. At some stage, these children will face the unenviable task of going back to school and reintegrating into their former class and its usual daily routines. Catching up with work and friendships can often be difficult, but a good school will do all it can to ease your child’s passage back into school life.
Returning to school: catching up with work
When your child is ready to return to school, the thought of catching up on weeks of missed work can be daunting. But, says Lesley Black, special educational needs (SEN) advisor at the charity Contact a Family, ‘no school will want to overwhelm a child who has been unwell or dealing with difficult circumstances by expecting them to do extra homework or catch up on work during playtimes.’
Schools may prioritise catching up with work in maths and English – the core subjects – over other subjects. It’s quite common for schools to have small groups of children who need support with numeracy or literacy, and children who’ve been away from school will often slot into one of these. They may be given extra one-to-one help by a teaching assistant (TA) to help them catch up.
If you want to give your child a boost at home, speak to their teacher about how you can best help, such as games-based learning activities online that consolidate maths and English skills, or practical things you can do like reading aloud and cooking together. However, be aware that if your child has been ill they might find the school day very tiring, and may not be up to doing much homework.
Returning to school: fitting back in
Despite the fact that schools are under increasing pressure to ensure children achieve, your child’s school is likely to be far more concerned about their wellbeing as they return to school. Your school should help your child to keep in touch with their classmates while they’re absent, for example through visits, emails, letters or video calls. They also have a duty to help your child reintegrate once they’re well enough for school.
Your child may feel awkward if they’re bombarded with questions about why they’ve been away. Sometimes, they’re so reluctant to draw attention to themselves that they put up with discomfort or distress rather than asking a teacher for help. Some children, however, are happier with everything out in the open and even like to stand up in front of the class to explain what’s been happening. If your child has a specialist nurse or a social worker, they may be happy to visit the class, either with or without your child, to answer their classmates’ questions.
‘It’s important that schools are sensitive about your child’s needs when they’re considering what information to share with their classmates and the wider school community, and that they make sure your child has someone they can ask for help,’ Lesley says. ‘This could be a school counsellor or the special educational needs co-ordinator (SENCO) rather than their class teacher.’
Returning to school: the Individual Healthcare Plan
A key part of your child’s return to school after illness may be the creation of an Individual Healthcare Plan. This is a formal document that sets out things like:
- What their condition is
- What medication they take
- Who, in the school community, can administer their medication
- What to do in an emergency
- Arrangements that need to be made to enable your child to attend school, such as a quiet rest area
‘You and your child should be central in drawing up the individual healthcare plan,’ says Lesley. Other people involved in your child’s care may also be involved, such as their GP, paediatrician or specialist nurse. The plan will identify if anyone needs to be given special training to administer medication or otherwise help care for your child at school. If so, someone from your child’s medical team is likely to arrange this.The plan should be reviewed regularly, and at least once a year.
Depending on the level of recovery or any residual disability, it may be necessary for your child to return to school in a wheelchair, and school facilities should be checked to make they are suitable for your child’s needs. A welfare officer from the local education authority (LEA) can visit to arrange adaptations, and can sometimes provide equipment for use in schools. Like any other institution, the ability of the school to cope depends on the willingness of those involved, as much as the building’s design and facilities.
Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have.
Welcome to our Guillain-Barré Syndrome Information Hub.
Here we breakdown what is happening to you or a loved in simple but proper terms. Our information is sourced from our Medical Advisory Board, medical texts, and recognised support providers.
If you have any questions after reading this that you feel haven’t been answered. Please get in touch with us, we will strive to point you in the right direction.
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Contains information on condition management, paediatric intensive care, how you can help, rehab, going home, and an indepth look at return to school.
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Containing information on various treatments for GBS. We explore what may happen in the ICU (such as pain management and ventilation information) and how you can help someone with GBS during their stay (such as mental stimulation, keeping them calm, help coming off the ventilator).
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