What Causes CIDP and How is it Diagnosed?

Although sometimes a trigger is apparent, and in contrast to GBS, most patients with CIDP cannot identify a preceding viral or bacterial infection. GBS normally progresses over 2-4 weeks, then plateaus, improves over several months and does not usually recur. CIDP has ongoing symptoms for over 8 weeks and usually does not improve unless ongoing treatment is given.

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 How is CIDP Diagnosed? ​

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CIDP can be difficult to diagnose as there is no single, conclusive diagnostic test for it. The symptoms are often vague and can be produced by a number of different conditions.

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Therefore, a long period of time may elapse before a diagnosis of CIDP is made. A diagnosis of CIDP requires the following:​​​

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• Weakness of at least two limbs

• Complete or partial loss of tendon reflexes

• Progression or relapse eight weeks or more after initial disease onset

• Evidence of myelin damage in the peripheral nerves from nerve conduction studies

• A diagnosis of CIDP is usually made on clinical grounds but with evidence from:

• Nerve conduction studies

• Lumbar puncture

• MRI scan

• Nerve biopsy

• Ruling out other diseases that can cause demyelinating neuropathy

• Family history to completely rule out an inherited neuropathy

• Contact with possible toxins or drugs that could cause neuropathy

• Other conditions – diabetes, alcohol dependency, arthritis or hepatitis

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 Nerve Test (EMG, neurophysiology)

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To measure how your nerves are working, a specialist clinical neurophysiologist usually does these two tests at the same time.

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• nerve conduction studies (NCS) – mild electric shocks are given through the skin to activate the nerves and measure the signals travelling along your arms and legs.

• electromyogram (EMG) – tiny needles are inserted into several muscles to record their electrical activity. This can show if there is damage to the axons.

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In people with GBS or CIDP, these tests will usually show that signals are not travelling along the nerves properly.

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 Lumbar Puncture ​

A lumbar puncture is a procedure to remove some fluid from around the spinal cord (the nerves running up the spine), known as cerebro-spinal fluid (CSF). It involves lying on one side and having a needle inserted into the base of the spine under local anaesthetic.

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The sample of fluid will be checked for signs of problems that can cause similar symptoms such as an infection.​​

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Occasionally the diagnosis can be delayed for a few days while they are checking the results, and your doctor may start the treatment just to be on the safe side.

 My child has been diagnosed with CIDP 

My Child has been Diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), what do I do?

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Although more common in adults, CIDP can affect anyone of any age. 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.

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If you would like to talk to another parent of a child affected by CIDP, please contact Inflammatory Neuropathies UK, and we will arrange contact with one of our support volunteers.

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The following information has been adapted from TheSchoolRun: an online resource for parents of children at primary school
 

More detailed information is published online by Contact a Family.​

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 How is Your Child’s Condition Managed? 

 What is Paediatric Intensive Care? 

 Things You Can Do To Help 

 Going Home 

 Back to School 

• BTS Catching Up With Work

• BTS Fitting In

• BTS Individual Healthcare Plan

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 How is your Child's Condition Managed? 

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Diagnosis, treatment and recovery will follow a similar path for children as for adults. 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.

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It is important your child is treated in a centre familiar with CIDP 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.

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People likely to be involved in your child’s care:

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• 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 Dieticians, Health Care Assistants, Family Liaison Nurses, Play Specialists, Chaplains and Interpreters.

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 What is Paediatric Intensive Care? 

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A small amount of children with CIDP will initially become so weak that they cannot breathe without the support of a ventilator. This may require a stay in Paediatric Intensive Care, it's similar to adult Intensive Care, but the staff (many of whom are listed above) specialise in working with young people. 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.

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 Things You Can Do To Help 

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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.​​​

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 Going Home ​

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There are ways of helping children to cope and adjust to what is happening to them. 

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Doctors can prescribe medication to counter pain. Rest, relaxation, massage and physiotherapy are all helpful.

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Occupational therapists will discuss the suitability of the home environment and tell you how to access any specialised equipment that might be needed.

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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.

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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.

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 Back to School ​

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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.

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 Returning to School: Catching Up With Work 

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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.’

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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.

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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.

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 Returning to School: Fitting In 

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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.

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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.

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‘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.’

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 Returning to School: The Individual Healthcare Plan 

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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:

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• 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​.

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‘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.

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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.

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Before your child returns to school, arrange a consultation with headteacher and SENCO to explain what if any limitations they have.

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 What is the advice on CIDP   and vaccinations 

What is the advice surrounding vaccinations and Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP)?

Professor Michael Lunn MA MBBS FRCP PhD, Consultant Neurologist and Professor of Clinical Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London advises:

“One vaccine is not the same as another. The only reason that one advises against flu vaccine in someone with GBS is if they actually had GBS in the 6 week window after a flu vaccine and then only out of an abundance of caution which is not based on any real science. The rate of GBS after flu vaccine in all assessed years after 1976 has been about 1 per million and no study has linked vaccination to recurrence of GBS or CIDP. COVID vaccine is nothing like flu vaccine.  Although there have been a small number of people who have developed GBS for the first time following the COVID vaccine, the risk of serious illness and complications from COVID are greater.”

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Live attenuated vaccines should be avoided by anyone whose immune system is suppressed, due to taking corticosteroids to treat CIDP for example.

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             IN simple terms: Live Attenuated 

Live attenuated vaccines use a weakened (attenuated) version of a pathogen (bacteria or virus) to stimulate an immune response without causing illness in healthy individuals.​ 

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Most people don’t need a flu jab. However, if you are in an at-risk group, or you live or work closely with people for whom flu might be severe or life-threatening, then you should be vaccinated, to protect yourself and others.

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On vaccinations in general, our Medical Advisory Board advises:

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• DON’T have unnecessary vaccines for travel but DO have all travel vaccines that are recommended for the particular area you are travelling to.

• DO have all vaccines that are ‘necessary’. This includes the flu vaccine (if you are in an at risk group), MMR, DTP, HIF, COVID-19, etc. There are monitoring programmes ongoing so a link would be picked up if it occurred. 

• COVID-19 is a more serious disease than influenza and more easily caught. Most people with GBS or CIDP should receive any of the COVID-19 vaccines, except perhaps people with a history of severe allergy.

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Vaccines currently in use are amongst the safest medicines available. However, there is no simple ‘yes or no’ answer, and each person must weigh up the risks of not having a vaccination against the very small possible risk from having it.

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Having relatively mild side effects such as numbness and tingling is quite common following a vaccination, and is almost certainly nothing to be concerned about. If you have had GBS in the past, or if you have an associated chronic neuropathy such as CIDP, a vaccination might cause a slight ‘flare-up’ of symptoms due to your immune system being stimulated. Most will only last a few days, but if they last longer than this, or if symptoms get worse or start spreading, then I would suggest contacting your GP.  Anyone can report side effects of medication or vaccines, regardless of severity, and if you would like to do so, please follow this link: https://coronavirus-yellowcard.mhra.gov.uk/​