General FAQs
Here we provide answers to the questions that parents have asked about their child's PID.
Q. I’m worried that when my child transfers to adult services, I won’t know what is going on and how to help/encourage him/her to take his/her medication etc. Can you advise?
A. Transition between paediatric and adult services, describes a process by which a patient moves from child centred to adult centred care. In child centred care, whilst the patient is the focus of clinical discussion, depending on age and maturity many of the decisions and discussion will be with and led by the parents. Transition is a precursor to transfer to an adult service and during the period of transition a child will normally become progressively more involved in their own care, taking a more active role in decision making and responsibility for their own treatment. Transition will start at different ages depending on the clinical situation and the relative maturity of the child. For some children transition is effectively complete before transfer to adult services and for others it is only just starting in any meaningful way. The major difference at 16 years in England a young person is assumed to have the capacity to consent and therefore to decide on whether they wish their parents to be involved in the health care. Health workers are not allowed to tell parents about anything they have talked about with over 16s unless they have a child’s permission. This doesn’t mean that you no longer have, or no longer should have, an important role to play in supporting your son/daughter. The process of transition can seem daunting for young people and their parents and should continue after transfer into the adult service. It might be helpful to talk this through with your team who are there to help you all adjust.
Q. Having recently applied for an EHCP for my child it has been turned down. Are you able to help me?
A. Whilst we don’t have a benefits advisor we do have access to guides from Benefits and Work and the Child Law Advice as we are members of these organisations and are happy to send you these guides. If you would like to receive appeal guides please email hello@immunodeficiencyuk.org.
Q. My child is being bullied, can you help?
A. Bullying is defined as “Behaviour by an individual or group, repeated over time, that intentionally hurts another individual or group either physically or emotionally” and unfortunately with the development of technology ‘cyber bullying’ is becoming more common. We can send you the Child Law Advice guide on bullying if you email us at hello@immunodeficiencyuk.org.
Q. My child is being discriminated at, at school because of her PID. I feel this is wrong. What can I do?
A. When a problem arises with a school or Local Authority, both parents and carers can address the problem informally and formally to resolve the problem. If you would like the Child Law Advice guide on ‘Claiming Disability Discrimination in Schools’ please email us at hello@immunodeficiencyuk.org.
Q. We have a child affected by PID. We want another child but worried that they will have it to. What advice can you give?
A. This is something you should discuss with your immunology team as it depends on the type of immunodeficiency involved and how it is inherited. Your centre will be happy to advise you and may signpost you to a genetic counselor. This booklet on the 'Genetics Aspects of PID' may be of help.
Q. How do we discuss with nursery and school the topic of our child who was successfully treated for X-linked SCID when he was 6 weeks old. Should we have an EHCP drawn up?
It is worth you speaking to the nursing team who helped with your son's treatment as they will seen this situation before and will be able to advise as to what your next step should be. Your son’s nursery and your local authority can also help advise you. You may decide that rather than an EHCP you create your own plan of what to do if your child gets ill or hurt or there is a contagious illness amongst the other children.
Q: My son’s school is arranging a school trip, which our immunology nurse has advised he should not go on. The school is going to mark this as unauthorised absence if he does not go but this doesn’t seem right, is it?
A: Yes this is unfair and it is worth mentioning to the school that the Department for Education has statutory guidance indicating that it is inacceptable practice to penalise a child for their attendance record if their absence is necessitated by their medical condition. The school should be receptive to the medical advice your immunology team has given, which should be reinforced by a letter to the school explaining the reasons why the trip is unsuitable. There is a statutory duty on schools to support pupils with medical conditions and schools should have in place a medical support policy. This policy should cover how to best accommodate a child’s participation in school trips if they have a medical condition. A practical step forward could be for your son to go to school and the school provide an alternative activity. Please take a look at this Guide for Schools to help your son’s school understand more about the impact of his PID.
Q: My daughter/son has been diagnosed with IgA deficiency by their paediatrician but they won’t refer her to an Immunologist? Should they be referred?
A: In general IgA deficiency is asymptomatic - although it may be associated with an increased risk of autoimmunity e.g. Coeliac disease. Up to 1 in 500 healthy blood donors are completely IgA deficient. We would not recommend referral to an immunologist solely on the basis of low or absent IgA, but rather, on a clinical history of recurrent, severe or invasive infection, which is otherwise unexplained.
IgA deficiency alone would not explain severe recurrent infection and if your child suffers from these then immunology review may be appropriate. If you wanted to ask for a second opinion then have a look at this section of our website, which gives an overview of your rights.
Q. My child has MBL deficiency and has to take antibiotic but we are concerned about antibiotic resistance. What do you advise?
A: Good antibiotic stewardship means that all doctors are working to minimise the use of these medicines and only prescribe them when the benefits outweigh the risks. Preventative antibiotics are the ‘least aggressive’ strategy in managing a mild immune deficiency such as MBL deficiency. Please take a look at our booklet on ‘Use of antibiotics in the treatment of PIDs’.
Q: Do you have any resources to help me explain my PID to my child?
A: We have copies of the Medikidz comic on primary mmunodeficiencies, which we would be happy to send to parents to help explain the condition to their children. Please email us to ask for a copy.
Q: I think my child has a PID but I’m not sure what to do to get a diagnosis?
A: Ask your GP to run a blood test to check your child’s immunoglobulin levels and have them referred to a Paediatrician. The Paediatrician will then look at your child’s blood results and decide whether a referral to an Immunologist should be made.
Q. My young child has just been diagnosed with IgA deficiency. What resources can you offer?
A. We have a booklet on this condition that can either be downloaded or posted to you.
Q. My child is at university and in the last few months have been too ill to complete exams and coursework. What can we do?
A. All universities will have an extenuating circumstances policy that your son or daughter should look up. This policy is there to assist students who may encounter significant personal difficulties outside their control such as ill health. Many universities can put into place adjustments to support study and assessment.
It is also worth your son or daughter making an appointment with their course leader to explain their circumstances as soon as possible into the year or even before the course starts. If their course teachers know their circumstances from the start they can put in place structures to help them. This can all be done in confidence.
It may be worth taking information about the condition to this meeting so they have all the information they need. Immunodeficiency UK has resources on conditions and education that can be downloaded here.
It is also worth noting that people affected by immunodeficiency are covered under the Equality Act 2010. This means protection under law from unfair treatment relating to a medical condition.
Q. My child has a PID and just started school this year. I'm
worried that the school will not understand my child’s primary
immunodeficiency. What advice can you give?
A. Any parent of a child with PID should speak to their
specialist nurse and/or Dr to ask for a school care plan to give the
child’s school in conjunction with our information leaflets.
Q. How cautious and “germ conscious” do I have to be with my child with primary immunodeficiency? Can we go shopping, to the cinema? Should my child go to school?
A. These are questions that need to be addressed with your immunologist. Obviously contact with someone who has active signs of illness (fever, cough, etc.) should be avoided. But children who are receiving immunoglobulin replacement therapy to provide them with protection against infections can live relatively normal lives. This includes going to school, interacting with their peers, playing sports, and doing other age appropriate activities. From a psychosocial and developmental perspective, these activities are very important to children. Every attempt to incorporate their immunodeficiency into a “normal” childhood should be made as opposed to having a childhood centered on their immunodeficiency.
Updated April 2017