General FAQs

Here we provide answers to the questions that parents have asked about their child's PID.

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. PID UK has resources on conditions and education that can be downloaded here.

It is also worth noting that people with PID are covered under the Equality Act 2010. This means protection under law from unfair treatment relating to a medical condition. Read more here.

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 PID UK 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