Many children with a primary immunodeficiency require regular treatment. This can include regular infusions of immunoglobulin, which involves needles to get the medicine into the body. Some children find it difficult to get used to having regular infusions and go through ups and downs with accepting the treatment. As a parent, this can be extremely hard to witness, even if you are convinced that the treatment is definitely helping your child’s physical health.
Dealing with needles and infusions
If your child has had even a few difficult experiences of needles, it can be hard for them to ‘forget’ these and so they begin to feel anxious well before the procedure itself, and become frightened and panicky. It is very difficult for young pre-school children to understand the long-term benefit of the treatment and why the short-term discomfort is necessary, so reassurance and explanation are often not enough to help them overcome their fears. As your child grows up, this understanding will help them accept the treatment. There are no foolproof ways to helping your child accept infusions, but learning and practising the best possible needle technique is an important step.
Most parents learn to do infusions themselves after a period of training and support. This can seem intimidating at first but it does minimise the time spent in hospital and often gives you more control over the situation. Getting into a consistent routine, and trying to keep to a minimum your child’s distress both before and during the time the needles are going in, is the best long-term strategy. If you find you get very upset yourself at your child’s distress, then it can be helpful to share this task with your partner or a close family member.
If you need support, ask for it!
Feelings of stress and anxiety do not help you or your child, so do not be concerned about asking for support with infusions from your nursing or medical team. They or Immunodeficiency UK may be able to put you in contact with another parent who has managed this process themselves.
This information was written by Dr Penny Titman, Consultant Clinical Psychologist, Great Ormond Street Hospital for Children, London (January 2014).