Managing Treatment Resistance and Stress in Young People with Ichthyosis

Zoom session 15 September 2022

On-line Q & A session with Dr Rukshana Ali (Paediatric Clinical Psychologist) and Dr Susannah Baron (Consultant Paediatric Dermatologist) both of the Paediatric and Adult Psychodermatology Service, St John’s Institute of Dermatology at St Thomas’s Hospital, London

This Zoom session was hosted by Mandy Aldwin-Easton (ISG Director)

Advance notice of this session had been shared to all our members via our website, social media and also via email, inviting them to join us to ask their questions and discuss their concerns with Dr Rukshana Ali and Dr Susannah Baron.

Mandy opened the call at 10.00am to 6 members who had previously submitted their questions.

Q1 - Mum of a 9 year old boy asked, ‘How do you encourage a 9 year old boy to apply his creams when he is away from his family?’. Background information supplied during this session is that the boy’s school is very supportive and staff understand the severity of his condition and his need to keep his skin regularly creamed. It appears that his lack of willingness to absent himself from the classroom is that he doesn’t want to miss out on anything.

A1 – This isn’t uncommon with young children when they start to take on the responsibility of applying creams themselves. You should start encouraging them to help with their routine at a young age (try ‘joining the dots of cream’). Always make sure the school is fully aware of the circumstances and importance of this task. Encourage his classmates to talk about his ‘special’ skin, thereby normalising (or de-shaming) it. Try reward charts (offering stickers, TV or extra screen time, etc). Try hard to make the creaming routine a positive experience and constantly discourage any negativity. To make the creaming routine easier and less time-consuming, emollient sprays are available – Aquaphor by Eucerin is available to buy over the counter (but not available on prescription) and Emollin spray is available on prescription.

Q2 – ‘How do you manage the question, ‘Why do I have to put creams on and nobody else does?’.

A2 – This is a very tricky question, but ichthyosis isn’t the only condition when regular treatment is necessary. Explain to the child the great benefits they achieve with regular applications – the young person needs to have an understanding of their condition. Try giving them a choice, so that they feel they have some control. Allow them to choose what works for them. Remind them that we all have to do things we don’t enjoy – like brushing teeth. Always try to link creaming routines to a positive action – we NEVER grow out of enjoying a reward.

Q3 – How do you help a child with a phobia of needles? With this 9 year old’s visits to the dermatologist always comes the need for blood samples to be taken. This has led to him dreading his appointments. He is petrified of medics lancing his blisters with needles, so pops them himself, using his nails. Following his appointments he is fine.

A3 – Try playing with toy medical equipment. Ask for numbing cream or spray to be used before taking the bloods. Try to ascertain exactly what part of the procedure is causing such a reaction. Involve the child in the process (wiping down the area, for example) in an effort to hand back some control. Try breathing exercises with the child. Is it possible to always have the same person taking the bloods so that the child is able to develop a relationship with him/her? Ask if it is possible to have the blood samples taken at least a few days before the dermatology appointment.

Phlebotomists are usually very skilled at distracting the child; play therapy often helps.

There are many resources available to help with anxiety: 2 such organisations are (commissioned by the NHS), or Mindful gNATs (check out For more links to resources see below.

Q4 – How can you manage anxiety over going to new places where nobody understands a child’s skin problems?

A4 – The organisation Changing Faces ( have many suggestions on how to deal with these situations easily and quickly and in a manner that will close down further questions. This amazing organisation now offers one-to-one support appointments, but these are very popular so will need to be booked in advance. They also run a number of on-line sessions.

Q5 – A 4 year old boy doesn’t want to apply creams.

A5 – Once again, make the child’s creaming routine a positive experience, with games such as ‘join the dots’. Explain the benefits of regular treatment and try offering rewards (sticker charts, favourite TV programme, etc).

Q6 – Mum of a 5 year old girl asks how best to acknowledge negative comments from the child. She hates being pink with all her extra skin. Mum and Dad try using the opportunity to talk about differences. They reassure her that they know it’s tough for her, but they both love her and her skin.

A6 – Try working with the school to acknowledge all her good aspects, skin is only one aspect – there are many more. Talk about the appearance of an onion – a dry, scaly exterior, but many layers of perfect onion underneath. Talk about other people with other, less obvious, conditions. Try to develop the child’s self-esteem to give themselves a more balanced view of themselves.

Further advice was given to help alleviate the ‘itch’ that is such a huge issue with ichthyosis: try a cold water stream to cool and relieve the itch; a cool pack wrapped in a towel; reward periods of no scratching.

Useful website links:

Changing Faces - Workshops for families and children

Kooth - Your online mental wellbeing community

Mindful Gnats App in the Play Store

Mindful Gnats App in the App Store

Watch the recording by clicking below