A baby with a rash

This blog contains references to specific medication. Trent's treatment was prescribed as part of a personal care plan. If you are struggling with Pityriasis Rubra Pilaris, please contact your GP and/ or dermatologist as each person needs to be assessed on an individual basis.

After giving birth to our son Trent, my husband and I thought we were ready for the challenges of a newborn again. What we weren’t prepared for was Trent being three weeks old and coming out in a rash. What began as small follicular spots and round scaly patches, quickly morphed into big patches of rash that covered large parts of his body. Small islands of sparing were left between the big patches of red - a key characteristic of what we later discovered was Pityriasis Rubra Pilaris. Within weeks, his body was 95% covered and we were dealing with an erythrodermic three month old.

Getting a diagnosis

I knew something wasn’t right and spent countless times at the GP who were adamant it was eczema or an allergy. We got prescribed allergy formula and steroid creams, which gave no relief. Eventually, due to the lack of response to treatment and worrying spread, we got an urgent referral to dermatology at our local hospital. We had a few further misdiagnoses, bi-weekly appointments, failed treatments, multiple professionals and A&E visits due to repeated skin infection. Finally, Pityriasis Rubra Pilaris (PRP) got mentioned. I went home and felt a huge sigh of relief when the Google images finally looked like what we were dealing with. An answer. My relief quickly turned to worry when I read further about the difficulties people with PRP face.

What I thought was just a full body itchy rash, turned out to be a disease that targets the body as a whole. Commonly, patients with PRP lose their hair, struggle with temperature regulation, cannot sweat, experience joint pain, are foggy, tired and many more other physical symptoms. Trent also suffered with extreme dryness, leading to cracking, fissures and bleeding all over - this can severely affect mobility and development. He has to be creamed between 6-8 times a day to try and ease the pain, as well as being wet wrapped at night time. PRP has multiple types, each with differing symptoms and longevity. Trent is still undergoing tests to find out if he is a Classic PRP patient, meaning it was virally induced and symptoms will disappear after 1-3 years, or whether his is Atypical. Atypical is known as the Genetic variation and is associated with a CARD14 mutation - this typically means a lifelong battle, with stages of remission.

Our dermatology team had never seen a case of PRP and this seems common across the board. With the chances being around 1 in 8 million for Atypical PRP, professionals are not experiencing PRP first hand, leading to misdiagnoses and further deterioration before being taken seriously. Treatments vary and due to little research, there is not much proof as to what works. However, common pathways include oral retinoids, methotrexate and biologics. Trent is currently on a retinoid (Acitretin), with the hope of a biologic in coming months to suppress symptoms and allow him a normal quality of life.


Looking to the future

Even after all this struggle, Trent smiles, laughs and enjoys every day. He is your typical 7 month old and loves to play. There is light at the end of the tunnel and treatments have been proven to work - it just takes a while to find the right one, due to PRP varying so heavily between each patient.

Support network

There is a Facebook support group that is worldwide and has been my biggest network for the past six months. They are knowledgable, supportive and passionate about funding and research into PRP. A few members have come together to create a ‘Survival Guide’ which is linked for new members to read through - it has every question you could possibly imagine answered, with personal experiences and advice. It was a key part of pushing me through the harder days and allowing me to feel like I wasn’t the only parent in the world going through this. Hope was restored seeing remission stories and it is helpful to get personal experiences to make us aware of what Trent could be experiencing, and what we could do to help. We are hoping the future is bright and biologics are our saviour. Pityriasis Rubra Pilaris is hard, but the people who fight it are even stronger.

Erienne Thomas on behalf of Trent

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