Meet Matthew
Matthew was born 5 weeks early with a spontaneous mutation of KRT10 EI without PPK. He spent the first 10 days of his life in the NICU as doctors took biopsies, gave pain medications and antibiotics, and kept him in a humidified incubator. His care was intense for the first few months of his life as the doctors didn’t give us much of a care routine for his skin. He had daily baths, Aquaphor ointment from head-to-toe, bandages wrapped around his whole body, and he was in full body sleeper-suits until he started to walk. He saw a physical therapist from 7 months because he wouldn’t crawl or lay on his belly. By 11 months he decided to skip crawling (too painful and too many blisters) and just decided to walk instead! He has been the happiest kid ever since. He wants to explore this world and lead it with a smile! His skin condition limits him in his activities due to overheating, injury, and risk of infection, however after we moved to San Diego (with a milder climate), he has grown so much and has become a great runner! He does need to take breaks in the shade, take a water or spray bottle with him and sometimes sit out on PE or other outdoor activities, but he sure won’t let it stop him!
Matthew’s Care Routine
Matthew’s skin care has evolved so much as he has grown. As a baby it was very intense and required multiple applications of lotions and creams. As he has grown, we have adapted his care to better suit his needs both physically and emotionally. Every morning Matthew wakes up and takes a shower. We use Dove and a loofah to try to remove as much of the nighttime Aquaphor as we can. He prefers not to put on lotion during the day unless there are dry parts of his skin. His nighttime routine consists of a long soak in the bath (30-45 minutes) followed by an intense scrubbing of the skin with a Microdermamitt (takes about 30 minutes). Sometimes we can get off a whole pound of skin! We wash his hair daily as well with special shampoo to help break up the excess skin growth on his scalp. Then we take some time to clear the skin from his face with a cloth. We also clean his ears and dry his hair. He gets Tazorac topical gel (helps decrease build up) as needed on the thicker parts of his skin and then Aquaphor ointment on all skin below his head. He puts on full body fleece pyjamas and socks until it’s time for bed. Recently, he has been removing his fleece jammies since he gets too hot at night and sleeps in briefs, on top of washable blankets, to make cleaning the bedding an easier process. He takes oral Acitretin (a medication very similar to Accutane) to help reduce skin growth, Hydroxyzine (to help with itching), and vitamin D daily.