Being a parent of a child with eczema can be difficult, a constant regime of creams and treatments and doctors appointments. It can also often feel very lonely, especially if you have nobody to talk to, nobody who understands what childhood eczema involves. Today, we’re hearing from Amy, who knows what parents of infant eczema sufferers go through all too well.
Hello my name is Amy, I am 24 years old, and live in Surrey with my 2 children Stephen (age 4) and Bethany (age 3).
I have had a lot of experience with eczema, as my daughter Bethany has a rare skin condition called ‘Photo Aggravated Eczema’. This condition means that she is allergic to UV rays and her skin blisters, burns, gets covered in rashes and is very, very itchy.
She has had a lot of problems since the day she was born. At 6 months old we were told that she was allergic to milk and soya. Then at 1 and a half Bethany’s skin got really bad and she had scars all over her body where she had torn herself apart. Six months after that Bethany was diagnosed with the Photo Aggravated Eczema which we are still struggling to deal with today. Recently she has been diagnosed with lots of other different allergies, such as Wheat, Egg, Nuts, Fish, Cats, Dogs, Penicillin, Dust. And she is also having severe heat reactions and is currently under Great Ormond Street Hospital for further diagnosis.
Day to day life is a very big challenge. UV rays and heat are very difficult to avoid so Bethany lives in body suits, bandages and wet wraps. Bethany doesn’t sleep very much due to her skin being so sore and itchy and is always in and out of hospital. She has a dermatology specialist, a dermatology nurse, and an allergy specialist in our local hospital. There is also a paediatric dermatologist in Great Ormond Street, and a photosensitive specialist at St. Thomas’s Hospital. She has recently been referred to a dietician but unfortunately we are still struggling.
Bethany is on a lot of different medication daily, she is creamed every 2 hours with 3 different creams. She is also on a high dose of an antihistamine but, due to her immune system being low her body gets immune to all the treatments very quickly. This means we are always swapping and changing.
I have bought three wet wrap suits for Bethany to help cool her skin; this is how I heard about the blog for eczema. I have been offered a place as blog ambassador, which I am very honoured and so happy to accept so I can try and give others advice. And it is always nice to get advice back too, because I know what it’s like when to feel alone and that nobody understands what you’re going through. People do and I’m here to prove that to you.