Hi mums, I'm Chloe's mummy, she's 17 months old and has Nethertons - and boy, is it hard work or what. I was told when she was diagnosed that the first year would be difficult. Difficult was such a gentle word to use, its been a nightmare. Anyway, Chloe's well now, but things are still hard. I'm still trying to wean her onto our food, which she has no interest in at all, she's still on 4 month baby food. What I find most difficult is dealing with her itching and scratching. The constant greasing of her body, nappy rash, diarrheao, laundry washing etc wouldn't be such a chore if only she didn't itch as much as she does. She can't wear trousers/skirs and socks as she'll just sit on the floor pull the socks of and scratch, stopping her scratching makes her scream, cry etc so yes, things are heartbreaking but she is getting better. She can be distracted now and does play with toys. It is easier now, I'm sure many of you mums with older children will tell me. I just can't wait for her to be able to talk to me so I can help her and understand her more.
I thank God that she is here today and I will continue to pray for her healing. God bless you all, without asking him for the strength I have today I don't know how I would have coped.