Monday, 10 March 2014
The Isle of Wight
Josh loves geography. He loves learning about other countries and cultures and one day he wants to visit another country. With his health complaints we are apprehensive to say the least - but the Isle of Wight is a little of a compromise!
One of Josh's favourite food is Yoyos. He loves them, they are purely fruit, but they feel like a treat to him and they come with collector cards. Today he got the card MALAYSIA:
As for us parents, we have been lacking sleep. He needs constant attention during the night to prevent him for scratching (he scratches while asleep) - so we have to gently coax his hands away from his face so as not to wake him. We do this 10 - 20 times a night and it is tiring. Sometimes we miss nights and this is what greets us in the morning:
My heart breaks little bit by little bit every day. I just want him to feel better. That's all. Please make him better.
The good news is that we have found some medical papers concerning Topical Steroid Addiction written by a dermatologist in the UK. Its a great find, because hopefully we can talk this through with Josh's dermatologist and get some treatment that does not involve steroids. Josh has seen many dermatologists and a lot of the time they are just not interested in hearing what has been happening. Especially if it involves the words 'it doesn't work' or 'we'd like to try something else'. They just send us away with stronger steroid creams and we go back to the vicious cycle. We put it on, his skin clears up. A week later we go back to the doctor and they are happy and tell us to keep putting it on. We keep putting it on and very gradually it stops working and his skin is worse then when we started - we go back to the doctors say that its not working and more steroid cream is prescribed. Its a never ending cycle.
His skin looks as though its healing up a bit :-