Firstly I'd like to say
Happy New Year!!
Sorry we haven't updated in a while but things have been pretty busy, so over the next couple of days I will do some catch up posts, starting with this one.
Amy's Dermatology Appointment was on the 12th December and to be honest I was very nervous about going. We got ready to go, which itself was not much fun as Amy is still unable to wear underwear and wrapping up is pretty hard too as she can't tolerate wearing layers of clothes. So we bundled her up with blankets in the car to keep her warm and head off to the hospital.
We didn't have to wait long to be seen and we sat discussing Amy's skin history and all the various creams we had used. I explained to the doctor that we weren't happy with using Topical Steroid creams any more due her displaying a lot of side effects from them:
Red burnt looking skin.
Random bleeding from her legs - she didn't even have to touch them they would just start to bleed.
The thinning of her skin on her legs
The intense painful burning sensation she would experience every time we applied it
Her bedding being covered in blood every morning.
and the fact that the cream didn't seem to be helping just making it worse.
I explained to him how I had found out about and researched red skin syndrome, addiction to topical steroids and steroid induced eczema. I explained about ITSAN and reading so many stories about those suffering in similar ways to Amy. He told me that this was unfounded and set up by a group of steroid haters. He implied that I was making Amy suffer for no real reason and that her skin was this bad due to not applying the cream properly. He kept telling us that Amy needed to use steroid creams to make her better. He didn't want to acknowledge our concerns that these creams could be in fact making her worse, even after showing him pictures of what Amy's skin was like when we stopped using them and the improvement (though small) since we'd stopped, nor the fact that the side effects had stopped too.
We were given another option which was to use an immunosuppressent cream as an alternative to the Topical Steroids. I questioned this as I have heard that these creams can be quite dangerous and he then told me that there is a small risk of it causing SKIN CANCER.....why would I ever agree to using that on my daughter??? I very politely told him NO though at this point being polite was getting pretty hard.
The doctor continued to try and talk us into using the topical steroid cream, he said that Amy could have these lovely silk garments and light treatments BUT only if we agreed to using the topical steroid cream first.
We came out feeling very confused and upset. I didn't know if what I was doing was right, I felt like maybe I was making Amy suffer for no reason, all I want to do is make my little girl better. He gave us a prescription for a very potent topical steroid cream to use and to make another appointment after Christmas.
After we got home I ran through everything in my head. Amy was determined that we were not going to be using the cream on her, she reminded me how the steroid creams hadn't helped her and how far she'd already come...yep she is only 7 (nearly 8!) I thought back to all those side effects she had suffered because of those creams and how much her skin was improving without using them. Then I became cross!! How dare he not listen to us and to try to bribe us with these other treatments which Amy should be able to have without using the Topical Steroids.
Needless to say we have not used the creams prescribed by the dermatologist and nor will we be going back to see that doctor again.
I contacted my doctors surgery and made an appointment to see a GP after Christmas to discuss everything.