OUR HOSPITAL APPOINTMENT

We had Oscar's specialist appointment two days ago. It went much as I expected. We discussed immunosuppressants like we had previously talked about last Xmas then the specialist took a five second look at Oscar's back and tummy and commented his skin is a "Right wee mess". I replied that today is a good day for him. As he was assessing Oscar's skin Andrew asked if he had heard of Red Skin Syndrome. "Yes I have and Oscar does not have that, in fact many people don't believe in it and there are lots of horrible things about it on the Internet". End of conversation!!
This leaves me with many questions. How does he know Oscar doesn't have it? Does he believe in it or not? If not then what does he make of all the blogs and information about it on the Internet? We dropped this discussion promptly, partially because I felt we had been put in our place in that we know nothing about it and that it was pointless to continue challenging him as it would have ended up in a very heated discussion. Honestly, we don't know enough about it ourselves to be able to challenge a dermatologist on it. What we do know is that Oscar has every single symptom of Red Skin Syndrome. Oscar's skin presented with splotchy and spotty patches at the hospital and 24 hours later he is beginning to look red and inflamed and very, very dry after five days of not using topical steroids. It truely is a vicious cycle. I left the hospital with self doubt about everything, wondering if we are making the right decision going ahead with the immunosuppressants and cessation of topical steroids.

After our appointment Oscar had to have another blood test much to his disgust. He did tell me later in the day that it didn't actually hurt him! Once the blood test results come back the script will be sent to us so we can begin the next step of this crazy journey.

Oscar only had a few hours sleep last night(and me!) so he had a home day. I told him he would need to still do some reading, writing and maths. Well before 9 a.m he was sitting up at the table ready to
write...I was ready to go back to bed! However this is not an option having to care for our three crazy boys so the next best option was to make a coffee.
We are back on another stint of steroid creams and will continue to do this until the drugs kick in. Yes we are delaying the inevitable but we are hoping by doing it this way he won't be suffering earlier than needed. To be honest we have no idea what we are in for and what to expect. I wish I did know so I could mentally prepare myself. Whatever happens, we will get through it as a family and we will remain brave and positive for our wee man.