We had our second appointment at the IBD clinic at the Children's Hospital yesterday. To be frank, it was not good news.
Basically Sara's blood results show the inflammation markers getting higher and higher which means that the Imuran and not eating food is not doing any good at all. In fact if anything the situation is getting more and more acute.
So what's the plan? I'm not really sure.
Here's what I understood from the specialists.
- Sara is to continue on her "no food" regime for another 2 weeks, in the hope we'll see some improvement.
- She is to continue on her imuran
- She has been given a strong anti nausea medication and a tablet to control her reflux
- At our next meeting we may try a new drug called infliximab which is given by infusion. Sara will need to be admitted into hospital and this infusion will be conducted under strict monitoring
- We have been given a referral to a pain specialist to help her manage her pain better
Meanwhile Sara is off to a school camp next week. I'm extremely anxious about her going but I'm hopeful that the distraction will make the week go very quickly. The school have been incredibly understanding and they will allow her whatever rest and consideration she needs. Not sure how she will go with all the midnight feasts and after hour parties that no doubt will take place. Fingers crossed it all goes well.
I don't know if I told you that I've given up coffee in support of Sara having to give up food. It's right about now I could use a large skim cap (no sugar), so if you're reading this, have one for me. PLEASE!
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