Frustrated

Saturday night Zoe started breathing loudly. Again no fever (as it is now impossible for her to get them), no complaints, she had been grumpy and tired.... but she is 2 years old and that is not unheard of.  (Lets go back to the beginning).....

When Zoe was diagnosed we had worked out her pattern; every 5 to 6 weeks she would get very tired, stop eating, have flu like symptoms with cough and runny nose, cry and cuddle a lot more. She would move around less and then between 3 and 5 pm she would get a fever daily which would last around 8 days. Her fever would spike 3 or 4 times in a 12 hour period, reaching between 39° and 42°. This of course would be accompanied by extreme pain all over her body. This pattern continued during her first treatment (Kineret) of daily injections. The specialist realized that her illness was stronger than the medicine so they put her on a medicine that she really was not meant to be given because the studies on the drug was not trialled on children anywhere near her age. We didn't get much of a choice, we just had to trust in what the doctors suggested. They told us her immune system would be affected greatly and that the drug would stop her body from having a fever even when she was sick.   

So she started on Actemra and although she has had pain on and off the pattern had broken. We started thinking that the medicine was doing everything that Kineret couldn't do.  6 and a half weeks ago (10 months in to her new treatment) she got her first flare (without the fever). She was tired, grumpy, stopped eating, was complaining of pain in her body, stomach and eyes and started coughing which ended up as a chest infection. Now Almost 7 weeks later she is tired and grumpy, gone off her food and has started coughing again... is it a coincidence or is the disease getting stronger than her medicine again.

I have questions and I get no answers and then the intern who saw us today had absolutely no interest  in listening to what I had to say and I got really pissed off with everything. I wanted to stop Zoe's treatment and never go back to the hospital. Her immune system is so low that she keeps getting sick and I am over it all. I want some assurance that giving this treatment is not harming her more than helping her and that it is doing something good... because right now I am not so sure. I feel sad and annoyed.