Quote:
Originally Posted by curlygirl
Thank you, Neil! My doctors have decided that it is Aplatic Anemia and have recommended Cyclosporine and ATG. My son also tested slightly positive on a PNH test. The doctors were ready to start but then my son's numbers jumped into the 700s, so we put a hold on it thinking it may increase (as opposed to decrease). It was so sad when we went back in and found out he went from 780 into the 300s in three short days. My son was so excited that everyone else was excited (even the doctors) that he was getting better. Except for the first night in the hospital it was the only time he started to cry. He did seem under the weather again in the days prior to his ANC collapse and had the dark circles under his eyes again.
We did go to Hopkins where we got my older son tested to see if he was a match for a BMT (our hospital does not perform BMTs). When he wasn't, Hopkins talked about their High-dose Cyclophosphamide treatment. After looking into it my husband and I decided that we'd rather stick with the Cyclosporine/ATG treatment. Also, my son really likes his doctors and nurses currently.
Thank you for the response! It is great to have input and it makes me calmer to have people to trade ideas with. Please take care.
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Their comfort with their medical staff is extremely important. My daughter was diagnosed with SAA March this year and had BMT April as her brother my 3 year old son was great match.
I have asked doctors and nurses not to mention ideas of getting better or going home or similar around 8 year old as they take everything on and get sad when it doesn't happen. They feel personally responsible for getting sick again or not getting better. They feel like it's their fault everyone is sad and stressed and if only they could do it right, they can get better and it will all go away. Which it won't of course.
We say 'when' or 'we hope' or 'let's just do what we need to do and just think about that'.
Lots of things about treatment are different in Australia, like there is only 1 hospital to get treatment in the whole of north east Australia! but taking care of a child is the same everywhere. They have to be helped to feel it's not their fault and no one is put out by them or they can't wish for things to change. They just need to focus on drinking their water, taking their meds, eating without being too fussy, telling the truth about how they feel, resting when they're tired and keeping busy when they feel well...those are things they can control.