[evansmom]

Hi there,

Sorry to hear about your little girl's lack of response to the ATG, four months out.

I've been in your shoes with my then ten year old son here in Canada three years ago. He too was a non-responder and we were given the choice of repeating the ATG treatment or going to transplant if a donor was available. For us, in a way, it was easy. We learned that we had a donor available about four weeks after we had the "the ATG treatment didn't work" meeting five months post ATG. Given that we had a well, though not perfect (9/10), matched donor, we agreed to transplant. We didn't see much point in repeating a treatment that didn't work in the first place. ATG is the appropriate first line treatment in a child (or adult) who does not have a good sibling match, however, it is a treatment used to 'reset' the immune system. Not every case of AA is auto-immune and I hope we get to the point where immunologists can quickly determine this at the time of AA diagnosis. If the AA is auto-immune in nature, then there's a good chance that the ATG and cyclosporin wil work. If, however, the AA is not auto-immune driven, then the medical team will know that doing the ATG will be a waste of precious time, and transplant options can be identified right away.

Look into transplant options now, kids tend to do very well and going in now rather than later has the advantage of fewer transfusions and thereby fewer antibodies circulating and less ferritin (iron overload from RBC transfusions)puting liver and heart at risk with the cytotoxic drugs that need to be used in transplant plus less risk of picking up a nasty, hard-to-get-rid-of fungal infection from time spent with a low neutrophil count. Fungal infections without neutrophils are difficult to treat, fungal infections in transplant without neutrophils or an immune system, are often deadly.

Evan's journal, start to finish of his AA/BMT journey is linked below.

Best wishes,