Summer Term 2012
Naomi started Losartan last week and is doing OK on the current dose. The hope is that it will slow down her heart ( aorta ) enlargement and possibly slow down some excess bone growth. It is being trialled internationally ( although Naomi was too young to be part of the trail at our hospital in Oxford). It is a widely used heart drug already with few side effects and lots of Marfan patients are currently using it.

We have been told by our spinal consultant that he wants to consider waiting another year to 18 months before Naomi's next and final operation... we see him in May to discuss it in more detail.