Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Hi Everyone, I was wondering if anybody has any experience with inhaled Ilomedin (perhaps also called Iloprost)? My daughter's cardiologist has suggested that we give this to our daughter as a replacement for continuous oxygen. Our daughter is 5 years of age and has Down Syndrome and pulmonary hypertension. We would dearly love to wean her from the oxygen at least by day as it is so cumbersome and is really effecting her ability to take part in any activities including going to kindergarden. She is unable to walk and the tubing is continuously wrapped around something or other which causes major frustration for her. Her cardiologist has suggested that it might be possible for our daughter to inhale this drug a number of times a day instead of using O2 but she is not sure at all that it will work. We are willing to give it a shot but I am so concerned that she might end up depending on both the drug and the O2. Does anybody know from experience if it is easy to stop taking without major side effects? How long does the effect of the inhaled drug generally last before one has to inhale again? I would be very grateful for any information regarding this drug. Thanks, Tricia Quote Link to comment Share on other sites More sharing options...
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