-----Original Message----- >From: Jocelyn <jknowd@xxxxxxxxxx> > >Do any other Trisomy 18 children on this list suffer from pulmonary >hypertension. Chris (mama to Mari, full T18, dob 8/24/01) I >remembered you mentioned it, and I looked on your link. What >medication, if any, is she on for PH. Jocelyn, Mari is not on any medication for her PH yet. (In fact she's only on a very small, superstitious dose of lasix & aldactone for her heart.) It doesn't seem to be an issue for her unless she is very ill. He doctor describes her PH as being secondary to her heart issues. Some of the smart people on the list can describe what this means better than I can....but I understand it to mean that her heart muscle is strong, but it is not efficient. The other issues about her heart is: she also doesn't have a lot of crossflow of blood (deoxygenated where oxygenated should be). Mari is not considered to be in congestive heart failure now, but that is a likely scenario later. I spoke at some length with a cardiologist at the Rochester conference. There are lots of PH meds in development now. It seemed to me the research for kids/infants happens last. > > >I will keep you informed how she is going. Those of you who pray keep >up the good work. Those of you who use power of positive thought keep >it up too. I am a great believer in BOTH. Will do Jocelyn! lovingly, Chris (mama to Mari, full T18, dob 8/24/01) Tipp City, OH 45371 http://pg.photos.yahoo.com/ph/misstippcity/my_photos http://home.earthlink.net/~loganfamily/id1.html http://www.benotafraid.net/story.asp?id=38 http://web.coehs.siu.edu/Grants/TRIS/ Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line