Guest guest Posted May 16, 1998 Report Share Posted May 16, 1998 Ken, I love your comment about none of us knowing-an accident could happen at any moment. Per who would think a 4 yr old would attempt suicide? Delight in every good and wonderful moment with the ones you love and give to them all the very best you can. S. Prognosis and antacids >From: mitodad@... > >Just a couple of quick <g> responses: to pass. So Kate, don't worry too much about what you were told about Complex II. A lot can happen, and in reality, none of us have a prognosis - mito or not. An accident can happen at any moment! > >------------ > >Ken > > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1998 Report Share Posted May 16, 1998 Ken, I love your comment about none of us knowing-an accident could happen at any moment. Per who would think a 4 yr old would attempt suicide? Delight in every good and wonderful moment with the ones you love and give to them all the very best you can. S. Prognosis and antacids >From: mitodad@... > >Just a couple of quick <g> responses: to pass. So Kate, don't worry too much about what you were told about Complex II. A lot can happen, and in reality, none of us have a prognosis - mito or not. An accident can happen at any moment! > >------------ > >Ken > > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! >http://www.onelist.com >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Just a couple of quick <g> responses: As for Antacids, Zantac is used frequently for people with reflux. Tends to work well for a lot of people, but then when unsuccessful, next step is what is referred to as an acid-pump inhibitor (Prilosec is one - that commercial you may have seen where they ask about how frequently you get heartburn). These newest drugs essentially turn off acid production at the final stage. Only problem is that your stomach has some " feedback sensors " meaning that if it can't sense that acid is present with food in the stomach, the stomach makes more acid (just never gets to the final step). The end result for people taking Prilosec is that when you stop in, the stomach is actually making too much acid so that there is a sudden surge (sheer *( & ^ for about a week until the stomach begins making the normal amount of acid. --------------- Prognosis with Complex II or any other type of mito disease: As some of the old-timers on the list are aware, having done pediatric hematology/oncology for about 7 out of 12 years, I have seen a lot. NO DOCTOR can predict what will happen with any one patient, nor how long they will live. You have to take a prognosis with a HUGE grain of salt. I've " been there, done that " both from a doctor's perspective as well as a parent's perspective. Though we think our training has made us " smart " , things are never in our control. I've had many a discussion with parents with regards to trying to save their child's life using all of today's technology, versus letting their child die in peace. Ultimately, several children did pass away, just happened to be a year after we thought that they would. My own son is a good example of that, too (as are many on this list). That's one of the reasons I put my site up - to give hope to those who think that the end is near. Several of us have children about the same age, were told that our kids wouldn't make it to their first birthday, and yet Rhys will be 7 in about 3 weeks (Have a Happy B'Day Angus!). We tend to make prognoses based on our knowledge base. Problem is that the mito world is changeing too quickly at the " bench " level, and nothing is happening at the " clinical " level. There are many docs who still feel that mito is strictly a maternal thing (not the case in about 95% of patients). And as many of my peers trained when Leighs was becoming more recognizable and everyone usually died within the first couple of years from the time of diagnosis, that's what tends to stick in our minds. Though we think that by giving what we honestly believe is the appropriate prognosis,rarely does it come to pass. So Kate, don't worry too much about what you were told about Complex II. A lot can happen, and in reality, none of us have a prognosis - mito or not. An accident can happen at any moment! ------------ Ken Quote Link to comment Share on other sites More sharing options...
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