Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 I agree with Angel. We all know how wonderful our kids are, so why grasp every straw that is potentially 'normalizing'? Because we want them to do the best they possibly can. We just have to be careful in discerning between the things we can and cannot control in that process. I suppose if a karyotype was done, say, every five years, throughout the life span of a large group of infants diagnosed with mosaicism, one could eventually determine the validity of the belief that the percentage of normal cell lines increases over time. Next, we could predict how old our kids would be when all their cells become normal...175? 350? Judie, mom to Christi, 29 , and lots more ************** Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Hi Angel I am not sure which post you are refering to, but most definitely you do NOT outgrow MDS! Once those affected cells are in the body they are always there! However, in some cases, our researchers have found that the unaffected cells reproduce at a faster rate than the affected cells and so the percentages can change. This is the reason why a lot of individual's physical characteristics fade away over time. But, even though the affected cells reproduce at a faster rate than the affected cells this does not make the MDS go away and it does not change the outcome of the delays. This is because the skin cells (considered to be equivalant to brain cells) do not change. I hope this helps Kristy LDSAngel77@... wrote: I've read a handful of posts about this " tendency towards normal cell growth " , and I haven't heard anyone else respond to it yet, or maybe I missed it.... but, I just feel I need to say that this kinda of rubs me the wrong way. I've heard the theory before, but just as that, a theory. If there's hard core evidence, I'd really like to be directed to it. I just get concerned, that new parents, who are struggling with their child's diagnosis, come and hear repeatedly that their child will grow out of it, and I don't think that's a fair thing to tell a parent. Maybe we could ask the families who have OLDER children if they see any evidence of their child " outgrowing " their MDS? My son is 15 now.... no evidence of him being " less " Down's at this point. Actually, his features became a little more prominent as he's gotten older. As an infant, the doctors didn't even see it! He grows, and he learns, but, his delays are still there. I think it's kind of.... " dangerous territory " , for lack of a better term, to keep throwing that idea out. What's wrong with just accepting the diagnosis, and making the best of it? Do we have to hope it goes away? ::::shrug:::: Angel **************Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 hello all of you, Reading Kristy now I have a question, it´s really that the results of a skin cell´s karyotipe is equivalant to the possible damage or delays in the brain? My baby has only 6 month and I expect his percentage will grow down. Thanks and sorry about my english. Santi, Alessandro´s father > I've read a handful of posts about this " tendency towards normal cell > growth " , and I haven't heard anyone else respond to it yet, or maybe I missed > it.... but, I just feel I need to say that this kinda of rubs me the wrong way. > > I've heard the theory before, but just as that, a theory. If there's hard > core evidence, I'd really like to be directed to it. > > I just get concerned, that new parents, who are struggling with their > child's diagnosis, come and hear repeatedly that their child will grow out of it, > and I don't think that's a fair thing to tell a parent. Maybe we could ask > the families who have OLDER children if they see any evidence of their child > " outgrowing " their MDS? > > My son is 15 now.... no evidence of him being " less " Down's at this point. > Actually, his features became a little more prominent as he's gotten older. > As an infant, the doctors didn't even see it! He grows, and he learns, but, > his delays are still there. > > I think it's kind of.... " dangerous territory " , for lack of a better term, > to keep throwing that idea out. What's wrong with just accepting the > diagnosis, and making the best of it? Do we have to hope it goes away? > > ::::shrug:::: > Angel > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 Hi Santi Your English is very good! It is the percentage of skin cells that we think affect the brain. Our researchers are not positive about this, but it is the idea that the skin cells are the same as the brain cells. I hope you can understand that with my English. If you need more explanation, please ask Linette to explain to you. Welcome to our group! Kristy santiagocerezo wrote: hello all of you, Reading Kristy now I have a question, it´s really that the results of a skin cell´s karyotipe is equivalant to the possible damage or delays in the brain? My baby has only 6 month and I expect his percentage will grow down. Thanks and sorry about my english. Santi, Alessandro´s father > I've read a handful of posts about this " tendency towards normal cell > growth " , and I haven't heard anyone else respond to it yet, or maybe I missed > it.... but, I just feel I need to say that this kinda of rubs me the wrong way. > > I've heard the theory before, but just as that, a theory. If there's hard > core evidence, I'd really like to be directed to it. > > I just get concerned, that new parents, who are struggling with their > child's diagnosis, come and hear repeatedly that their child will grow out of it, > and I don't think that's a fair thing to tell a parent. Maybe we could ask > the families who have OLDER children if they see any evidence of their child > " outgrowing " their MDS? > > My son is 15 now.... no evidence of him being " less " Down's at this point. > Actually, his features became a little more prominent as he's gotten older. > As an infant, the doctors didn't even see it! He grows, and he learns, but, > his delays are still there. > > I think it's kind of.... " dangerous territory " , for lack of a better term, > to keep throwing that idea out. What's wrong with just accepting the > diagnosis, and making the best of it? Do we have to hope it goes away? > > ::::shrug:::: > Angel > > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001) > > Quote Link to comment Share on other sites More sharing options...
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