Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi Dawna You are right that only 10% of our kids have the UPD7 and I have also heard that those 10% tend to have a milder form of RSS. But I thought I would let you know that Adam tested negative for UPD7 and yet he does not have the gut issues either. In fact last night the kids and I went to an all-you-can-eat buffet. There were some other moms there from a group I belong to and I was saying to them that often children with Adam's syndrome tend to have issues with not wanting to eat and end up with feeding tubes. These two moms looked at Adam and said " obviously THAT part of the syndrome passed Adam by " . He had 7 thin slices of pizza, some pasta, fries, mashed potatoes, a dish of ice cream, a few bites of a cheese cake, Caesar salad, and a large coke (I think that was all he ate)!!! What a little piggy!! Debby Re: more information about lily. Hi Jayne, UPD7 is something that some (all?) genetisists use to diagnose RSS, BUT less than 10% of RSS kids are UPD7 and I have been told that just because a child is UPD7 doesn't definitely confirm RSS either. SO I think that they still have to look at all the physical characteristics too. I also think that I have been told that UPD7/RSS kids are generally milder in symptoms that other RSS have??!! Noah is UPD7 and is a milder RSS, well so far anyway he doesn't seem to have the " gut " issues and I'm praying that won't happen. Hope that helps a bit ... I am certainly not an expert ... I have only been on the list since Sept and of course am learning new things daily. But like someone said ask ask ask and SOMEONE will have some information for you. Sometimes I try to refrain from posting too much as I don't have all the information but I am confident that if I do make a booboo someone out there will correct it. This is quite the ride so hang on, we're all there with you! Dawna Matt 13, 11, 8 and Noah 3 RSS > > Hi I forgot to say that Lily is UPD7, is there a lot of difference in > UPD7 and RSS or are they both the same? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hey you guys Sorry I don't post much,but We just got out of the hospital and I am trying to catch up on everyones news. My son Grayson is UPD7 and RSS confirmed through Dr. H . and we have severe gut problems. Feeding tube and poor gut movement severe reflux, no appetite. So each child is diffrent. Dr. H told me that children with UPD & have milder outside features,but tend to have more internal problems. Amber mom to Austin 7 (non-RSS),Grayson RSS UPD7-28 months,20lbs.6 0z. GHT,Zantac,mirlax,MOM, and seizures. Deb wrote: Hi Dawna You are right that only 10% of our kids have the UPD7 and I have also heard that those 10% tend to have a milder form of RSS. But I thought I would let you know that Adam tested negative for UPD7 and yet he does not have the gut issues either. In fact last night the kids and I went to an all-you-can-eat buffet. There were some other moms there from a group I belong to and I was saying to them that often children with Adam's syndrome tend to have issues with not wanting to eat and end up with feeding tubes. These two moms looked at Adam and said " obviously THAT part of the syndrome passed Adam by " . He had 7 thin slices of pizza, some pasta, fries, mashed potatoes, a dish of ice cream, a few bites of a cheese cake, Caesar salad, and a large coke (I think that was all he ate)!!! What a little piggy!! Debby Re: more information about lily. Hi Jayne, UPD7 is something that some (all?) genetisists use to diagnose RSS, BUT less than 10% of RSS kids are UPD7 and I have been told that just because a child is UPD7 doesn't definitely confirm RSS either. SO I think that they still have to look at all the physical characteristics too. I also think that I have been told that UPD7/RSS kids are generally milder in symptoms that other RSS have??!! Noah is UPD7 and is a milder RSS, well so far anyway he doesn't seem to have the " gut " issues and I'm praying that won't happen. Hope that helps a bit ... I am certainly not an expert ... I have only been on the list since Sept and of course am learning new things daily. But like someone said ask ask ask and SOMEONE will have some information for you. Sometimes I try to refrain from posting too much as I don't have all the information but I am confident that if I do make a booboo someone out there will correct it. This is quite the ride so hang on, we're all there with you! Dawna Matt 13, 11, 8 and Noah 3 RSS > > Hi I forgot to say that Lily is UPD7, is there a lot of difference in > UPD7 and RSS or are they both the same? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Holy Crow DEB! I bet we all wish our kids ate like that! Man I think that is more than my non RSS 13 year old eats. Way to go Adam! They are all so different, there are no rules! Dawna > > > > Hi I forgot to say that Lily is UPD7, is there a lot of difference in > > UPD7 and RSS or are they both the same? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Thanks Amber ... See you do learn something new all the time! Well so far Noah doesn't " seem " to have the problems and I'm just praying that that doesn't change! I just hope we aren't missing anything. Dawna > > > > Hi I forgot to say that Lily is UPD7, is there a lot of difference in > > UPD7 and RSS or are they both the same? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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