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Old 03-05-2008, 10:10 AM   #1
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infantile pckd

i am just trying to get some info on infantile pckd as my unborn baby has been diagnosed with it and i have been told that the outcome will be that my baby will die can anyone give me any info on success stories were babaies have survived.

 
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Old 03-06-2008, 09:26 AM   #2
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Re: infantile pckd

is this actually PKD and not pckd?just wondering since i have never heard of pckd,but i have PKD.polycystic kidney disease?did they say anything about this being a resessive disease?just need to find out if we are actually talking about the same thing here or what exactly pckd actually stands for.it would really help to know.Marcia

 
Old 03-07-2008, 01:48 AM   #3
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Re: infantile pckd

yeah sorry for some reason the docs said it was pckd but it is pkd and its is the recessive one .

 
Old 03-07-2008, 08:28 AM   #4
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Re: infantile pckd

i have to ask if you have really researched this at all?if you have,you know that having the recessive form in an unborn,well,the odds are not good hon.i hate to tell you that.just how enlarged are the kidneys?there is the autosomal dominant type and the recessive type.kind of the same but also very different in just how they actually present and what takes place when this is found in an unborn child.just what have your doctors told you about the baby so far,any new therepies or anything availiable?i really am sorry this was found in your child.as you are already doing here,you really need to do your research on this.there is ALOT of info out there on it.i was kind of hoping that they had come upwith something new to try and be able to treat this some way in newborns.i researched both types back in 99 very heavily when my son(he was then 12 and had just presented with liver failure) was Dxed with the autosomal dominant type then so was i.i know the info i did see on the recessive was very sad and very dissappointing.it sounds from what you were told that not alot has actually chaneged in this area,for that,i truely am so very sorry.have the docs given you ANY real hope at all for a different outcome,any?marcia

Last edited by feelbad; 03-07-2008 at 08:44 AM.

 
Old 03-08-2008, 07:57 AM   #5
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Re: infantile pckd

it is the recessive type and the kidneys are 3 times the size they should be for a baby and they dont work at all so i aint got no amniontic fluid either. iv researched it and i agree the outcome doesent look good but iv still got hope. the docs said that if the babys lungs are ok which is unlikely due to there being no amniotic fliud then they could try dialisis but its unlikley to work as it doesent very often in babys im just tryin to find out any cases were the baby has survived i havent found any so far which is a shame. the docs dont have much hope for this baby and they dont really want to help aas they say its not cost effective when the odds are so slim but iv got hope for this child and im gonna fight all the way and get all the care needed for this child if then it dont survive then at least iv tried my best.

 
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