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Old 02-11-2013, 05:57 PM   #41
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I have had friends decline because they get tested for the gene themselves instead of testing baby. PKU is rare http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002150/
But the pku test involves over 30 endocrine, metobolic, hemoglobin and cystic fibrosis screenings. Not all are genetic.

It isnt just testing for pku any more (there may be states that dont include all the screenings but all states test for more than pku)

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Old 02-11-2013, 06:08 PM   #42
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Re: anyone decline the PKU?

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I have had friends decline because they get tested for the gene themselves instead of testing baby. PKU is rare http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002150/
So what if it's rare? does that help the family of a dead baby whose death could have been prevented?

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But the pku test involves over 30 endocrine, metobolic, hemoglobin and cystic fibrosis screenings. Not all are genetic.

It isnt just testing for pku any more (there may be states that dont include all the screenings but all states test for more than pku)
Not all states test for that much, it's worth checking into what your state tests for and asking for expanded testing if not and knowing what is NOT normal for a newborn is useful.

Rare also means not many docs know about the disorders, so if a baby shows signs often a doctor will miss it
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Old 02-11-2013, 06:09 PM   #43
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Re: anyone decline the PKU?

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But the pku test involves over 30 endocrine, metobolic, hemoglobin and cystic fibrosis screenings. Not all are genetic.

It isnt just testing for pku any more (there may be states that dont include all the screenings but all states test for more than pku)
Yes I am aware. At the hospital here the PKU is normally done seperate shortly after birth, and then another heel prick is done at the 1 week or 2 weeks (I forget exactly which one) for check up at the Peds office for a bunch of other things. So many of my friends have declined PKU testing if they themselves have been tested. I'm sure some of them declined the other heel prick as well, but I know most of them atleast did it without the PKU test.
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Old 02-11-2013, 06:12 PM   #44
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Re: anyone decline the PKU?

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So what if it's rare? does that help the family of a dead baby whose death could have been prevented?



Not all states test for that much, it's worth checking into what your state tests for and asking for expanded testing if not and knowing what is NOT normal for a newborn is useful.

Rare also means not many docs know about the disorders, so if a baby shows signs often a doctor will miss it
Um I was saying that the people I know who declined were tested to see if they carried the gene to pass on. If they didn't carry it then they didn't test for it since there wasn't a gene to pass to the baby. Since it's rare, they felt like it was better to just get tested instead of having baby tested.
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Old 02-11-2013, 06:14 PM   #45
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So what if it's rare? does that help the family of a dead baby whose death could have been prevented?

Not all states test for that much, it's worth checking into what your state tests for and asking for expanded testing if not and knowing what is NOT normal for a newborn is useful.

Rare also means not many docs know about the disorders, so if a baby shows signs often a doctor will miss it
In 2007 90 percent of all infants were screened for at least 29 disorders.

All states test for at least 29 conditons. Most test for 40-49 and a handful test for 50+
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Old 02-11-2013, 06:22 PM   #46
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Um I was saying that the people I know who declined were tested to see if they carried the gene to pass on. If they didn't carry it then they didn't test for it since there wasn't a gene to pass to the baby. Since it's rare, they felt like it was better to just get tested instead of having baby tested.
This doesnt make sense....

NOT all 29 of the tested for conditions on the ONE test are genetic. When the test is repeated at 2 weeks old the same 29 conditions are tested for. Just because a parent doesnt have a gene for a certain disease that is tested for does not mean their baby cant have the disease.

One that is screened for in all states is Congenital adrenal hyperplasia. It is not passed from parents and can make a child very sick. Its random. Without the newborn screen you would never know your child had it until it caused an issue that isnt reversible....

Pku is only ONE condition that is tested for on the pku test.

And BTW 90 to 99 percent of babies with one of the 29 conditions tested for is positive for the condition with the first screen done at 0-24 hours old. 99 percent of kids with pku are positive on their first screen.
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Old 02-11-2013, 06:37 PM   #47
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Re: anyone decline the PKU?

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Um I was saying that the people I know who declined were tested to see if they carried the gene to pass on. If they didn't carry it then they didn't test for it since there wasn't a gene to pass to the baby. Since it's rare, they felt like it was better to just get tested instead of having baby tested.
well given there are so many other similar conditions, if they did that vs the baby be tested that is just plain stupid. Bad advice they were given and I hope no one reads that advice and does the same.

This link has newborn screening success stories, there are also many stories that didn't have a happy ending.

http://www.fodsupport.org/newborn-stories.htm
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Old 02-11-2013, 06:57 PM   #48
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Re: anyone decline the PKU?

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This doesnt make sense....

NOT all 29 of the tested for conditions on the ONE test are genetic. When the test is repeated at 2 weeks old the same 29 conditions are tested for. Just because a parent doesnt have a gene for a certain disease that is tested for does not mean their baby cant have the disease.

One that is screened for in all states is Congenital adrenal hyperplasia. It is not passed from parents and can make a child very sick. Its random. Without the newborn screen you would never know your child had it until it caused an issue that isnt reversible....

Pku is only ONE condition that is tested for on the pku test.

And BTW 90 to 99 percent of babies with one of the 29 conditions tested for is positive for the condition with the first screen done at 0-24 hours old. 99 percent of kids with pku are positive on their first screen.
I pointed out in a previous post that at the hospital here they ONLY test for PKU within the first 48 hours, and then ANOTHER heel prick is done 1 or 2 weeks later in the Pediatricians office for the other screenings. You asked why someone would decline the PKU, this is why they declined it, because they were not carriers for PKU. You did not ask why people declined ALL the screenings, which they don't, they decline specifically PKU since they cannot pass it onto the baby.

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well given there are so many other similar conditions, if they did that vs the baby be tested that is just plain stupid. Bad advice they were given and I hope no one reads that advice and does the same.

This link has newborn screening success stories, there are also many stories that didn't have a happy ending.

http://www.fodsupport.org/newborn-stories.htm
They declined specifically the PKU test, because they are not carriers and cannot pass it onto their baby. There is another screening for the other disorders/illnesses/etc that is seperate to the PKU in the hospital that my friends deliver at. I am not talking about the combined test that most hospitals use, I'm specifically talking only PKU.

ETA: And also for some homebirth Midwives they do specifically PKU as well after the birth, and then parents take baby into the Pediatricians office for the other screening test. When I had ds2 at home I did PKU at home and then had to take him into the hospital lab for the other screening (which my Ped said could be done anywhere from 24 hours to 1 month after birth). However, the MW I'm using this time is able to do the entire thing at home a few days after birth.

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Old 02-11-2013, 07:46 PM   #49
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Re: anyone decline the PKU?

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I pointed out in a previous post that at the hospital here they ONLY test for PKU within the first 48 hours, and then ANOTHER heel prick is done 1 or 2 weeks later in the Pediatricians office for the other screenings. You asked why someone would decline the PKU, this is why they declined it, because they were not carriers for PKU. You did not ask why people declined ALL the screenings, which they don't, they decline specifically PKU since they cannot pass it onto the baby.



They declined specifically the PKU test, because they are not carriers and cannot pass it onto their baby. There is another screening for the other disorders/illnesses/etc that is seperate to the PKU in the hospital that my friends deliver at. I am not talking about the combined test that most hospitals use, I'm specifically talking only PKU.

ETA: And also for some homebirth Midwives they do specifically PKU as well after the birth, and then parents take baby into the Pediatricians office for the other screening test. When I had ds2 at home I did PKU at home and then had to take him into the hospital lab for the other screening (which my Ped said could be done anywhere from 24 hours to 1 month after birth). However, the MW I'm using this time is able to do the entire thing at home a few days after birth.

What state?
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Old 02-11-2013, 07:49 PM   #50
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Re: anyone decline the PKU?

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What state?
It's not state wide, it's only the local hospital that does it this way (that I'm aware of). The hospital in the bigger city an hour from here does it all on day 2 with one heel prick, and then another hospital about 45 minutes from here does it all on the same day too but 2 different pricks. It varies.
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