Do you do the PKU test? - Mothering Forums

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#1 of 63 Old 01-03-2010, 09:48 AM - Thread Starter
 
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Just curious!

I haven't had a UC yet, but I've had two midwife-assisted homebirths. We may be UCing this time. We did the PKU test with our first two, but are wondering if it's necessary and are thinking of opting out. I know it's mandated, are there any penalties for not doing it?

Thanks!

ETA: Found the code for my state on this and I have the right to refuse. http://codes.ohio.gov/orc/3701.501 So, that takes care of that.

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#2 of 63 Old 01-03-2010, 07:24 PM
 
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We do it... it is available as a completely non-evasive test here in Quebec (not the heel prick)

We just take a urine sample on a small piece of absorbent paper at 21 days old and send that in... because the baby has also had time to metabolize breastmilk it is also more accurate than the tests taken right after birth...
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#3 of 63 Old 01-03-2010, 08:11 PM
 
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We didn't do it. The doctor 'strongly advised' it but we had done our research and decided together that we didn't want to prick his heel like that. He had never been so much as touched by someone who didn't love him for 2 weeks... until that doctor's visit. I wasn't about to subject him to something like that....

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#4 of 63 Old 01-03-2010, 08:17 PM
 
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I am going to have a Newborn Screening Test Refusal form on-hand at my birth. Almost every state stores the DNA information from the PKU test in a database that is used for scientific research. I am against the state withholding private information such as this without parent approval. Plus its just creepy... Who knows what they might use it for.

There are nongovernmental and non-big pharma groups that do the genetic testing without invasive (heel stick) or illegal means (retaining DNA info). They usually work under homeopathic medicine.
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#5 of 63 Old 01-03-2010, 08:34 PM
 
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There are nongovernmental and non-big pharma groups that do the genetic testing without invasive (heel stick) or illegal means (retaining DNA info). They usually work under homeopathic medicine.
That's really interesting. I'm considering UC, but was pretty sure I wanted the genetic testing done because of how serious some of the diseases it tests for are. How can I find out more about these alternative testing groups/methods?

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#6 of 63 Old 01-03-2010, 08:40 PM
 
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I found out about the alternative methods in a baby expo in my local town. When talking to some of the women who practiced homeopathic medicine she told me they provide such services. I would search for homeopathic practitioners in your area or ask an acupuncturist if they can direct you. Sometimes they work together.
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#7 of 63 Old 01-03-2010, 09:24 PM
 
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I understand not wanting to cause an infant pain, but I'm curious how folks weigh that momentary hurt vs. refusing a test that will reveal whether the baby has a condition that, untreated, leads to profound mental retardation? I'm really interested in hearing what goes into a decision like this.

In my state (and I suspect in most) what's called the "PKU test" is actually a screening for 34 other conditions, so that those same few drops of blood can also show whether a baby has galactosemia, biotinidase deficiency or homocystinuria (to take just a few examples which also lead to profound mental retardation).

Are folks opting out of the screening for those, or is there something about the PKU in particular that you find disturbing?
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#8 of 63 Old 01-03-2010, 10:16 PM
 
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Almost every state stores the DNA information from the PKU test in a database that is used for scientific research.


Really? Do you have a credible link to back that up? What kind of research are they doing?



I did not vaccinate my children, and they were both born at home, but I opted to get the metabolic screening because the tiny amount of pain caused by a heel prick is absolutely immeasurable compared to the pain that an undiagnosed metabolic condition could cause. My classmate's nephew has PKU that was untreated for a number of years, and he has severe damage as a result.

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#9 of 63 Old 01-03-2010, 10:26 PM
 
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The problem with the PKU test is that they are done routinely in the first days after birth, often before mom's milk comes in which gives a lot of false results. So doing the tests in the first few days does not guarantee that things will be caught...

The urine test that we do is not only non-invasive but a lot more accurate, which is the most important part IMO... I wish it was available as an option in other places also...

 
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#10 of 63 Old 01-03-2010, 10:29 PM
 
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Originally Posted by zinemama View Post
I understand not wanting to cause an infant pain, but I'm curious how folks weigh that momentary hurt vs. refusing a test that will reveal whether the baby has a condition that, untreated, leads to profound mental retardation? I'm really interested in hearing what goes into a decision like this.

In my state (and I suspect in most) what's called the "PKU test" is actually a screening for 34 other conditions, so that those same few drops of blood can also show whether a baby has galactosemia, biotinidase deficiency or homocystinuria (to take just a few examples which also lead to profound mental retardation).

Are folks opting out of the screening for those, or is there something about the PKU in particular that you find disturbing?
I weigh in on the side of testing. If there was a way to get all that information with no pain/harm to the infant, I would definitely go for it, but unless I can find another equally comprehensive test, I know of no true risks to this test. I'd want to know if my baby had a serious, but hard to detect, metabolic disorder, so I could have him/her treated appropriately.

I'm a little disturbed by what inertia wrote about states keeping DNA information on every baby. I'd also be interested in knowing more about this aspect of the heal prick test.

The urine test sounds like a really good idea.

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#11 of 63 Old 01-03-2010, 11:36 PM
 
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It's required by law here and for my hospital birth we left early beforethey could do it and we didn't go the very next day to get it done and got a call threatening CPA involvement. Wasn't worth the hassle to me when my friend actually has a daughter with PKU and seeing how normal and healthy she is because it was detected early and they just have strict diet Vs all the other kids they have met with PKU at the center with severe retardation makes me pro testing.

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#12 of 63 Old 01-03-2010, 11:46 PM
 
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With all my boys we have opted to do addl private newborn sceening because the states that we have been in have had a limited screening panel. there are several private for fee places that will do a "expanded newborn screening" the one we use was pretty up front with what info they collected and their privacy policies.

I do know that when we were in the hospital they had a optional info card that was sent in with the blood drops that was a sort of detachable card. It asked a few questions like race/geographic region and some other non identifiable information. I wonder if that is what another poster meant by the info is used for sceintific research. AS the card I saw did say the information is used for statistics and research into metabolic disorders however NO identifiable info other what was selected on teh card would be used.
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#13 of 63 Old 01-04-2010, 12:10 AM
 
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We will be doing a PKU test and sending it to a private lab in Maine that screens for all 60 types of metabolic disorders, we will also be doing this 48 hours after my milk comes in.

I would also like to hear more about the DNA database kept...??? (I have a friend who is a forensic scientist for the state of Maryland and says she wishes there was such a database to make the solving of crimes a bit easier.... not that I agree... but that makes me think that there ISN't such a database???)
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#14 of 63 Old 01-04-2010, 12:24 AM
 
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Here are just some I've found, but I've heard some pretty far-out stuff about what they could do with the DNA information.... on the subject of DNA-specific biological warfare. I don't put much faith in that reality, but its still enough to keep me from getting a test through the state. I enjoy the freedom of privacy, thank-you

"Brase said most states do not require parental consent for newborn genetic testing or for the government to keep the genetic results. Most states now keep DNA results for a period of time – some indefinitely. "
From
http://www.wnd.com/index.php?fa=PAGE.view&pageId=117926

"Under current law, the department can still use the blood samples for quality control and disease research as long as parents don't object. The department screens about 800,000 newborn blood specimens each year."
From
http://www.google.com/hostednews/ap/...UCutQD9COJR7O0

"Discovery of new genetic markers means that having someone’s DNA can lead to inferences being made about that person’s future health, behavior, and possibly family relationships. Another fear is that the blood spots, if left in state governments’ hands, will be shared with national and international government agencies, thereby vastly expanding the potential for access to an individual’s DNA."
From
http://privacylaw.proskauer.com/2009...-newborns-dna/
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#15 of 63 Old 01-04-2010, 10:17 AM - Thread Starter
 
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Thank you for all the info, guys. I will look into the private non-invasive testing, I have no problem with that. I like my privacy, too, and was a weeping mess during the last two heel-pricks, so I think we'll opt out.

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#16 of 63 Old 01-04-2010, 10:49 AM
 
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It's required by law here, but no one ever asked me for the results, so we never did it.

For our next one we'll be in another state which requires the results to file for a birth certificate. I'm thinking of getting the waiver.

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#17 of 63 Old 01-04-2010, 12:40 PM
 
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Originally Posted by zinemama View Post
I understand not wanting to cause an infant pain, but I'm curious how folks weigh that momentary hurt vs. refusing a test that will reveal whether the baby has a condition that, untreated, leads to profound mental retardation? I'm really interested in hearing what goes into a decision like this.

In my state (and I suspect in most) what's called the "PKU test" is actually a screening for 34 other conditions, so that those same few drops of blood can also show whether a baby has galactosemia, biotinidase deficiency or homocystinuria (to take just a few examples which also lead to profound mental retardation).

Are folks opting out of the screening for those, or is there something about the PKU in particular that you find disturbing?
We didn't do any screening.

#1, our daughter was screened and didn't have any of them. From what I have read, if one baby doesn't, the likelihood of future children having them are EXTREMELY low

#2, the chances of a baby having any one of those diseases is incredibly low in the first place.

#3, the tests are done too early in general, and in my opinion, not worth our time. Hubby and I looked up all of the conditions that are tested for and the chances are SO low, that combined with our daughter testing negative on all of them, we decided not to do it.


Of course, most people would feel that a UC is 'taking unnecessary chances wirth baby's health' too...

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#18 of 63 Old 01-04-2010, 01:32 PM
 
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I have been going back and forth with this one for a few years. At the moment, all I can say is that we will decide come the day. It is the heel prick test here - wish they did the urine one (as we do EC - not a problem! lmao). I think ill do everything I can on the day (baby nursing comfortably at breast, heel nice and warm with warm cloth, etc) to see how it goes but if my baby is distressed by it at any point, we stop. I remember getting DS done and it was-not-nice-for-either-of-us.
If we choose not to do it - I have looked at the risks and feel comfortable.
Currently, they only test for 4 things here in the UK (at a week or two post birth I think). (I know in the USA - they test for like a million things or something lol - But they really only test for 4 here and the fourth thing is rather recent too...they only tested for 3 things when I had my son)

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#19 of 63 Old 01-04-2010, 04:08 PM
 
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Here's something I found ironic with DS1.
They gave him a Vit. K shot (without my consent) and then had a heck of a time getting the heel-prick done. It took more than 4 tries and he was obviously distressed. His blood clotted extremely easily.
Perhaps if he wasn't given the unnecessary Vit. K shot....

Anyway, we had DS2 tested as well (it went MUCH smoother), my midwife convinced me that it is a very simple test that could make a huge difference in his life. Here they test for 25 things.
Thank you for suggesting the urine test, so far from what I've been looking up it's only given after 6wks of age. I will research this further because I am much more partial to a urine test.

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#20 of 63 Old 01-04-2010, 04:18 PM
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I took my son in for the newborn screen a week after my UC, and will definitely get it done again when my new baby is born. It is just too important to skip, IMO. Could you live with yourself if your baby had one of these conditions, that diagnosed could lead a normal life, and undiagnosed would lead to severe problems or even death, and you'd chosen not to do it to avoid a half-second poke and conspiracy theory fears of the DNA being stored? It's a little blood. The poke is not that bad (I've done the test on newborns who didn't cry at all, most only get irritated near the end when they are tired of you holding their foot) and it doesn't have to be done immediately (wait a week, or even a month-- almost none of the 40+ diseases screened for would cause damage before then).
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#21 of 63 Old 01-04-2010, 04:25 PM
 
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Anyway, we had DS2 tested as well (it went MUCH smoother), my midwife convinced me that it is a very simple test that could make a huge difference in his life. Here they test for 25 things.
Thank you for suggesting the urine test, so far from what I've been looking up it's only given after 6wks of age. I will research this further because I am much more partial to a urine test.
I don't know how it works in other places but here the Urine test is a govn't run test and they ask for it to be done at exactly 21 days... we do it at home and then send it in...

Quote:
3- Urine sample screening test

* a few health services have adopted the urinary screening that is done around the 3rd week of life from a filter paper containing a urine spot taken from a damp diaper. The dried filter paper is mailed to the screening centre by the parents.
* this urinary screening test was initiated in the Province of Quebec in the early seventies; it is one of the few programs that exist in the world. It allows the early detection of organic acid disorders, or other disorders which could have been missed by the blood tests done during the first week of life if the protein intake was insufficient to reveal a metabolic block. http://atlasgeneticsoncology.org/Edu...ID30056ES.html
I know two people that did the test at birth and then did the urine test and in both cases it was missed with the heel prick and caught with the Urine test... one was PKU and the other was another metabolic disease.

I do think that the screening is important but I don't think that the heel prick is the best way to do it. Not only is it unnecessarily invasive, but it is not done at the right moment to get the best results.

 
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#22 of 63 Old 01-04-2010, 04:56 PM
 
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I took my son in for the newborn screen a week after my UC, and will definitely get it done again when my new baby is born. It is just too important to skip, IMO. Could you live with yourself if your baby had one of these conditions, that diagnosed could lead a normal life, and undiagnosed would lead to severe problems or even death, and you'd chosen not to do it to avoid a half-second poke and conspiracy theory fears of the DNA being stored? It's a little blood. The poke is not that bad (I've done the test on newborns who didn't cry at all, most only get irritated near the end when they are tired of you holding their foot) and it doesn't have to be done immediately (wait a week, or even a month-- almost none of the 40+ diseases screened for would cause damage before then).


I took my 9-day-old to the dr after we had UCed. She did a newborn exam and they did the PKU. The benefits very much outweigh the risk/discomfort.

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#23 of 63 Old 01-04-2010, 06:11 PM
 
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Currently, they only test for 4 things here in the UK (at a week or two post birth I think). (I know in the USA - they test for like a million things or something lol - But they really only test for 4 here and the fourth thing is rather recent too...they only tested for 3 things when I had my son)
They currently screen for a minimum of five diseases. See here for the NHS site for more info.

Some HAs screen for more, I know mine screens for far more.

The risk of some conditions is low but they also test for cystic fibrosis which is a 1 in 2,500 risk in the UK and early diagnosis and treatment improves long term health.

So, personally I would (and did) get the test. It was done by the midwife, with her in my arms, at home, at around seven days. It was pretty much a non event. Certainly less traumatic than birth!
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#24 of 63 Old 01-04-2010, 06:39 PM
 
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Being mostly an American site - I only ever just add that out of interest cause theres a bit of a difference between a handful of things compared to testing for 60-90+ things. The argument isnt really about whether or not they test for 4 things or 5 things.
I am pregnant and I have a right to be slightly annoying! lol

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Being mostly an American site - I only ever just add that out of interest cause theres a bit of a difference between a handful of things compared to testing for 60-90+ things. The argument isnt really about whether or not they test for 4 things or 5 things.
I am pregnant and I have a right to be slightly annoying! lol
I thought it would be helpful to provide more accurate information as to what is on offer here.
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#26 of 63 Old 01-04-2010, 06:50 PM
 
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Not a UCer, but I saw the topic pop up...

Here, babies are required to do the PKU test at 2ish days and again at 10-14 days of age. They screen for a number of other conditions besides PKU. Interestingly, the method my midwife used to collect the blood was much less painful-seeming than how our ped clinic did it. Either way I hated that DS hated it, but I also felt the screening was worth a minute or two or pain.

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#27 of 63 Old 01-04-2010, 07:13 PM
 
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Could you live with yourself if your baby had one of these conditions, that diagnosed could lead a normal life, and undiagnosed would lead to severe problems or even death, and you'd chosen not to do it to avoid a half-second poke and conspiracy theory fears of the DNA being stored? It's a little blood. The poke is not that bad (I've done the test on newborns who didn't cry at all, most only get irritated near the end when they are tired of you holding their foot) and it doesn't have to be done immediately (wait a week, or even a month-- almost none of the 40+ diseases screened for would cause damage before then).
My husband and I discuss EVERYTHING to death before we make a decision. We discuss the pros and cons. The worst case scenario. What we would do and if we could live with ourselves if a decision led to disaster. We discuss vaccines and lack thereof, the metabolic disorders test, UC, circumcision, when to give baby solids, family bedding, etc, etc, etc. So yes... we have thought it out and decided that we were making the right decision for our family.

I am so glad that some babies haven't cried at all! I wish my daughter had been one of them. It was a horrid, HORRID test, and I never want to repeat that. I wasn't in the nursery for her first test, but I had to take her to the lab for her second test a few weeks later. It was just awful. They laid her face down on this board and bent her foot so much that her toes were almost touching her shin. They poked her REPEATEDLY to get enough blood, while my 1-month-old was screaming bloody murder and PULLING herself across the padded board trying to get away. She literally moved herself a good 6 or 7 inches before it was over. A newborn. It took me about 20 minutes to calm her down after and for 2 or 3 days she would wake up screaming repeatedly. I assume these were nightmares. There is NO way I was going to subject my son to the same thing. No way in hell. If her test had been nicer, like the ones you describe, then I might feel differently.

My own history of getting PTSD makes me more sensitive to trauma.... even for newborn babies who 'won't remember it' and 'it is for their own good'

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#28 of 63 Old 01-04-2010, 07:19 PM
 
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I would also like to hear more about the DNA database kept...??? (I have a friend who is a forensic scientist for the state of Maryland and says she wishes there was such a database to make the solving of crimes a bit easier.... not that I agree... but that makes me think that there ISN't such a database???)
Yeah, hubby and I are quite the true crime buffs. We love hearing stories of forensics solving crimes. If there WERE such a database, things would be much easier with solving many rapes and murders. Of course when I was a kid, my parents refused to let us be fingerprinted because they had heard a rumor that all children's fingerprints were kept in a database.... as far as I know, there isn't a fingerprint database either, unless you have them done by the police.

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#29 of 63 Old 01-04-2010, 07:41 PM
 
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From reading about the following case, I learned that when people get a pap smear, they keep your DNA in some sort of database, although perhaps it's not always immediately available to law enforcement.

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Dennis Rader - for more than 30 years Rader eluded police in Wichita, Kansas, killing ten people and taunting police with the monogram: BTK, for Bind Torture Kill. Using a search warrant, investigators were able to obtain a Pap smear specimen from Rader’s daughter, which had been provided years earlier at a hospital in Kansas. A comparison of her DNA profile from the sample and DNA profiles left at the BTK crime scenes led investigators to conclude that she was the child of the killer. This information, along with other materials from the investigation, allowed police to get an arrest warrant for Rader. When confronted with the information, he confessed to the crimes.
http://www.denverda.org/DNA/Familial...e_Searches.htm
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#30 of 63 Old 01-05-2010, 01:38 AM
 
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it sounds like it isn't a DNA database, per se. But they DO keep tissue samples whenever you have a surgery or a test. I don't know where labs and hospitals can keep so many samples, but they do. I don't know for how many years either. We watched a true crime show where a woman's body was identified with DNA... even though they didn't have any of her family members... because her appendix was in a tissue lab. So not a DNA database, but if they can get ahold of the tissue samples, they can always take DNA from them. Of course they have to know who they are looking for first...

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