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Reason to refuse PKU test? - Page 4

post #61 of 84
Nobody ever told me my son was positive for PKU, or whatever it was. They said he needed further testing. Since he was never diagnosed as positive for anything in the first place, there was no false positive.
post #62 of 84
Quote:
Originally Posted by alegna View Post
Kudos to the dr. on wording then.

The common phrase is that a screen came back positive- it may be a false positive....

Even though the wording was not used with you, your son had a false-positive screen.

-Angela

No, it's not a false positive. Screening, by definition, screens for people with elevated risk who need more testing.

The test can either rule out something or not rule out something. NOT ruling out a condition does not mean the condition exists - it just means it cannot yet be ruled out.

My son's confusion about an eye test meant the ophthalmologist was unable to rule out colorblindness. He had to do an additional, more detailed test to discover whether my son had a color vision issue. If my son had turned out to have full color vision, that initial test was not a "false positive" it was just an indication for further investigation.
post #63 of 84
The lack of understanding by most media outlets of how such tests work is not justification for continuting to propagate incorrect information. Media outlets also like to say that IVF patients "had embryos implanted," a mistake in terminology that makes infertility patients crazy frustrated.

People do the same thing about the AFP or quad screen: "I got a false positive." No, you did not get a positive at all. You had elevated risk factors that indicated a need for further testing if you want to have a firmer answer.
post #64 of 84
I don't really think you looked at the web addresses posted some are not main stream misinformed- misused terminology places-the number of False-positive results in screening test is used to evaluate the usefulness of a test and ideally it is kept track of because there may be changes in the effectiveness of a screening test---now in order to figure out if a screening result is accurate further testing is done- after that testing you know if your screening result was a false positive result and that info adds to the data base of prediction accuracy -
here is a quote from a recent evaluation of the CF screening results in one state-
"The positive predictive value of a screen positive result in this population was only 0.3%. The bulk of screen-positive African-American infants were in the top 0.2% (IRT) group, with no CF mutations isolated. Repeat IRT testing at 2-3 weeks of age may represent a suitable approach to decrease the false-positive rate in this population. Pediatr Pulmonol. 2008; 43:638-641. (c) 2008 Wiley-Liss, Inc"

I would say that for anyone interested in newborn screening research and info about this subject in general- here is searchable site/info clearing house
http://genes-r-us.uthscsa.edu/
post #65 of 84
I will be asking about the urine test instead - this is however the UK and that may not be an option for us, but worth asking! Sounds much much better!!!
post #66 of 84
Quote:
Originally Posted by savithny View Post
The lack of understanding by most media outlets of how such tests work is not justification for continuting to propagate incorrect information. Media outlets also like to say that IVF patients "had embryos implanted," a mistake in terminology that makes infertility patients crazy frustrated.

People do the same thing about the AFP or quad screen: "I got a false positive." No, you did not get a positive at all. You had elevated risk factors that indicated a need for further testing if you want to have a firmer answer.

It's not a mistake in terminology. That is the correct terminology- some of those sites are scientific write-ups.


Quote:
Originally Posted by mwherbs View Post
I don't really think you looked at the web addresses posted some are not main stream misinformed- misused terminology places-the number of False-positive results in screening test is used to evaluate the usefulness of a test and ideally it is kept track of because there may be changes in the effectiveness of a screening test---now in order to figure out if a screening result is accurate further testing is done- after that testing you know if your screening result was a false positive result and that info adds to the data base of prediction accuracy -
here is a quote from a recent evaluation of the CF screening results in one state-
"The positive predictive value of a screen positive result in this population was only 0.3%. The bulk of screen-positive African-American infants were in the top 0.2% (IRT) group, with no CF mutations isolated. Repeat IRT testing at 2-3 weeks of age may represent a suitable approach to decrease the false-positive rate in this population. Pediatr Pulmonol. 2008; 43:638-641. (c) 2008 Wiley-Liss, Inc"

I would say that for anyone interested in newborn screening research and info about this subject in general- here is searchable site/info clearing house
http://genes-r-us.uthscsa.edu/
:

Thanks!

-Angela
post #67 of 84
Quote:
Originally Posted by ann_of_loxley View Post
Well, since PKU is something inherited from both parents, if you know that both parents do not have this biochemical abnormatility (or that at least one of you doesn't), and you also feel the heel prick is 'too painful' - then you can feel comfortable in opting out of it.
Haven't read the whole thread, so I'm not sure if someone else addressed this, but this statement is absolutely incorrect.
PKU is a recessive gene; it can be carried as a recessive by both parents. They would not know they were carriers, and there may not be a family member in several generations who had PKU.
Y'know, I believe in science and in evidence and in logical, critical thinking. That's one reason why I had a homebirth -- because it seemed to me that many elements of obstetrics as practiced in America are not evidence based and don't produce the best results. And that's one of the things that drives me so crazy when I come on here and see people arguing against the PKU testing. Honestly, I have not heard a single argument against the testing that has a shred of logic. It seems like most of them are based out of a knee-jerk reaction against the medical establishment. It's fine not to trust the medical establishment. But that's not a valid reason to avoid the PKU testing.
Some of the diseases it tests for are devastating if they're not caught early, but simply a dietary inconvenience is they are caught. They are rare, but there is virtually no risk to the test. It's a tiny prick with the needle. It may hurt the baby a little, though my son cried for less than 20 seconds when the midwife did it. And 20 seconds of pain followed by lots of nursing and cuddles from mama is a whole lot better than a lifetime of severe mental retardation that could have been avoided.
If you do get a false positive, sure, it's scary. But you don't have to break off the breastfeeding relationship. That's not a reason to not do the test.
post #68 of 84
Quote:
Originally Posted by alegna View Post
I agree that it's a personal choice. I would never encourage a mama not to do the tests if they felt they needed to.

For us, in our situation, I choose not to do it. That was the question raised. Just sharing our point of view.

-Angela

I just had to raise my hand and admit that I did not do the newborn screening with my youngest dd.

I am surprised at how much harshness there is aimed at those that choose (for whatever reason) not to get it done.

The "oh my g*d what if something happened???? How could you live with yourself!??" type of thing can be said for a ton of MDC type topics. (not quoting a poster, just a general type attitude that I see many place online and in real life)

I am sure that there is some out there that will read one thread on MDC and make up their mind "because so and so said so" But most, very close to all, parents on here put WAY more thought into than that.


post #69 of 84
Quote:
Originally Posted by dnr3301 View Post
they test for more than just PKU, at least in most states (I don't know about other countries). I know in MN, it's 53 disorders. In Wisc, it's 47. In Iowa, it's only 7 or so. In ND, it's 47; SD it's at least 20 (they include all of the blood issues in one thing that says __ and other disorders, so I can't tell how many that is). In TX, it's 27.
Nope, Iowa tests for close to 40 things, but yes, it does vary by state. Personally, I decline pretty much everything and had my last child at home but we do the metabolic screening and hearing test. There is just no down side for me on these, pain to my baby is of course crappy, but like other have said, it can be done respectfully and is worth the potential payoff.
post #70 of 84
I believe in evidence based medicine. (also why I had a homebirth :-) ) I would never decline a test that had such a small downside. (small discomfort to baby) Me being worried and having to wait to have a more thorough test done is definitely not reason enough for me not to do a potentially life saving screening. But to each their own I guess.
post #71 of 84
so the UK system determined that the evidence of risk/benefit ratio for their populations was too low to embrace universal blood drop screening for more than the 4 tests they do offer-- and maybe they are right- .3% accuracy from a positive result for CF is not a very accurate screening test and for the African American population even less accurate to have that particular test -- especially because the result of a positive screen has been studied and shown to change parental behaviors for a long time after- just how accurate are the tests panning out to be now that they have been in use? heck we have pregnant women refuse the glucose screening tests and they are 25-50% accurate predictive value -- and we have been advised to discontinue routine dip stick urine screening and even the least accurate result on it has a much higher predictive value-- there is quite a bit of discussion about evidence but truly I was astounded at how low the accuracy was for CF... this is looking like another big research project...
post #72 of 84
I just have to say, I COMPLETELY get where Angela is coming from. The rates of "false positives" (using this term for the sake of conversation) ARE high. And I completely understand her fear of unnecessary cessation of breastfeeding. Look at some of MDC's articles on breastfeeding and HIV. Pregnancy is a condition KNOWN to cause a "false positive" (in testing that has no standard to begin with) and the moms that were FORCED to stop breastfeeding. By CPS, court orders, etc. I know the metabolic disorder testing doesn't have nearly the same stigma as HIV but all it takes is ONE doctor who thinks it's a big deal/doesn't support breastfeeding/isn't educated enough on the risks of not breastfeeding to make a simple call to CPS. And, sure, it's unlikely they can truly force you to stop but there have been cases of women having "spot checks" at home to make sure they're not nursing, having to bottle feed in public (which poses its own risks even if it has breastmilk in it), even taking a baby into custody. Unlikely? Very. Possible? Most definitely.

That said, I personally believe I will choose to get it done for future babes (and did with DS). And, god/dess forbid it comes back "positive," and it is recommended that I stop breastfeeding, I will bite my tongue, take whatever formula, and lie my behind off about nursing. I only hope it would be that "easy."

Also, can we please get off the "false positive" argument? I think we all know what we're talking about, whether the wording is incorrect or not.
post #73 of 84
NOTE: IF YOU CHOSE TO DO THE URINE TEST IT MUST *MUST* BE DONE WHEN YOUR BABY IS OLDER THAN 6 WEEKS.

Before this and you will not get accurate results (for PKU anyways). The reason they do the blood one is because it can be done soon after birth and by 6 weeks some brain damage is already done (for PKU)...
post #74 of 84
Every test has a false positive and a false negative rate (as well as true positive and negative rates). In a screening test, you set it up to tolerate a high false postiive rate (which then go on to have cofirmatory testing) so you do not have any (or many) false negatives. The term is used correctly in the case of the newborn screening.
post #75 of 84
We did it with my first child (homebirth with a midwife), but not with my second (UC).

I'll tell you why we made that decision. Not because of any drawbacks, but because we really felt that the chances were so, so low. My ex-husband & I are light-eyed, light haired people, so my dd came out with blond hair and light eyes. PKU is extremely rare, but those who do have it tend to be very fair. I have read that 250 children/year are born with PKU in the US, and 90% of them have light skin, hair & eyes.

My second husband is from Puerto Rico, and he has brown eyes and black hair. Our son has brown eyes and brown hair. The incidence of PKU in people with Hispanic (or Black or Asian) heritage and coloring like this is super low.

The doctor we took him to at 5 days gave me a side-eye smirk and shook his head when I asked if he thought we should do it. I don't know what his reasons were, but since we were already not leaning toward it, we didn't do it. We felt safe enough that he didn't have it, and that's the only reason why we didn't do it.

Now- at the time we didn't really think about the other metabolic disorders they are screening for. It's possible that ds could have had just as much (or more) chance of one of those as anyone else does. We're having another UC this time and we may do the screening. Or not.
post #76 of 84
I think part of intelligent decision making is looking at both likelihood and risk.
There is a low likelihood of any single baby having one of the metabolic disorders, but there's also virtually no risk to the screening test (except for the hypothetical risk of interfering with the breastfeeding relationship, but best practices don't indicate that you should stop breastfeeding at an initial positive result, so that's moot).
post #77 of 84
Quote:
Originally Posted by *MamaJen* View Post
I think part of intelligent decision making is looking at both likelihood and risk.
There is a low likelihood of any single baby having one of the metabolic disorders, but there's also virtually no risk to the screening test (except for the hypothetical risk of interfering with the breastfeeding relationship, but best practices don't indicate that you should stop breastfeeding at an initial positive result, so that's moot).
Honestly, the only reasons I see for people not doing the test are a knee-jerk reaction against the medical system, and poor understanding of metabolic disorders and the screening test.
My understanding is that a positive screen for galactosemia DOES require the cessation of breastfeeding.

-Angela
post #78 of 84
I guess I just cannot understand how the remote chance that your child may require further testing to confirm the diagnosis of a variety of, some life threatening, diseases which could, but as has been shown several times on this page, disrupt the breastfeeding relationship is a valid reason for skipping the test altogether.
post #79 of 84
Quote:
Originally Posted by ann_of_loxley View Post
Also - maybe their diet is already suited to a child with PKU? (for example, I know mine is)
You eat a PKU diet? Why? You implied that you've been tested and found negative, so why would you eat a PKU diet?
post #80 of 84
Quote:
Originally Posted by alegna View Post
deleted
I'm still waiting to see actual research on what the cons to this test are. False positives or not, it's still a valid test that can prevent possible brain damage in your baby.
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