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Reason to refuse PKU test? - Page 2

post #21 of 84
Thread Starter 
Quote:
Originally Posted by alegna View Post
It's a risk/benefit analysis, like anything else. One of the things I considered a "risk" in my decision making was false positives- which are far too high for my comfort.

-Angela
Why is that a risk? If you know there are a high number of false positives, then you get a more sensitive test and wait to worry until that test is returned. That doesn't seem like a rational reason for rejecting a test that could save a baby's life.
post #22 of 84
I declined with my dd, thinking it was just another routine thing, and I had avoided all the other routine things, so why bother.

then she had a stroke at 17 months, and they did the test then. Luckily, it had nothing to do with anything like that, but it would have been nice to have been able to say we had already done it. She's fine now.

I did the test with my second, and will with my third. I dragged my 4-5 day pp butt into the hospital and asked for the special care nursery nurse to do the draw.

I used to think it's no biggie to skip it, but I have a friend sho had a baby, thought about declining, then did it, it came back showing something, baby is fine, because she is on meds for the rest of her life. If they had waited even a week to do the testing, most likely would have had brain damage and metal retardation.

Most of the stuff they are testing for, it's not about a family history, or waiting for symptoms. Waiting for symptoms is stupid. By the time you see them, it's too late to prevent them. We're not talking about fevers or spots, we're talking blindness and severe mental retardation that could easily be prevented. False positives? ok, retest. how does that hurt?

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.
post #23 of 84
If you are uc'ing...you can get the blood dot cards and do it yourself and mail it in to wherever the doc would send it. you might want to be familiar with lancets though..

oh, and in regards to false positives. Like with any diagnosis (cancer, pneomonia etc..) they repeat the test to confirm. In this case the repeat test is a much more detailed look at the specific disease in a much more complicated way..its still just blood though.
post #24 of 84
Quote:
Originally Posted by poiyt View Post
If you are uc'ing...you can get the blood dot cards and do it yourself and mail it in to wherever the doc would send it. you might want to be familiar with lancets though..

oh, and in regards to false positives. Like with any diagnosis (cancer, pneomonia etc..) they repeat the test to confirm. In this case the repeat test is a much more detailed look at the specific disease in a much more complicated way..its still just blood though.
really? where would I find information on this (without telling my dr I plan to UC)?
post #25 of 84
hmm we have them already because of dh..but if you know a uc friendly midwife...or you may be able order online but would have to order a package of them.
post #26 of 84
i had both my kids screened, but my daughter's test was not done properly (not enough blood, i guess), so it was sent back to the midwife. i neglected to get it done again- it just didn't seem important at the time.

15 months later she was ataxic with several other problems, and it came to light that she had never had her metabolic screening. The guilt and dread I felt while I waited for those test results was overwhelming. I would not wish that feeling on anyone. She does not have a metabolic issue, thank goodness, but if she had that would have been something we would have had to deal with for the rest of her and my life- that I allowed, through my negligence, my daughter to suffer through a treatable disorder.

i will take the stress of a false positive or inconclusive test over that, any day!!! seriously- i am as woo as it gets but some tests and procedures are just. good. they just are.


I will be lining up for the screening if I have any more kids!
post #27 of 84
Quote:
Originally Posted by lalaland42 View Post
Why is that a risk? If you know there are a high number of false positives, then you get a more sensitive test and wait to worry until that test is returned. That doesn't seem like a rational reason for rejecting a test that could save a baby's life.
A number of conditions on the screen require you to NOT nurse if you get a positive (false positive) so an early interruption to the nursing relationship is a real possibility. All for something that is very very rare.

Like I said- it's a risk/benefit thing. Every parent needs to decide for themselves

-Angela
post #28 of 84
Yes, these disorders are rare. They also cause death and permanent brain damage. The absolute risk is small. The magnitude of that risk is huge. I would rather risk my breastfeeding relationship than preventable brain damage. My children will survive and be healthy with formula. A PKU or galactosemic baby will be permanently, irrevocably damaged from breastmilk.
post #29 of 84
most of the disorders are rare- most common in our region is the hypo thyroid- I guess the biggest draw back is that for most diseases it is just a screening test ( for CF it could be state of the art diagnostic but most state laws have not changed so you still have to go through the other testing) any how as all screening tests go there are more false positives than actual cases of genetic disorders and parents tend to think that there is something very wrong even after the diagnostic tests show that there is no problem--
so that would be the main drawback- you can also get an expanded set of tests that include things you state may not have decided to ok - there are labs in Texas I know of that do the expanded testing--


one of the tests in the UK is for MCADD-
Medium Chain Acyl CoA Dehydrogenase Deficiency I don't know what the others are... there is a great deal of discussion going on because of the way things can be screened now - and the UK may very well start offering more screening

-------------
I looked for and found the UK info they actually have a different take on "screening" in general check out what they say(basically physical exams are screening)
here is what they do screen for in the newborn

* Newborn bloodspot screening: Phenylketonuria (PKU) | Congenital Hypothyroidism | Cystic Fibrosis | Medium Chain Acyl CoA Dehydrogenase Deficiency (MCADD) | Sickle Cell Disease
* Hearing
* Newborn physical examination: Developmental dislocation of the hip | Congenital heart disease | Cryptorchidism | Congenital cataracts and other structural eye anomalies | Congenital malformations

and here is a web link for anyone interested in some of their policies- it includes childhood pregnancy and adult health screenings of different types-
http://www.screening.nhs.uk/policies
post #30 of 84
Quote:
Originally Posted by alegna View Post
A number of conditions on the screen require you to NOT nurse if you get a positive (false positive) so an early interruption to the nursing relationship is a real possibility. All for something that is very very rare.

Like I said- it's a risk/benefit thing. Every parent needs to decide for themselves

-Angela
But the result of the screen is not a "false positive." It's an indicator that further testing is needed. The further testing is what comes up "positive" (meaning the child does have PKU/galactosemia/etc), and then breastfeeding needs to stop because it is causing damage to the baby.
You (general) may be dismissing a valuable test based purely on (incorrect) semantics -- I would hate for someone reading this to be swayed by unfounded fears of "false positives."
post #31 of 84
Quote:
Originally Posted by sophiekat View Post
But the result of the screen is not a "false positive." It's an indicator that further testing is needed. The further testing is what comes up "positive" (meaning the child does have PKU/galactosemia/etc), and then breastfeeding needs to stop because it is causing damage to the baby.
You may be dismissing a valuable test based purely on (incorrect) semantics -- I would hate for someone reading this who hasn't done your "research" to be swayed by unfounded fears of "false positives."
In many areas the health department will step in to ensure that you STOP breastfeeding after a positive screen. It can take weeks for the accurate testing to occur.

Statistically it's MUCH more likely to have a false positive than a real one.

-Angela
post #32 of 84
Quote:
Originally Posted by alegna View Post
In many areas the health department will step in to ensure that you STOP breastfeeding after a positive screen. It can take weeks for the accurate testing to occur.

Statistically it's MUCH more likely to have a false positive than a real one.

-Angela
As sophiekat has explained, it's not more likely to have a false positive, because the result is not actually a false positive--it's more like a maybe.

And how can the Health Department ensure that breastfeeding will STOP? If your doctor insists, nod, take the special formula home, keep breastfeeding quietly until the results from the second round of tests are in, then take it from there.
post #33 of 84
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
post #34 of 84
Alegna,
I respect your posts much of the time, but how would you feel if you had chosen to decline this test only to find out, 8 weeks later, that your baby did indeed have PKU?? I am honestly curious.
post #35 of 84
Quote:
Originally Posted by alegna View Post
In many areas the health department will step in to ensure that you STOP breastfeeding after a positive screen. It can take weeks for the accurate testing to occur.

Statistically it's MUCH more likely to have a false positive than a real one.

-Angela
It is much more likely you will receive a notice for more testing, which then comes back negative, rather than a notice for more testing followed by a positive. That is the point of a screening - if it was a 100% accurate, in depth test it wouldn't be a screening. It would be more accurate, but to test for every disorder covered under newborn screening would take a lot of time, money, and a much larger blood sample from each newborn. A screening is designed to be quick, and is supposed to catch more kids who are fine than those who are really ill. The reasoning is that you can never be 100% (see above) on a quick screen, and going the other direction causes you to miss kids who actually are sick - leading to preventable, permanent damage. It's all a balancing act. This is the same as the hearing screening, or the developmental screens schools do before kindergarten. They ask a lot of kids to come back for testing, only to find out they are fine - that is how it is supposed to be. Only, for the metabolic screening the stakes are much higher.

It is useful to be armed with information from reliable sources. Standard of care is to continue a regular diet until the actual test proving a positive or negative comes back. You do not want a baby without PKU on a PKU diet. There are misinformed doctors out there, so knowing the procedures, what a result means, and when it means you should change your care of your child are all important pieces to the puzzle. However, this does not mean that a result on the screen changes your breastfeeding relationship, since it should not.

The problem with this screening, and turning it down is that there is no way to predict a lot of these disorders. There may be absolutely no family history, prenatal screening does not test for them, and by the time symptoms show up, the damage is irreversible. It is a choice, and I would never want to take that choice away from a family. But as long as the parent is educated about what each result means, and what to do, it is not risky.

If you are concerned that your doctor is not familiar with what to do with a baby who gets a referral for more testing from this test, please talk to him or her before the birth, and make sure you are on the same page. I would leave a doctor who wasn't willing to work with our vax status - if this is an issue that is a deal breaker, discuss it!
post #36 of 84
someone asks about what the drawback is and that is it - the info from studies on parental behavior show that parents of children with false positives need much more support and info and it needs to be VERY clear that there is nothing necessarily wrong with a baby who has a positive screening test but when diagnostic tests are done they come up negative-- I would personally go for the expanded tests- and the people I know who were part of the state selection committee who gave recommendations say pay for the extra testing because if your kid has a problem why not catch it early most of the metabolic disorders have some sort of dietary or medicine support that inhance the child's life

when I was a kid there was no really special ed for kids with special needs and I remember one kid- Fred who I would say had maple syrups, another kid Andy who had cretinism,both of these kids with todays screening would most likely have not had the impairments these boys suffered
post #37 of 84
Quote:
Originally Posted by homemademomma View Post
Alegna,
I respect your posts much of the time, but how would you feel if you had chosen to decline this test only to find out, 8 weeks later, that your baby did indeed have PKU?? I am honestly curious.
I can't say for sure. I'm sure, like any mother, I would be devastated to have an ill child at first. As to how much damage would be done at that point and irreversible... hard to say.

The much more likely scenario though is a false positive and a breastfeeding relationship ruined. How would I feel about that? Angry. Devastated.

All choices carry risks. I think all parents should be informed of all risks of ALL choices they make involving their children.

-Angela
post #38 of 84
Scare tactict? - She is simply voicing her opinion, what she and her family chose to do. Stating things like 'suffering from brain damage!' and 'death!' sound like scare tactics to me (just from whats been posted, not what you said). The OP wanted to know why anyone would refuse this test - she refused, and explained why. For her and her family, that is good enough.
I agree - its a risk, just like choosing to vax or not (and the same stigma surrounds that, though being MDC, people tend to be more open minded here about people choose to or not to vax at all). It is also just a personal decision just the same. Some of the posts on this thread is sure giving me the tone of 'slating' - and on MDC, where we as a community tend to do things very different from the majority of the western population, I would hope this forum, including this thread, would be more open minded to different people, different opinions and practices.
I hope the Ops question was answered. It may not be what she agrees with but the world is made up of all different kinds of people with different opinions and different life practices. If you don't agree with refusing it, a simple 'We do it because we believe the pain of a heel prick is worth the tests as we feel what they test for is serious enough to know if my baby has it or not is worth it' should suffice really because the OP asked why people would refuse it - not why you choose to do it. You of course, can answer this post how you choose to, but seriously - open mind ladies, stop attacking people!
post #39 of 84
Quote:
one of the tests in the UK is for MCADD-
Yes - I see that was introduced March of this year - so not long ago. But knowing the NHS and how our whole country runs as a whole, it says 'by' march of 2009 ...so it may not actually be in effect yet! lol
post #40 of 84
Quote:
Originally Posted by alegna View Post
I can't say for sure. I'm sure, like any mother, I would be devastated to have an ill child at first. As to how much damage would be done at that point and irreversible... hard to say.

The much more likely scenario though is a false positive and a breastfeeding relationship ruined. How would I feel about that? Angry. Devastated.

All choices carry risks. I think all parents should be informed of all risks of ALL choices they make involving their children.

-Angela
I don't understand how your BF relationship would be ruined, since you would not stop BF until you had an actual positive test?
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