# Reason to refuse PKU test?



## lalaland42 (Mar 12, 2006)

Is there any medical reason for refusing the metabolic disorders (PKU etc) test? We did it with DD and I am planning on doing it again with this bebe but someone said they researched it and decided against. They couldn't support their decision because it had been too long but I thought someone here might know the reasons behind refusing the test.

With the seriousness of PKU and other metabolic disorders, saying the heel prick is "too painful" is not enough for me to change my mind. I am looking for other reasons.

Thanks!


----------



## ann_of_loxley (Sep 21, 2007)

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.

Also - maybe their diet is already suited to a child with PKU? (for example, I know mine is) - So they may feel comfortable in testing the child at an older age. Because treatment for PKU is just dietary changes with a special diet.

Also - from my understanding, it needs to be done within the first month but _not_ right after the baby is born as the test results will be inaccurate - yet many hospitals in America do the test within the first few days of a babies life - which is pointless.

PKU is very rare, though you probably already know that. Maybe someone feels comfortable enough with the extreme rarity of it to opt out of it?

I am personally deciding wether or not to opt out of the heel prick tests at all myself as we are free from PKU inheritance. They also only check for four things here in the UK and PKU is the only serious one (that needs diagnosing sooner rather than later) - there also isn't a chance in heck that sickle cell is gonna be a problem for our family either!


----------



## crunchy_mama (Oct 11, 2004)

However, the PKU tests for many, many more metabolic disorderes than just PKU itself. I don't understand why you wouldn't.


----------



## ann_of_loxley (Sep 21, 2007)

Quote:


Originally Posted by *crunchy_mama* 
However, the PKU tests for many, many more metabolic disorderes than just PKU itself. I don't understand why you wouldn't.

Not in this country - they only check for four things.


----------



## savithny (Oct 23, 2005)

Quote:


Originally Posted by *ann_of_loxley* 
Not in this country - they only check for four things.

but one of those things is probably galactosemia, which would need to be "treated" immediately by stopping all lactose ingestion, yes?

And unlike PKU, the galactosemia test does not require the waiting period - the test is accurate even before the child has begun nursing. So not only is that test more applicable to people who are breastfeeding, because they would have to change what they're doing - but it is accurate from the very beginning.


----------



## ann_of_loxley (Sep 21, 2007)

Nope - they do not check for that. Never even heard of it.


----------



## 2lilsweetfoxes (Apr 11, 2005)

I refuse all newborn interventions except the tests. My husband and I have not been tested to see if we are carriers, and knowing the disorders are recessive, one could technically have 10 kids that are not affected and the 11th be affected. (or the first be affected--ya never know).


----------



## AlexisT (May 6, 2007)

ann_of_loxley, how can your diet be suitable for PKU? In the strictest form of the PKU diet, all sources of protein are eliminated. And breastmilk contains phenylalanine, so you can't just breastfeed a PKU baby (you can give some breast milk but it needs to be supplemented with PKU formula).


----------



## AlexisT (May 6, 2007)

Savithny, UK does not screen for galactosemia. I think the logic is that unlike PKU, it presents with symptoms.

I wonder how you could know you are PKU free--most people have not had genetic testing. It's dangerous to assume that you are not because you have never had a PKU baby in either family. Since the mutation is rare, it's unlikely that 2 carriers will marry and have a child--and you could have a whole family of carriers where only 1 married another carrier, and same for the other side. You'd never know.


----------



## Aridel (Apr 25, 2004)

Quote:


Originally Posted by *ann_of_loxley* 
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.

Also - maybe their diet is already suited to a child with PKU? (for example, I know mine is) - So they may feel comfortable in testing the child at an older age. Because treatment for PKU is just dietary changes with a special diet.

Also - from my understanding, it needs to be done within the first month but _not_ right after the baby is born as the test results will be inaccurate - yet many hospitals in America do the test within the first few days of a babies life - which is pointless.

PKU is very rare, though you probably already know that. Maybe someone feels comfortable enough with the extreme rarity of it to opt out of it?

I am personally deciding wether or not to opt out of the heel prick tests at all myself as we are free from PKU inheritance. They also only check for four things here in the UK and PKU is the only serious one (that needs diagnosing sooner rather than later) - there also isn't a chance in heck that sickle cell is gonna be a problem for our family either!

It's great that you were genetically tested and found clear of being a carrier! That information does make some choices like this so much easier!

It's too bad the UK only tests for four disorders - even though they're rare, many of the issues that the newborn screens here look far are very serious, and very treatable.

It's true that the results are not accurate until after the baby has nursed - if I remember correctly it has to be at least 12 hours after birth, and after the baby has had actual breastmilk (or formula) not just colostrum. Then it should be followed up a few weeks later with a second screen.

OP - I would feel comfortable refusing the screening in the hospital and getting the screening done at the pediatrician's office. I would also research ahead of time: the general rule is to keep a typical diet until after the re-test is done, even if the screening is positive, but some doctors tell women to stop breastfeeding before the follow up results come back. I wouldn't stress about it, since these disorders are so rare, but just be prepared with research in case you do have a positive screen.


----------



## Youngfrankenstein (Jun 3, 2009)

Even though we'll be skipping the norm newborn stuff, we will have the metabolic screen done. My midwife does it herself and recommened it.


----------



## Beppie (Oct 24, 2005)

Our last child was born at home and the PKU was the only thing that we did. We took her in when she was 10 days old. My midwife is very non-interventionist, but PKU was one thing she recommended. I don't know of any reason why you wouldn't do it, except that the little one usually cries







but nursing usually soothes them!


----------



## jillmamma (Apr 11, 2005)

Where I live (Texas), it is required by law (does allow for religious exemptions only), so as I have no religious issues with it, I plan to do it for this one like I did for the first two. If you choose not to, you may want to see what the laws are in your area and what exemptions are allowed to be sure you can satisfy those.


----------



## dogmom327 (Apr 19, 2007)

I think the test here in Oregon tests for like 30 conditions? We went ahead and had it done for both kids when they were a week old.


----------



## poiyt (Jul 6, 2008)

Quote:


Originally Posted by *ann_of_loxley* 
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.

Also - maybe their diet is already suited to a child with PKU? (for example, I know mine is) - So they may feel comfortable in testing the child at an older age. Because treatment for PKU is just dietary changes with a special diet.

Also - from my understanding, it needs to be done within the first month but _not_ right after the baby is born as the test results will be inaccurate - yet many hospitals in America do the test within the first few days of a babies life - which is pointless.

These 3 statements are incorrect

My husband has pku, so you can imagine the extensive research we have done, and genetisits and nutritionists we've talked to.

There is no such thing as carrier testing for PKU. You cannot know you are a carrier unless your child has pku, or your parent has pku. For example, all our kids will be carriers b/c of my husband. Even if all our kids are negative its still no guarantee that Im not a carrier (If i am our kids have a 50% chance of having the disease, for two carriers its 25%) There is a test, that in Canada costs $7500, that can look for a small abnormality which tells you the percentage of liklihood that you are a carrier (like the triple screen test during pregnancy for downs). It also yields so many innacurate results that no provider here will recommend it.

You cannot have a phe free diet. Its not protein you need to avoid: its phenylalanine; it just so happens meat is a high source of Phe. Phe is in bread, pasta, alcohol, some veggies...etc...It would be virtually impossible to have a no/low phe diet unless you were specifically avoiding phe - but why would you?

Pku testing can be done at anytime once the baby has started to digest breastmilk - not colustrum. You can test a baby at 3 months, 2 yrs. Delays will start to show at around 8 weeks. Its important for those with pku to go on the low phe diet asap, so its better to start at 2yrs than not at all.

Obviously, I recommend the pku,metabolic diseases test...


----------



## lalaland42 (Mar 12, 2006)

Thanks for all the information! I am quite comfortable with nursing through a heel prick. We will be in Switzerland when the baby is born and I am not sure what metabolic disorders they check for but I will ask our midwife when we get there.

I know PKU and other metabolic disorders are rather rare but I would be devastated if my baby got irreversible brain damage or died when I could have prevented it with a heel prick and diet change.


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *jillmamma* 
Where I live (Texas), it is required by law (does allow for religious exemptions only), so as I have no religious issues with it, I plan to do it for this one like I did for the first two. If you choose not to, you may want to see what the laws are in your area and what exemptions are allowed to be sure you can satisfy those.

It's easy to opt out of in TX.

-Angela


----------



## alegna (Jan 14, 2003)

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


----------



## Norasmomma (Feb 26, 2008)

I just watched a baby get the heal prick at my Dr office a month or 2 ago. The lab tech there is wonderful and he warms the baby's heal with a warm washcloth to bring the blood to the capillaries, he then uses one of those glass rods to do the blood draw. The baby didn't even wince, she slept through the entire process, no crying, no nursing, nothing, she just slept. I was totally amazed at his way of doing this test, he said he has tried to get the hospital staff to do it, where our DD and our current baby will be born. He said he's taught them this procedure, but many of them don't do it and so like our DD the baby screams. Ugh it's horrid.

I am going to ask if I can wait until the follow up appt, so he can do it or take our baby to my Dr's office so he can do it rom the get go. It was just such a better method.


----------



## Astraia (Jan 1, 2009)

For DD, the midwife said that they test for (I think she said?) 32 disorders with the heel stick test.

We're UCing for this baby, but I plan to bring baby to a dr 5-10 days after birth to get the testing done.

All I know about it is that it's important to wait until your milk comes in so baby isn't getting colostrum... other than that, no idea when it's supposed to be done. With DD, the midwife did it 5 days after she was born.

She warmed her heel with hot water first as well, and DD barely cried.


----------



## lalaland42 (Mar 12, 2006)

Quote:


Originally Posted by *alegna* 
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.


----------



## dnr3301 (Jul 4, 2003)

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.


----------



## poiyt (Jul 6, 2008)

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.


----------



## Astraia (Jan 1, 2009)

Quote:


Originally Posted by *poiyt* 
*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)?


----------



## poiyt (Jul 6, 2008)

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.


----------



## homemademomma (Apr 1, 2004)

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!


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *lalaland42* 
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


----------



## AlexisT (May 6, 2007)

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.


----------



## mwherbs (Oct 24, 2004)

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


----------



## sophiekat (Oct 29, 2005)

Quote:


Originally Posted by *alegna* 
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."


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *sophiekat* 
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


----------



## sugaree (Apr 5, 2007)

Quote:


Originally Posted by *alegna* 
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.


----------



## alegna (Jan 14, 2003)

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


----------



## homemademomma (Apr 1, 2004)

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.


----------



## Aridel (Apr 25, 2004)

Quote:


Originally Posted by *alegna* 
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!


----------



## mwherbs (Oct 24, 2004)

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


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *homemademomma* 
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


----------



## ann_of_loxley (Sep 21, 2007)

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!


----------



## ann_of_loxley (Sep 21, 2007)

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


----------



## Bluegoat (Nov 30, 2008)

Quote:


Originally Posted by *alegna* 
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?


----------



## Aridel (Apr 25, 2004)

Quote:


Originally Posted by *alegna* 
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

That's why you need to do your research, so that you can have the info to back you up on continuing to breastfeed until your test results came back. There does need to be more public awareness of what the results mean, but that doesn't mean it's a bad test.

Or, if you have a pushy doctor, use this as one of your interview questions and change doctors.

FWIW I'm not trying to use scare tactics. It is incredibly unlikely that a child will have one of these disorders, since they are so rare. Even if you refuse testing, your child will most likely be fine. But there is no benefit to not having the test (again, as long as you have made sure your doctor and yourself understand what the _screening_ is) and there is a risk. The symptoms that show up with PKU, and some of the other diseases are caused by brain damage that is not reversible. That can be the first sign that you need to get your child checked out.

So it's very, very unlikely, but it's very, very dangerous if you're one of the unlucky ones.


----------



## triscuitsmom (Jan 11, 2007)

Quote:


Originally Posted by *gsd1amommy* 
Again, the newborn screening is exactly that---a screening and its result is not a "false positive." It is simply an indication that further testing is needed. The result of the further testing is what reveals a positive or a negative. I don't understand the scare tactic you use so frequently by crying "false positive".

But a "false positive" is exactly how it can be treated. I can think of at least one case of a Mom here on MDC and I know of two more on another board who were told that they MUST stop breastfeeding when they were flagged positive. The Mom here got her daughter back on the breast I believe but the other two did not (one was upset about it and pumped, the other one let it go more easily and didn't persue it after the further testing came back). All three did not have the disease they were screened positive for.

This is coming from someone who had the screen done. And will again. But I see both sides and I strongly considered not doing it. It's not as black and white as some people make it seem.

Breastfeeding a baby who *may* have a *rare* disease could result in drastic life long negative consequences for the baby. Not breastfeeding a baby who *may not* have that *rare* disease could result in drastic life long negative consequences for the baby. There are choices to be made but it's not cut and dried.


----------



## Aridel (Apr 25, 2004)

Quote:


Originally Posted by *triscuitsmom* 
But a "false positive" is exactly how it can be treated. I can think of at least one case of a Mom here on MDC and I know of two more on another board who were told that they MUST stop breastfeeding when they were flagged positive. The Mom here got her daughter back on the breast I believe but the other two did not (one was upset about it and pumped, the other one let it go more easily and didn't persue it after the further testing came back). All three did not have the disease they were screened positive for.

This is coming from someone who had the screen done. And will again. But I see both sides and I strongly considered not doing it. It's not as black and white as some people make it seem.

Breastfeeding a baby who *may* have a *rare* disease could result in drastic life long negative consequences for the baby. Not breastfeeding a baby who *may not* have that *rare* disease could result in drastic life long negative consequences for the baby. There are choices to be made but it's not cut and dried.

This is exactly why people do need to do their research - so that they know what a result means.

The test is functioning as it is supposed to, and is not giving bad data. Doctors and parents are just misinterpreting that data. Not surprising, since doctors often don't value the breastfeeding relationship highly enough, and there is so much for new parents to be aware of that this doesn't often come up as an issue.

The answer would appear to be making sure your doctor and yourself know what to do if the test results come back as refer, rather than pass.


----------



## wombatclay (Sep 4, 2005)

*THIS IS A MESSAGE FROM YOUR FRIENDLY NEIGHBORHOOD MODERATOR









When composing your posts, please keep the following portions of the MDC User Agreement in mind:*

Quote:

Do not post in a disrespectful, defamatory, adversarial, baiting, harassing, offensive, insultingly sarcastic or otherwise improper manner, toward a member or other individual, including casting of suspicion upon a person, invasion of privacy, humiliation, demeaning criticism, name-calling, personal attack or in any way which violates the law.

Quote:

Do not post or start a thread to discuss member behavior or statements of members made in other threads or to criticize another discussion on the boards. Do not post to a thread to take direct issue with a member. If you feel a member has posted or behaved inappropriately in a discussion, communicate directly with the member, moderator or administrator privately and refrain from potentially defaming discussion in a thread.
*The MDC community provides support to members with a wide variety of opinons, beliefs, and practices. If you are concerned about a specific post or feel a thread would benefit from closer moderator attention, please contact a moderator or administrator directly (either by PM or by clicking on the "!" report button in the bottom corner of the post in question).

Please let me know if you have any questions or concerns. Now back to the thread!*


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *savithny* 
You know, the problem is that it is incredibly frustrating to see people posting reasons why they would not do the test it that are full of misinformation or outright incorrect information. A lot of people do not really "do research" on the pros and cons of such things; they come to MDC and listen to you, or Angela, or others, and they walk away saying "Oh, Ann and Angela did their research and they think its unneccessary or too big a risk."

When it is clear to someone who does understand the test and how it works that someone is dismissing it without even understanding it -- usually based on "research" they read here, it is hard not to get agitated. Especially since we know that some of the people dismissing the utility of this test are seen as highly knowledgeable *leaders* at MDC, whose opinions are often taken as truth without questioning.

Those asking the questions here *are* open-minded. Their minds are open to the facts of the research behind the test and the mathematics involved in calculating statistical risk factors.

Even the state run sites discussing the newborn screen use the phrase false positive. I'm not sure what the objection is to it. It is a correctly used term in this context.

Once a positive (false or otherwise) is received for some of these conditions, breastfeeding must be stopped.

Then further testing is run.

Just search here and you will find moms who stopped breastfeeding for weeks while awaiting results. In many areas it is basically demanded- with CPS to enforce (there was a CPS case in the news about this not so very long ago- wish I remembered enough details to google it...)

That is a "risk" as far as my decision making is concerned. I am not trying to convince anyone on this topic. I know I'm an outlier on this topic and I'm okay with that









OP asked for why people made this decision- what factors were a part of it- I answered.









-Angela


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *Bluegoat* 
I don't understand how your BF relationship would be ruined, since you would not stop BF until you had an actual positive test?

The suggestion is to stop breastfeeding at the positive screen. In some areas this is enforced by CPS.

-Angela


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *Aridel* 
That's why you need to do your research, so that you can have the info to back you up on continuing to breastfeed until your test results came back. There does need to be more public awareness of what the results mean, but that doesn't mean it's a bad test.

Or, if you have a pushy doctor, use this as one of your interview questions and change doctors.

FWIW I'm not trying to use scare tactics. It is incredibly unlikely that a child will have one of these disorders, since they are so rare. Even if you refuse testing, your child will most likely be fine. But there is no benefit to not having the test (again, as long as you have made sure your doctor and yourself understand what the _screening_ is) and there is a risk. The symptoms that show up with PKU, and some of the other diseases are caused by brain damage that is not reversible. That can be the first sign that you need to get your child checked out.

So it's very, very unlikely, but it's very, very dangerous if you're one of the unlucky ones.

And all of those are valid decision-making factors









I am comfortable with the decision I've made for my two babies. FWIW with dd only 4 things were tested at the time. I reconsidered for ds as they had expanded the screen. I'm comfortable with the decision I made for him in that case.

I will reevaluate again for future babies. I may make the same decision, I may not.

FWIW- in general our family takes a point of view to avoid medical screenings of most types. Most are strongly suggested by the mainstream and have arguments for them. We still decline. It has to do with our overall philosophies about health and western medicine. It has nothing to do with our feelings about what other people choose. If you would like to do the screening, by all means, do it! What is right for one family is often not right for another.

-Angela


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *triscuitsmom* 
But a "false positive" is exactly how it can be treated. I can think of at least one case of a Mom here on MDC and I know of two more on another board who were told that they MUST stop breastfeeding when they were flagged positive. The Mom here got her daughter back on the breast I believe but the other two did not (one was upset about it and pumped, the other one let it go more easily and didn't persue it after the further testing came back). All three did not have the disease they were screened positive for.

This is coming from someone who had the screen done. And will again. But I see both sides and I strongly considered not doing it. It's not as black and white as some people make it seem.

Breastfeeding a baby who *may* have a *rare* disease could result in drastic life long negative consequences for the baby. Not breastfeeding a baby who *may not* have that *rare* disease could result in drastic life long negative consequences for the baby. There are choices to be made but it's not cut and dried.

Thank you for articulating that









-Angela


----------



## midwestmeg (Jul 10, 2005)

Quote:


Originally Posted by *alegna* 
And all of those are valid decision-making factors









I am comfortable with the decision I've made for my two babies. FWIW with dd only 4 things were tested at the time. I reconsidered for ds as they had expanded the screen. I'm comfortable with the decision I made for him in that case.

I will reevaluate again for future babies. I may make the same decision, I may not.

FWIW- in general our family takes a point of view to avoid medical screenings of most types. Most are strongly suggested by the mainstream and have arguments for them. We still decline. It has to do with our overall philosophies about health and western medicine. It has nothing to do with our feelings about what other people choose. If you would like to do the screening, by all means, do it! What is right for one family is often not right for another.

-Angela
















I agree and just for the record I think Angela is stating this in a very gentle way.







I don't think she is trying to scare anyone, she's just sharing her personal experience. I have read lots of Angela's 42,000+ posts and one thing I've learned is that she is usually just being very direct.

Okay, back to lurking and thanks for a good discussion on the PKU. FTR, I decline most everything but I usually do the PKU... although after reading this I am going to go back and learn more about the proper protocol and time frame for most accurate testing.







Thanks for the info.

Also, having watched medical choices versus parental choices (I live in MN and watched the Daniel Houser case pretty closely) I don't doubt that bfing could be stopped by court order if there was a medical issue. Courts almost always rule in favor of medical treatment for minors over the right to parental choice.







Just my personal feeling...


----------



## AlexisT (May 6, 2007)

Quote:


Originally Posted by *alegna* 
The suggestion is to stop breastfeeding at the positive screen. In some areas this is enforced by CPS.

-Angela

The AAFP explicitly says NOT to stop breastfeeding:
http://www.aafp.org/afp/991001ap/1462.html

My understanding is that for PKU specifically, PKU formula is not suitable for a non-PKU baby, and that they actually use a mixture of breastfeeding and formula for PKU babies anyway (exact balance is determined by blood tests for Phe levels).


----------



## lalaland42 (Mar 12, 2006)

I've been doing more researching when I should be packing...

It seems like with PKU, the recommendation is to keep breastfeeding where with galactosemia, the recommendation is to switch to a special formula immediately. The difference between the two is that PKU usually does not present with any symptoms until a little later while galactosemia usually does. It seems reasonable to me that when a positive screen test is returned for galactosemia with _the absence of symptoms_ to remain breastfeeding while a more sensitive test is run. It does not seem reasonable to throw out all tests just because some doctors tell you to stop bf-ing. Not to mention, people seem to be doing it on an idealogical standpoint rather than a practical one.

If you _know_ that you need a more sensitive test to be run and your child has no symptoms or that breastfeeding while waiting for PKU test results is OK, you are not "one of those women" who will stop bf-ing because they were told the wrong thing. So why, in your personal case, would you forgo the screen?

FWIW, I did the triple screen test with DD and it came back as an elevated risk for DS. At that point I could have had an amnio but I decided against it because there was nothing I would have changed by the results. That is just not the case with a metabolic disorder. With this baby I decided not to do the quad screen test because, again, I wouldn't do anything differently if the baby has DS.

I am glad I know the protocol for bf-ing with a + screen test for the metabolic disorders but on the rare chance that the baby has one, I am not going to risk brain damage or death absent a danger TO MY BABY. Me having to suck it up and argue with medical professionals doesn't count as a danger to my child in my mind.


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *AlexisT* 
The AAFP explicitly says NOT to stop breastfeeding:
http://www.aafp.org/afp/991001ap/1462.html

My understanding is that for PKU specifically, PKU formula is not suitable for a non-PKU baby, and that they actually use a mixture of breastfeeding and formula for PKU babies anyway (exact balance is determined by blood tests for Phe levels).

Excellent to know! The past few cases where I have seen this happen it was galactosemia not PKU, but good to know, thanks!

-Angela


----------



## isabchi (Sep 14, 2006)

Quote:


Originally Posted by *alegna* 
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

Our second baby, who born at home, came back positive for Galactosemia twice. Actually, what happened was that they screening the same sample twice, and the second result came back in between they tested the second sample. Our LO was almost two week old. I cry for 24 hours thinking that can't possible!!. I was cry because, they going to tell me that I can't nurse my baby, and all the issues that coming after that.

Thankfully, Every ended in just an error. Scary moment!!


----------



## paxye (Mar 31, 2005)

We don't do the heel prick test but we do do the Urine test at 21 days... the results are more precise without the invasive test. It is done at home by putting a paper pad in a diaper (or catching a pee) and the parents send the test in...

I am not sure where else it is available though...

Quote:

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


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *paxye* 
We don't do the heel prick test but we do do the Urine test at 21 days... the results are more precise without the invasive test. It is done at home by putting a paper pad in a diaper (or catching a pee) and the parents send the test in...

I am not sure where else it is available though...

http://atlasgeneticsoncology.org/Edu...ID30056ES.html

Fascinating. Never heard of this before. hmmm....

off to read.

-Angela


----------



## paxye (Mar 31, 2005)

Quote:


Originally Posted by *Astraia* 
really? where would I find information on this (without telling my dr I plan to UC)?

you can do the urine test at 21 days instead of the blood test... the results are better anyhow and it is easier to get your hands on a test....


----------



## wanderinggypsy (Jul 26, 2005)

My thoughts on false positives and the breastfeeding relationship:

When my two year old daughter was born she screened false positive for isovaleric acidemia. If in fact she had that condition, continued breastfeeding would not have been in her best interest.

HOWEVER, our geneticist, being keenly aware of both the benefits to the vast majority of babies of BREASTFEEDING, and of course the high incidence of false positive screens, recommended that we continue to BF while we waited for the more conclusive test results to come back, and that as a precaution we be on the lookout for certain 'signs and symptoms', thereby treating based on risk factors.

We kept on nursing, two weeks passed, the tests came back negative, my dd is now happily nursing along with her one week old brother.

While other doctors may be more radical/extreme, in our case a false positive certainly did not result in a lost breastfeeding relationship.


----------



## siennasmom (Mar 14, 2006)

Quote:


Originally Posted by *alegna* 
Even the state run sites discussing the newborn screen use the phrase false positive. I'm not sure what the objection is to it. It is a correctly used term in this context.

Not true. One of my kids needed further testing after the screening for one of the metabolic disorders. I can't remember which one. What my doctor told me was that it was unlikely that he had whatever the disease was, but that we needed to do a more detailed test. She never mentioned stopping breastfeeding and honestly it never occurred to me that it might be a possibility. We did the next test and he didn't have whatever it was. That wasn't a false positive. A false positive would be if he had the detailed test and it came back positive, but he didn't have the disease. But that's not what happened.


----------



## Astraia (Jan 1, 2009)

Quote:


Originally Posted by *paxye* 
you can do the urine test at 21 days instead of the blood test... the results are better anyhow and it is easier to get your hands on a test....


I like having you around


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *siennasmom* 
That wasn't a false positive. A false positive would be if he had the detailed test and it came back positive, but he didn't have the disease. But that's not what happened.

False positive is an accurate term for screening. Here are some sites where it is used as such:

http://cme.medscape.com/viewarticle/572605

http://www.eurekalert.org/pub_releas...-nsc060106.php

http://kidshealth.org/parent/system/...ng_tests.html#

http://archpedi.ama-assn.org/cgi/reprint/154/7/714.pdf

http://www.cbsnews.com/stories/2006/...n1691148.shtml

http://mostgene.org/gd/gdvol15f.htm

-Angela


----------



## siennasmom (Mar 14, 2006)

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.


----------



## savithny (Oct 23, 2005)

Quote:


Originally Posted by *alegna* 
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.


----------



## savithny (Oct 23, 2005)

Quote:


Originally Posted by *alegna* 
False positive is an accurate term for screening. Here are some sites where it is used as such:

http://cme.medscape.com/viewarticle/572605

http://www.eurekalert.org/pub_releas...-nsc060106.php

http://kidshealth.org/parent/system/...ng_tests.html#

http://archpedi.ama-assn.org/cgi/reprint/154/7/714.pdf

http://www.cbsnews.com/stories/2006/...n1691148.shtml

http://mostgene.org/gd/gdvol15f.htm

-Angela

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.


----------



## mwherbs (Oct 24, 2004)

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/


----------



## ann_of_loxley (Sep 21, 2007)

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!!!


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by *savithny* 
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* 
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


----------



## *MamaJen* (Apr 24, 2007)

Quote:


Originally Posted by *ann_of_loxley* 
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.


----------



## candipooh (Jun 22, 2004)

Quote:


Originally Posted by *alegna* 
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.


----------



## 98741 (May 17, 2006)

Quote:


Originally Posted by *dnr3301* 
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.


----------



## j10k (Dec 11, 2008)

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.


----------



## mwherbs (Oct 24, 2004)

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...


----------



## smeep (May 12, 2006)

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.


----------



## poiyt (Jul 6, 2008)

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)...


----------



## Sandstress (Sep 21, 2006)

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.


----------



## Lula's Mom (Oct 29, 2003)

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.


----------



## *MamaJen* (Apr 24, 2007)

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).


----------



## alegna (Jan 14, 2003)

Quote:


Originally Posted by **MamaJen** 
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


----------



## TCMoulton (Oct 30, 2003)

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.


----------



## graceomalley (Dec 8, 2006)

Quote:


Originally Posted by *ann_of_loxley* 
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?


----------



## Karry (Apr 10, 2002)

Quote:


Originally Posted by *alegna* 
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.


----------



## an_aurora (Jun 2, 2006)

All three of my babies (one hospital birth and 2 homebirths) have had the test, but if DS had required a hospital birth, I would have declined the routine metabolic screen because this hospital's policy is that babies must have the Vit K shot if they get the heel prick.


----------



## lalaland42 (Mar 12, 2006)

So it seems to me that the real problem with the newborn metabolic screening is with the test for Galactosemia and not the 11ty billion other metabolic disorders that don't require cessation of bf-ing. Right?

IANAD but I was reading up on Galactosemia and it seems that there are 2 types of the disease (and being a carrier since it is recessive). There is classical Galactosemia where there are pretty severe symptoms at birth and Duarte Galactosemia that is more mild with not obvious symptoms from birth. I'd think if you had symptoms from birth AND the screen came back + for Galactosemia, the wise thing to do is stop bf-ing.

From this page on Duarte Galactosemia:

Quote:

Babies who are breastfed and have no symptoms (i.e., - 1 - failure to thrive) and normal laboratory results are allowed to continue breastfeeding but are followed more frequently in the metabolic clinic and with more frequent laboratory tests to monitor galactose levels than those babies who are on soy formula.
http://www.dhss.mo.gov/Genetics/Talk...actosemia.html

So wouldn't it stand to reason that if the baby didn't have symptoms and wasn't actually diagnosed (only had the + screen), then cessation of bf-ing isn't mandatory?


----------



## catballou24 (Mar 18, 2003)

Another message from your friendly neighborhood moderator.

This thread will be closed to further comments due to several UAV's going on within the thread. If asked, please edit your posts where necessary before I lock the thread. Thank you for understanding.


----------



## catballou24 (Mar 18, 2003)

I am locking this thread and removing any UAV posts. Since the thread is now locked, you will not be able to edit posts. Please remember the UA and MDC policies when posting in the future. Thanks!


----------

