Reason to refuse PKU test? - Page 3

[Aridel]

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]

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]

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.

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[alegna]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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...

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]

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]

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]

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]

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]

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]

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