PKU how to get out of it? Advice - Mothering Forums
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#1 of 37 Old 01-01-2011, 12:12 PM - Thread Starter
 
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I need advice and information on how to NOT get the PKU test done on my next child. I refused the test in the hospital with my son (california) and got CPS called on me. What are my rights? Is the test mandatory. I am planning my UC and if I take my child to the pedi or naturopath are they going to push the test on me? What can I say to get out of it? I will be UCing in Nevada. 

 

Thanks,

Emily

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#2 of 37 Old 01-01-2011, 12:17 PM
 
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Hmm, what are your reasons for not wanting it?  Are you just trying to avoid the PKU test or the entire newborn metabolic screening?

If your child does have one of these rare life threatening metabolic disorders, wouldn't you want to know early?

My DD ('08) was flagged for galactosemia after this screening.  She is a carrier for the Duarte variant.  However, if she were a full galactosemic, she wouldn't have been able to have breastmilk (or many other things).  If it weren't for the screening, we never would have known.

Please, I don't mean any offense.  I just see this as one of the few things "they" do that I agree with.

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#3 of 37 Old 01-01-2011, 12:55 PM
 
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Some of the disorders they test for are extremely common--I personally know 3 familes who had babies with congenital hypothyroisim. I would never skip the PKU for that reason. What reason do you have for not wanting the test?  I have been on MDC a long time and have never heard a compelling reason to forgo the PKU.

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#4 of 37 Old 01-01-2011, 01:29 PM
 
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Originally Posted by springbabes View Post

Some of the disorders they test for are extremely common--I personally know 3 familes who had babies with congenital hypothyroisim. I would never skip the PKU for that reason. What reason do you have for not wanting the test?  I have been on MDC a long time and have never heard a compelling reason to forgo the PKU.



Ditto as springbabes...and I live in a totally different state!  A small dose of cheap drug ensures that these children turn into perfectly normal adults, rather than mentally delayed people who need full support their whole lives.  Sure the test isn't pleasant, but it's over quickly and saves lots of lives.


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#5 of 37 Old 01-01-2011, 01:58 PM - Thread Starter
 
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I did not ask your opinions, though I appreciate them. I realize most people want the PKU or find it necessary. I do not want the test for MY child. If you have advice that could help me I would appreciate it. 

 

Thanks, 

Emily 

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#6 of 37 Old 01-01-2011, 07:09 PM
 
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Originally Posted by VeganEmma View Post

I did not ask your opinions, though I appreciate them. I realize most people want the PKU or find it necessary. I do not want the test for MY child. If you have advice that could help me I would appreciate it. 

 

Thanks, 

Emily 

 

Hmm... I'm not sure how you can get out of it. I might be wrong but I think it is the law that you have the PKU test done. I remember asking something like this a couple year ago with my last pregnancy and I believe that is the answer I got. I don't know anything else. I can understand why you don't want the PKU test done though. You shouldn't have to do anything to your baby that you don't want to. 

 

I'll probably have it done myself as I don't want to get in any trouble about it. I wouldn't want to risk my family over it.There are other things I would stand firmly on though. I think try searching the net for PKU exemption forms for your state. I doubt they exist but, like I said, I might be wrong. HTH
 


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#7 of 37 Old 01-01-2011, 07:50 PM
 
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If you are having a UC, who exactly is going to be forcing you to do a PKU test? You won't have a health care provider and neither a hcp nor a PKU test is required to file for a birth certificate. Going to a doctor post birth, they will probably not even ask if you have had it done.

So, in short, I think you are worried about nothing.

BUT, I agree with the pp, I have never heard a good reason for skipping the newborn screening. I could understand delaying for 3 or so days, but not skipping it. It provides so much useful information that can make real differences in the quality and length of life for those affected by the screened disorders.
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#8 of 37 Old 01-01-2011, 07:57 PM
 
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I had a home birth, and my midwife didn't do PKU tests, I had to have it done later at the ped. I didn't get it done right away because we moved when DD2 was 2 weeks old to a different state. I guess the state gets your info when you register the out of hospital birth and get the birth certificate, and it is the law that you have to have it done. I don't know why it is, or how to get out of it. I didn't oppose it. I got many letters telling me that I needed to have it done. I also got phone calls telling me to get it done. I was planning on it, I just hadn't had a chance yet with moving and all. I ended up getting it done for free at the health department when she was 1 month old.
 

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If you are having a UC, who exactly is going to be forcing you to do a PKU test? You won't have a health care provider and neither a hcp nor a PKU test is required to file for a birth certificate. Going to a doctor post birth, they will probably not even ask if you have had it done.

So, in short, I think you are worried about nothing.

BUT, I agree with the pp, I have never heard a good reason for skipping the newborn screening. I could understand delaying for 3 or so days, but not skipping it. It provides so much useful information that can make real differences in the quality and length of life for those affected by the screened disorders.



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#9 of 37 Old 01-01-2011, 08:21 PM
 
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Yes. The health department will send you a billion letters asking you to do it, but there is no actual consequence if you don't do it, other than the constant annoyance of being asked to do it.
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#10 of 37 Old 01-01-2011, 11:21 PM
 
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It depends what state you live in.  Look up the state laws concerning newborn metabolic screening.  You could also call your local health dept. and ask some innocuous questions--but be prepared to hear misinformation.  Do your own research.  As a pp mentioned, there might be a waiver or exemption form you can sign.  Of course your local climate will determine if signing a waiver gets you off the hook as a responsible citizen, or alerts the powers-that-be to your presence. 

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#11 of 37 Old 01-02-2011, 10:37 AM - Thread Starter
 
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thanks ladies. Is there a time frame that they do it in? If I were to miss that window of testing opportunity? I am going to do some more research online. When I gave birth in California they gave me a pamphlet that clearly stated I could decline the test for a religious reasons, but when I told the nurse I refused the test for religious reasons they called CPS on me. I just wanted to see if anyone had any experience with it I appreciate all the feedback thanks!

 

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#12 of 37 Old 01-02-2011, 10:45 AM
 
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IMO you are endangering you're child for no reason...it's just a test it doesn't hurt her (except a little foot prick). I don't think a possibility of death out weighs a foot prick...

 

my DD had hers done at 1 m/o b/c the first test apparently didn't have enough blood. If you are worried about taking her to the Dr so young or something I think you could delay it a bit...

 


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#13 of 37 Old 01-02-2011, 10:58 AM
 
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As the mother of a child with a metabolic disorder, I am always saddened when I hear of people purposely avoiding the newborn screening. Sometimes waiting a few more days, or until the 2 week ped. visit can be dangerous to a child's health. I know you are not seeking opinions but I urge you to reconsider. I never thought it would happen to our family either...

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#14 of 37 Old 01-02-2011, 11:03 AM
 
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WOW!! I can't believe some of these responses!!!  What they test for are very very rare things and the benefits do not outweigh the risks for some people.

 

 

In my state, you just have to sign a waver, although for MANY homebirthing families, nothing is signed. I have five children and only the first was tested and only because I accidently gave birth at the hospital. The rest weren't tested. My midwife gave me everything for the birth certficate and because she did the full newborn exams, we didn't even go in to the pedi until they were much older and actually sick.

 

I wouldn't think that a naturopath would push anything on you although I imagine a ped would. Good luck!!


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#15 of 37 Old 01-02-2011, 11:08 AM
 
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Originally Posted by homebirthing View Post

WOW!! I can't believe some of these responses!!!  What they test for are very very rare things and the benefits do not outweigh the risks for some people.

 

 

In my state, you just have to sign a waver, although for MANY homebirthing families, nothing is signed. I have five children and only the first was tested and only because I accidently gave birth at the hospital. The rest weren't tested. My midwife gave me everything for the birth certficate and because she did the full newborn exams, we didn't even go in to the pedi until they were much older and actually sick.

 

I wouldn't think that a naturopath would push anything on you although I imagine a ped would. Good luck!!

and what are the risks exactly?
 


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#16 of 37 Old 01-02-2011, 11:28 AM
 
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I guess the risk some people are concerned about is the way blood is collected, or the consequence of knowing about a metabolic disorder, such as needing a special diet etc. 

 

Most of the tests on the newborn screen can be accomplished without actually digesting or metabolizing, so you theoretically could send the screen on cord blood. Some would not be picked up. There are other ways to collect the blood, such as a venous draw that would not cause as much injury as a heel prick. The reason there are laws is people view it as a right of the individual child to have a life with full mental capacity, and finding out about metabolic disorders early and treating appropriately, will prevent the loss of cognitive abilities. The most concerning disorders are the ones picked up early if the test is done at 24 hrs from first meal to 2-3 days. 

 

It seems there is some misconception about the treatment always being interruption of breastfeeding. Even with PKU disease some breastfeeding is acceptable as long as the levels are not too high. For a child with metabolic disorder, the byproducts of digesting food can act like poisons disturbing the normal function of the body and mind. Most of us would never poison our own children, if your kid has galactosemia or something similar, that is what allowing the disorder to go undiagnosed or treated would do. 

 

To the OP, I guess many parents are having difficulty what problem you have with the newborn screens, most of them have been prompted by strong advocacy of parents who don't want other people to go through watching their children suffer needlessly. 

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#17 of 37 Old 01-02-2011, 11:35 AM
 
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Quote:
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and what are the risks exactly?
 


I'm curious as well.  If there are risks, I definitely want to be aware of them to weigh my options.

 

Obviously, poking an infant isn't exactly a fun time, but I don't see any risks.  It's not like you're introducing or injecting anything into the infant's body (like vitamin K, eye goop, or vaccines.)


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#18 of 37 Old 01-02-2011, 11:54 AM
 
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This looks like it might have some good information http://www.gentlebirth.org/archives/pku.html

 

I've only skimmed it, but there may be some discussion of the legality in various states.  


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#19 of 37 Old 01-02-2011, 12:00 PM
 
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I believe (though I'm not speaking for the OP here) that some of the concerns with the test are quite a high rate of false positives, which very often lead unnecessarily to the cessation of breastfeeding, plus all the other stress and trauma that come with that, not to mention that it is a very painful procedure for the baby, and has the potential to introduce infection.  

 

The typical time to do it in the US is before hospital discharge, so about 24-48 hours - which is one of the reasons for the false positives.  A test done at 6-8 days (as is normal here in the UK) is much less likely to yield a false positive.


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#20 of 37 Old 01-02-2011, 12:05 PM
 
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People might consider heel lancing (it is not a poke) to be very painful. They often have to squeeze the foot aggressively to get blood out. It can take up to 30 minutes if you have a dehydrated baby.

 

Government keeping the DNA for testing.  There are people who believe the government coerces people to participate in genetic screening and are violating people’s personal privacy. 

 

The high false positive rate on certain tests within the newborn screen.

 

Repeat testing if testing is invalid for being done too soon.

 

 

 

 

I understand that these might not be "risks" for some, and I respect that. However, coming onto a thread where the OP is asking for advice on HER needs and then criticizing her for her decision isn't right.

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#21 of 37 Old 01-02-2011, 01:12 PM
 
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I know , that there is only a certain time frame , where you can do the test , starting at about 24 hours after birth and ending about 72 hours afterwards .

So , if you don´t have it done at that time , it´s too late anyway . However , I hope you realize , that if your child has one of the problems , they test for , you can be in a WHOLE LOT of trouble if you have refused the test ?

Plus , like someone mentioned , it´s a totally different story from Vitamin K and all that other stuff , they put INTO a baby , and to some of that I am opposed to as well , but I know a family , who had not done the test and ended up with a brain-damaged son , who died when he was only five , because he had one of those metabolic disorders , that didn´t get recognised until the damage was already done and they could have prevented all of it with the test and after getting the results , by putting him on a special diet right away .

I personally couldn´t live with myself , if I caused suffering like that to my baby , simply to stick to my principles .

Maybe , that´s just me , but a healthy child is the most important goal , even if I have to go the modern medicine route , and I am definitely very adamant about making informed choices , I don´t believe a doctor is right , simply because they are a doctor and I don´t let people talk me into things , simply because "that´s the way , it´s done"

But not everyting about modern medicine is bad , some things , like early tests and the resulting proper treatment , if necessary , are a blessing


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#22 of 37 Old 01-02-2011, 08:18 PM
 
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So I just did a quick search of the law in CA regarding PKU testing. It seems that it is the only mandatory testing that does not require informed consent. It is listed under California Health & Safety Code 124980. I would suggest that if you prefer not to have PKU testing and also do not wish CPS to be called (an unpleasant experience...) I would recommend you claim religious reasons and have a letter written from your religious leader (if you have one) asserting this in advance of childbirth. I am not certain it makes a difference, but I suppose it's worth a shot. If you're truly concerned about this, I would consult with an attorney who can give you detailed advice. Good luck!


 (f) No testing, except initial screening for phenylketonuria (PKU) and other diseases that may be added to the newborn screening program, shall require mandatory participation, and no testing programs shall require restriction of childbearing, and participation in a testing program shall not be a prerequisite to eligibility for, or receipt of, any other service or assistance from, or to participate in, any other program, except where necessary to determine eligibility for further programs of diagnoses of or therapy for hereditary conditions.


 (h) All participants in programs on hereditary disorders shall be protected from undue physical and mental harm, and except for initial screening for phenylketonuria (PKU) and other diseases that may be added to newborn screening programs, shall be informed of the nature of risks involved in participation in the programs, and those determined to be affected with genetic disease shall be informed of the nature, and where possible the cost, of available therapies or maintenance programs, and shall be informed of the possible benefits and risks associated with these therapies and programs.

 

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#23 of 37 Old 01-02-2011, 09:45 PM
 
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It it not true that you have to do it within 72 hours or so of birth or not at all. In the US yes there is one PKU usually done then and then another one at 1-2 weeks. The reason being is that the first PKU should be done after 24 hours but many babies are discharged before then so another one is done. Some states just now routinely do two tests. There isn't an age limit on it, but after a while it just becomes more of a formality if there isn't health issues occurring.  

   

 

I've just done one on my babies between 3-7 days usually. I could refuse one easily in CO, my babies do go to the pedi for a visit the first week, she asks if I want one or not. I've never said no, it is just about the only testing I do accept but I can tell she wouldn't hassle me if I said no. We have more then your typical doc/patient relationship though, and she ha always trusted and respected my decisions. 


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#24 of 37 Old 01-03-2011, 08:57 AM
 
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I have had 7 UC's and never had the PKU done. I don't take my baby to the ped right away though, in fact some of mine have never seen the ped. I only visit if there is a clear need and do not do well baby visits. Why do a ped visit unless necessary? You can state you had a HB w/ midwife and she handled the PKU. It isn't that big of a deal to get around if you do not want the test, w/o encountering a hassle.


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#25 of 37 Old 01-03-2011, 01:19 PM
 
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I was in Louisiana with my first, who was born at home with a homebirth midwife.  I refused the metabolic screening test, and my midwife actually did not advocate for it either.  There was no problem, I never was contacted by anyone to get the test done.

 

This time I am in Georgia, and I will be getting the metabolic screening test done.  However, there is a religious exemption in the law in GA as well.  I don't know how it would play out if I actually wanted to use it.

 

I sympathize with your position, and I too am a bit surprised at the vehemency of some of the PPs.

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#26 of 37 Old 01-03-2011, 01:20 PM
 
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This is all very interesting to me, so I did a little more research that may be of use to the OP. This article on WebMD: http://www.webmd.com/parenting/baby/phenylketonuria-pku-test says that "A urine PKU test is done on a baby who did not have a blood test and who is older than 6 weeks", so if you can avoid it until then, it may be a decent compromise? This seems like a viable option, especially if you are planning a UC.


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#27 of 37 Old 01-03-2011, 01:29 PM
 
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Well , in Germany it is usually done between the age of 24 to 72 hours , it´s the most accurate then and I trust that . I´m a biologist myself and I wnat to make sure , that I get the most definite result with something as important as my baby´s health . Plus , it´s not really a painful procedure , I watched as they did it on 4 of my kids and they only flinched a little , and even if it was uncomfortable to them , it sure beats feeling the way you do , when you have a metabolic disorder .


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#28 of 37 Old 01-03-2011, 03:04 PM - Thread Starter
 
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Wow thank you all for the responses! I respect all your opinions, and thank you for all the information/advice. I think I may just delay the pedi visit until it is necessary. 

 

Thanks again!

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#29 of 37 Old 01-03-2011, 08:07 PM
 
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You should be fine with a UC. If you have to transfer, tell them your pedi is scheduled to do the test because it's more accurate a few days later.

But I understand the concern. CPS, in CA IS really out of control. From what I have heard, NV is much better. I know most case workers only want to help kids, but all it takes is ONE that doesn't like you, or the way you do things, to take your baby away or start a huge legal hassle. (There have been some seriously egregious cases in San Diego lately that have made my blood boil.)

I don't think the OP's were criticizing to be negative at all, some were honestly concerned, others were curious of the risks. I know this site has a habit of deleting posts that have any dissent, but if you see something that is very dangerous, aren't you morally obligated to say something? (and the government does not keep newborns DNA.)
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#30 of 37 Old 01-04-2011, 07:03 AM
 
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 (and the government does not keep newborns DNA.)


Eh, I'd have to likely disagree with that. I've seen plenty of stuff online that says otherwise. Not guaranteeing anything but, I think the government would have a lot to gain from keeping the dna and supposedly thrown out placentas. Just saying.


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