PKU how to get out of it? Advice

[VeganEmma]

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

[Baby_Cakes]

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.

[springbabes]

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.

[coyotemist]

Originally Posted by springbabes 

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.

[VeganEmma]

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 

[dayiscoming2006]

Originally Posted by VeganEmma 

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
 

[rhiandmoi]

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.

[love4bob]

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.
 

Originally Posted by rhiandmoi 

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.

[rhiandmoi]

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.

[greenhands]

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. 

[VeganEmma]

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!

[sosurreal09]

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...

[LISSA~K]

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...

[homebirthing]

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!!

[sosurreal09]

Originally Posted by homebirthing 

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?
 

[GatorNNP]

 

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. 

[changingseasons]

Originally Posted by sosurreal09 

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.)

[AutumnAir]

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.  

[AutumnAir]

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.

[homebirthing]

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.