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PKU how to get out of it? Advice - Page 2

post #21 of 37

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

post #22 of 37

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.


post #23 of 37

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. 

post #24 of 37

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.

post #25 of 37

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.

post #26 of 37

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.

post #27 of 37

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 .

post #28 of 37
Thread Starter 

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!

post #29 of 37
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.)
post #30 of 37
Originally Posted by NewSolarMomma View Post
 (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.

post #31 of 37
Originally Posted by dayiscoming2006 View Post

I think the government would have a lot to gain from keeping the dna and supposedly thrown out placentas. Just saying.

Like what exactly? Just out of sheer curiosity... H


Honestly, I think that mega-corporations (pharma, tech, etc.) would have more to gain and be far more organized in collecting such information if it were being collected (which I'm not saying it is or isn't either way...). But seriously, have you ever worked for the US government? It's one of the most chaotic and disorganized organizations ever. LOL


This is getting really, really off topic though... is there a conspiracy thread somewhere on MDC? ROTFLMAO.gif

post #32 of 37

OT- on keeping DNA it depends on your state.  There have been a couple of lawsuits here in TX for just that.  In fact they were using the blood samples for research as well without consent.  



post #33 of 37
post #34 of 37

Very interesting, dayiscoming2006... thanks! I suppose if I thought it would be better for my family, we could just live off the grid entirely, but I guess it's always a risk vs. benefits question... and it all requires an educated guess into the future. Interesting reading though... I also researched my state and the details therein regarding screening. I don't know that there's much I can (or realistically have time) to do about it, except perhaps have an UC, which I'm just simply not brave enough for. Kudos to you mamas who are! I'll be lucky if I get to have a HB. As for the PKU, it's part of the newborn metabolic screen that's collected and stored by our state, so I doubt I'd be able to get out of it, even if I wanted to. It sounds brutal and I'm not happy about it. I'll have to think on this topic a bit more before making any decisions. Thanks for adding to the list of things to worry about! Welcome to parenthood, eh? LOL

post #35 of 37

I talked with my midwife about not doing the test with my last baby.  She hadn't heard of the new law where they keep your baby's dna for 21years (in Washington).  She found the info and was slightly disturbed, but still wanted it done.  She found a form for me that I could send in to the state and ask for them to destroy the DNA after the test.  I didn't bother with that form though, but it is available as an option.

post #36 of 37

I don't have too much to add to the discussion really, other than I did discover with my last birth that the test does not have to be done by heal stick anymore, that this is an outdated practice, and that a normal blood draw technique can be done instead and still have accurate results, with much less discomfort to the baby.   With my last birth, my ped told me to make it clear to the lab that I would not allow a heel stick, and wrote it in very large letters on my lab req as well.  My daughter nursed comfortably as the blood was collected for her testing.


As to the OP, the County Health Dept. in my county (Kern) in California was going to refuse to issue the birth certificate without the PKU info; this wasn't a problem for me because I have no problems with the testing when performed as stated above, I know it varies from state to state, as well as within the different counties within that state... I hope you are able to find information for a solution that works for you. :)

post #37 of 37
We will be doing the metabolic screen at a private lab rather than through the state. This complies with the letter of the law but also allows us to add additional screens which we want and get the sample destroyed immediately rather than put on file with the state. OP I share this in case a private lab would be another option for you.

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