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PKU test?

post #1 of 42
Thread Starter 

Just looking for a range of perspectives. Why did you or didn't you choose to have the PKU screen done? Any regrets? TIA!

post #2 of 42

I had it done both times and will again. In fact, with my home birth I went out of my way to find a lab that would do a more thorough test than the local hospital would have.  I don't find it invasive and it doesn't introduce anything scary into the baby's body so I felt the benefits outweighed any perceived risks.

 

I also wanted to make sure it had been done when the baby was 2 days old as opposed to a few hours.

 

*there are no spoilers. I don't know how those got there and I don't know how to get rid of them. Sorry.

 

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I also wanted to make sure it had been done when the baby was 2 days old as opposed to a few hours.

 

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I also wanted to make sure it had been done when the baby was 2 days old as opposed to a few hours.

 

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post #3 of 42

I would never consider not doing it.  The conditions it screens for (it isn't just PKU anymore, I think every state mandates 4 and most screen for more) are very, very serious, and also treatable if caught early enough. 

post #4 of 42

I also did it...it's not an option in my state, you have to anyway

post #5 of 42

PKU isn't a vaccine.

 

Most states screen for way more than just that.  We had it done with all 3. 

post #6 of 42

agree with PPs... PKU does not inject anything into the body.  It is a heel prick.  Then they wipe the blood on some dots on a test card and send it off to screen the blood.  Yes, it is uncomfortable for the baby, but aside from that there really isn't risk of harm.  It screens for multiple disorders, that are easy to treat if caught early early, but really difficult to cope with if they go undetected.

 

To help your baby cope with the pain of the heel prick, you can nurse while they are doing the test.  If your nurse tells you she can't do that, ask for a different nurse (I wish I had done that)

post #7 of 42
We got it. They screen for a whole range of disorders here. Most of them are extremely serious if not caught, but manageable if you catch them early enough. It doesn't put anything into baby's body. The heel stick can be hard to watch-- sometimes it takes them awhile to get enough blood out (especially if baby's just had Vitamin K). But you can nurse right through the whole thing-- wait until late in the feed, when baby's dropping off to sleep, and then have them do it then. My kids all slept right through it. If they tell you they can't do it that way, tell them nonsense-- of course they can-- and ask them to talk to your doctor.
post #8 of 42

I had my midwife do it last time (I've done it with all three).  It's easy, not dangerous and I wouldn't be able to live with myself if I didn't catch something that would have been so easy to find out.  If they use a warm compress first and you nurse through it your baby may not even notice.

post #9 of 42

Wouldn't even consider not doing it- such a simple thing that can detect so  many serious preventable diseases. And we don't do ANY vaxes or vitamin k.

post #10 of 42
Quote:
Originally Posted by PoppyMama View Post

I had my midwife do it last time (I've done it with all three).  It's easy, not dangerous and I wouldn't be able to live with myself if I didn't catch something that would have been so easy to find out.  If they use a warm compress first and you nurse through it your baby may not even notice.


We've done it each time, too. So easy and we don't vax or anything. I can't imagine not doing it even though none of the disorders are in our families at all.
post #11 of 42

We did it, but we did it a few days after birth @ her first doctor's visit - we will do it for any more children we have. We don't vax, but this is just a few seconds of discomfort for them and can save a lot of pain later if they have anything in the screening that can be dealt with early.

post #12 of 42

PKU test does not inject anything in to your child. The only people who did not do it who would regret it would be the people whose children had one of the treatable, yet deadly when not treated, disorders. Asking if you regretted it is like asking someone who never uses a seat belt or car seat if they regret it, when their child never died in an accident.

 

The diseases the PKU tests test for are ones that you likely won't know your child has, until your child is dead or close to. I will always give my children those tests. I am a non vaxer. I have gone out of my way with each of my children ever since my first to make sure they had the extended PKU test. 

post #13 of 42

I did the PKU all 4 times.  When I was working I met a family whose daugher was diagnosed with the condition at birth and was saved from brain damage -- she was a happy healthy teenager.  I have ZERO issues screening my child for metobolic disorders.

post #14 of 42

Since this isn't vaccine related I'm going to move the thread over to B&B.

post #15 of 42

I have a degree in genetics, so as course material learned about some of the disorders that it tests for. all are easily dealt with if caught in the first couple of weeks of life, but after that if they are un-treated can cause irreversible brain damage, severe physical issues, or death. I'm perfectly willing to let my newborn go through a few seconds of pain and discomfort in order to know that all is well. it was way easier than the blood draw for having her bili levels tested later. 

post #16 of 42

I would never consider not doing the PKU test. It has virtually no risk and the potential payoffs are enormous. A couple seconds of discomfort versus a lifetime of profound mental and physical disability? It's a no-brainer.

post #17 of 42

Just to contribute to the range of perspectives that you're looking for...

 

We did the newborn screen (which includes tests for PKU, and for many other conditions) for our first child, but not for the second.  The risk of having any of these diseases is very low, most of them are so rare that I've never even heard of them before.

 

But also, I don't like how the state Health Department handles the whole thing.  Parents receive a pamphlet about newborn screening, which extols the benefits, while mentioning nothing about risks.  The Health Department keeps all the screening blood samples for research; this fact is buried in the middle of the fourth page of the pamphlet, in a section about something else.  The few parents that know about the opt-out, and want to do so, have to fill out a propaganda-laden form.  If you opt out in my state, all they do is promise is that they'll destroy the blood sample WITHIN TWO YEARS.  The hospital lab people had a hard time finding the opt-out form, because no one ever asks for it.  The Health Department is required by law to notify the family when the baby's blood sample is destroyed.  We never received anything of the sort.  If we opt out of newborn screening entirely, there's another form to fill out, written in the same vein as the "bad parent" vaccination forms that some doctors hand out.  Transparency and accountability are severely lacking in this process--people have had to file lawsuits just to get the Health Department to follow the letter of the law.  Much more on this issue can be found via Citizens United for Health Freedom.  State policies on newborn screening vary, so you should check on what your state does.

 

I am among the people who suspect that newborn screening blood samples are going to be used (if not now, then later) to build a DNA database for the entire population.  I think the risk of this happening within my lifetime is (conservatively) over 80%. 

 

Even if you're not so paranoid, if the screening test gives a positive result for anything, the Health Department will be all but breaking down your door to make sure that your baby gets the recommended treatment.  The problem is that a positive result could easily be a false positive, and until the test results can be confirmed, your baby is basically under their control.  

 

So the test is not entirely risk-free, by any means.

post #18 of 42
Quote:
Originally Posted by Vaske View Post

Just to contribute to the range of perspectives that you're looking for...

 

We did the newborn screen (which includes tests for PKU, and for many other conditions) for our first child, but not for the second.  The risk of having any of these diseases is very low, most of them are so rare that I've never even heard of them before.

 

But also, I don't like how the state Health Department handles the whole thing.  Parents receive a pamphlet about newborn screening, which extols the benefits, while mentioning nothing about risks.  The Health Department keeps all the screening blood samples for research; this fact is buried in the middle of the fourth page of the pamphlet, in a section about something else.  The few parents that know about the opt-out, and want to do so, have to fill out a propaganda-laden form.  If you opt out in my state, all they do is promise is that they'll destroy the blood sample WITHIN TWO YEARS.  The hospital lab people had a hard time finding the opt-out form, because no one ever asks for it.  The Health Department is required by law to notify the family when the baby's blood sample is destroyed.  We never received anything of the sort.  If we opt out of newborn screening entirely, there's another form to fill out, written in the same vein as the "bad parent" vaccination forms that some doctors hand out.  Transparency and accountability are severely lacking in this process--people have had to file lawsuits just to get the Health Department to follow the letter of the law.  Much more on this issue can be found via Citizens United for Health Freedom.  State policies on newborn screening vary, so you should check on what your state does.

 

I am among the people who suspect that newborn screening blood samples are going to be used (if not now, then later) to build a DNA database for the entire population.  I think the risk of this happening within my lifetime is (conservatively) over 80%. 

 

Even if you're not so paranoid, if the screening test gives a positive result for anything, the Health Department will be all but breaking down your door to make sure that your baby gets the recommended treatment.  The problem is that a positive result could easily be a false positive, and until the test results can be confirmed, your baby is basically under their control.  

 

So the test is not entirely risk-free, by any means.


I was not aware that this was such a controversial issue. So first of all, thank you for bringing my attention to it. I've just spent a half-hour poking around googling about this, and I've learned a lot. I am still, right now, convinced that if I were pregnant again, my baby would be getting the screening. But I can see that there are valid reasons for individuals to be suspicious of the screening programs. I'm wondering-- if it possible to have baby screened privately, outside the "mandatory" public program? I'm supportive of research efforts, but I also believe in informed consent. I don't doubt that the Health Departments have the best interests of babies at heart, when they try to track down babies with positive results-- but I can see how it would seem to be an encroachment on privacy, too. So the issue seems very complex.
post #19 of 42

Yes, you can have the screening done privately.  I believe it costs about two hundred dollars.

 

I found some stats for my state this morning...looks like there is roughly one confirmed case of PKU for every 10,000 births.

post #20 of 42

Even if the occurrence of PKU is 1 per 10,000, they also test for about 20 other metabolic disorders in the newborn screening, so the total risk is going to be higher than that. It's frequently referred to as "the PKU test" but there are a lot of disorders in the screening.

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