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Old 12-07-2010, 06:40 AM - Thread Starter
 
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Just looking for a range of perspectives. Why did you or didn't you choose to have the PKU screen done? Any regrets? TIA!

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Old 12-07-2010, 06:54 AM
 
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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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Old 12-07-2010, 06:55 AM
 
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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. 

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Old 12-07-2010, 08:29 AM
 
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I also did it...it's not an option in my state, you have to anyway


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Old 12-07-2010, 03:58 PM
 
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PKU isn't a vaccine.

 

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


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Old 12-08-2010, 03:40 PM
 
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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)


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Old 12-08-2010, 05:00 PM
 
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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.


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Old 12-09-2010, 03:56 PM
 
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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.

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Old 12-09-2010, 04:02 PM
 
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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.


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Old 12-09-2010, 04:12 PM
 
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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.

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Old 12-10-2010, 08:32 PM
 
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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.


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Old 12-11-2010, 04:18 PM
 
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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. 

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Old 12-12-2010, 06:34 AM
 
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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.


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Old 12-12-2010, 08:25 AM
 
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Since this isn't vaccine related I'm going to move the thread over to B&B.

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Old 12-12-2010, 12:13 PM
 
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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. 


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Old 12-12-2010, 08:51 PM
 
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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.


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Old 12-13-2010, 08:12 AM
 
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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.

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Old 12-13-2010, 10:25 AM
 
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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.

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Old 12-13-2010, 03:26 PM
 
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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.

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Old 12-13-2010, 03:43 PM
 
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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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Old 12-13-2010, 03:53 PM
 
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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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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.


Here in NJ, they test for 54 disorders. Some of them are extremely rare, and some of them more common and well-known-- for example, sickle cell anemia and cystic fibrosis. I also found a stated policy that said that here in NJ, samples are kept for 23 years, and are only used for other purposes with either parental consent or a court order. One wonders why they're keeping them, of course-- but I still think I'd get the screen again.

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Old 12-14-2010, 03:28 AM
 
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Where I live, when one or more tests on the Newborn Screen comes back positive, NO ONE tries to force families into treatment for the disease.  False positives are not that common, but when they occur the FIRST thing requested is a re-test.  If your child should test positive for anything on the Newborn Screen, just be sure to request a retest before accepting treatment--unless of course, your baby is already symptomatic.  PKU disease, Galactocemia, these are early-onset and you would be seeing symptoms not so long after birth.  Many of the other disorders don't manifest symptomatically until weeks, months, or even more than a year later.  I don't know all the names, but for instance there is a fatty-acid disorder that would not tend to manifest until your baby is sleeping through the night, and therefore fasting for an extended period.  And so forth.

 

Go to March of Dimes website, search Newborn Screening and you'll learn lots more!

 

As for blood samples and Big Brother having all of our DNA...well I can't really think too much about that or have any paranoia for the possibility.  Not that I doubt it!  Just that in this era, yeah, Big Brother is watching--with ever-more-secret and sophisticated methods.  I decided it's just a norm of our lives and pointless to worry.  No such thing as privacy anymore, and if they want your DNA they're going to get it one way or another.  But that's just me.

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Old 12-14-2010, 09:11 AM
 
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I had a relative that had a baby that tested positive for PKU disease, which was confirmed.

 

Nobody was breaking down the door to monitor the treatment received, but they did provide a lot of education on how to handle to disease and well as advice on notifying family members.

 

Because it is inherited disease, a couple of my relatives also decided to get genetic testing to see if they were a carrier. You have to get the gene from both parents to be affected, so families can carry the gene for many generations and not know until someone has a baby with another carrier and they both pass on the gene. Luckily, my father was not a carrier so he didn't pass it on to me.

 

Overall I think the whole experience was very positive and a new baby was saved from a lifetime of horrible and permanent mental and physical damage because it was caught early.

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Old 12-14-2010, 11:31 AM
 
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We did the PKU for each child, even our homebirth baby. We will do it for all children. In our state they test for over 50 different things, and I did know someone who had a child who had a baby that came back positive for one of those things.


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Old 12-14-2010, 12:06 PM
 
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As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  


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Old 12-15-2010, 02:22 PM
 
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Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 

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Old 12-15-2010, 04:33 PM
 
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I do it but wait a few days. I did it at the pedi office with DD2 and my MW came out and did it with DS.


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Old 12-16-2010, 06:07 AM
 
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As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  


It sounds to me like you have been using a far less effective method of blood collection than you could be.  Let me suggest the following, so you can prevent a lot of baby distress and have an easier time with the collection yourself:

 

1. Use a neatnik or tenderfoot lancet--these are small blades, not pin-hole type.  The blade mades a shallow slice instead of a tiny hole--a slightly larger wound that bleeds more initially.  The babies clot pretty quickly nonetheless once you're done.  These blade-lancets cost only a few dollars and are well worth it all around!

 

2.  Warm the baby's foot/lower leg thoroughly before using the blade-lancet.  A heating pad is a great tool for this--just fold the heating pad around the baby's leg for several minutes while mom holds baby comfortably.  A warm leg will make the blood flow more freely, no need whatsoever to cause the baby more distress just to get the blood pumping well.

 

3.  Mom should hold the baby upright against her shoulder (like when burping a baby, facing mom's shoulder).  This way you will also have gravity's help with sufficient blood flow--and baby will be in mom's arms in a comfortable position, also reducing baby's distress from the small pain of the lancet.

 

4. Have your stuff all ready, so that the instant you make the cut, you are ready to catch blood.

 

Since using this method, very few babies cry--and those that do, cry very little and generally are settled before the blood is done being collected.  Even those that cry a bit all through, do not cry nearly as hard, and are soon settled the second you stop messing with their leg.  All that is needed is several drops of blood--this can collected within 30-60 seconds, depending on how freely the baby bleeds.  It is only rarely necessary to gently milk downward on baby's calf to promote a little more flow; only rarely necessary to use an alcohol wipe over the cut to interfere with clotting and thus promote a little more flow.

 

For the parents: insist that your provider use a blade lancet, not a point.  You can buy one with your birth supplies if you are having a homebirth.  Hold your baby during the process, make sure your baby's leg is nice and warm.  If your providers don't already do the things suggested above, then tell them this info first so they understand what you want---those who are unaware of this method may be quite pleasantly surprised to learn something new that prevents baby's distress during the collection.

 

Having once used the point-type heel stick--and not warming, the leg either--I can tell you, some babies cried so hard!  I hated that I was distressing them and of course babies and parents weren't too happy either.  Much nicer for everyone to use a method that causes less pain, requires less prodding/milking of the foot to get the blood.  The point-type stickers are great when you only need a drop or 3 of blood....but the blade lancets, used on a warmed leg, are by far superior when you need more like 12-15 drops for the collection card.

 

ETA:  The test is best done at about 3-4 days pp, when the milk is in or starting to come in.  Earlier testing may not be conclusive and will just need to be done again.  It is done at 24-48hrs in the hospital MAINLY because that is when they have you/baby on hand--and the possibility of false positives is why they may want the test repeated a 2nd time later.  Also--if for any reason the screening is not done by 3-5 days pp, then it's best to wait until 2wks, IMO.  That is mainly because baby's clotting factors have reached their peak at 8days; it can be much harder to get a good blood flow at/around that time.  If you wait til 2wks, then clotting factors have backed off a bit and testing is easier.  Of course, if baby seems symptomatic (of anything, really) then it's best to get med eval ASAP, no matter what the baby's age.
 

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Old 12-16-2010, 06:46 AM
 
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Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 


While I understand that interrupting breastfeeding is far, far from the ideal situation, especially when it turned out to be unnecessary in the end-- I would rather play it safe in that situation while I waited for more tests to confirm the result. Screenings are not perfect-- certainly we get false positives sometimes. But would it be better to allow babies with these conditions to go undiagnosed long enough for permanent damage to be done?

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Old 12-16-2010, 07:26 AM
 
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Originally Posted by Vaske View Post

Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 




While I understand that interrupting breastfeeding is far, far from the ideal situation, especially when it turned out to be unnecessary in the end-- I would rather play it safe in that situation while I waited for more tests to confirm the result. Screenings are not perfect-- certainly we get false positives sometimes. But would it be better to allow babies with these conditions to go undiagnosed long enough for permanent damage to be done?



ITA.  Short term discomfort is worth it when possibly dealing with a such a serious issue. 

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