PKU testing? - Mothering Forums

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#1 of 22 Old 09-15-2008, 12:23 PM - Thread Starter
 
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What is the significance of waiting to do PKU testing until your milk comes in?

Summer: crafty mama to 2 little girls and wife to Bob
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#2 of 22 Old 09-15-2008, 12:53 PM
 
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The baby bleeds easier because he has more fluid volume.

Some people will tell you that the test isn't reliable until the milk comes in, but the lab values for detecting metabolic diseases are adjusted to account for colostrum intake in exclusively breastfed babies.
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#3 of 22 Old 09-15-2008, 03:08 PM
 
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The whole point of the pku is to find out whether or not your baby is able to digest your breast milk properly, waiting til one week is best. Do some research on it though that way you are informed.

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#4 of 22 Old 09-15-2008, 03:20 PM
 
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Originally Posted by nashvillemidwife View Post
Some people will tell you that the test isn't reliable until the milk comes in, but the lab values for detecting metabolic diseases are adjusted to account for colostrum intake in exclusively breastfed babies.
How do they do this when they don't ask how your baby is fed?
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#5 of 22 Old 09-15-2008, 03:43 PM
 
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They don't ask you how your baby is fed???
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#6 of 22 Old 09-15-2008, 08:31 PM
 
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They didn't ask us when we filled out the papers for it. And they were very pushy about it being done before hospital discharge rather than waiting for the 7 day ped visit, said it didn't make any difference.
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#7 of 22 Old 09-15-2008, 08:44 PM
 
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Right. What paquerette said. They don't ask what the baby is eating. Also While some of the things tested for is ok to be tested before milk comes in, not all of them are.
With Galactosemia, the way the body metobolizes it will yeild a higher galacto count than bm, and is highly inaccurate for the count.
Waiting 24hrs after your milk comes in, or until your baby is passing breastmilk poos is best for that disorder. Other disorders not as necessary.

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#8 of 22 Old 09-15-2008, 09:27 PM - Thread Starter
 
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This is really interesting to me, as I've never read anything about waiting for milk to come in before PKU testing. Especially regarding hospital policies and procedures with newborns, PKU testing is done within 48 hours of birth before hospital discharge, well before some first time mamas have milk.

Does anyone have links or good, reliable, scientific information on this?

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#9 of 22 Old 09-16-2008, 10:06 AM
 
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My midwife also told me this - that you need to wait for the milk to come in to get reliable test results. Since it's no big deal to wait a few extra days, I say better safe than sorry.
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#10 of 22 Old 09-16-2008, 01:57 PM
 
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I have never heard anything about waiting until the milk comes in, however what I have learned is that it's most accurate if you do it at 1-2 weeks. So by then the milk would be in anyway. But I've never been asked how my babies were fed when I had it done.

And no, the whole point of the PKU test isn't to find out if your baby is able to digest milk properly. That may be a part of it, I don't know about that. But the reason we have it done is because at the same time it screens for thyroid problems and since I have severe hypothyroid I feel it's the best thing to do.
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#11 of 22 Old 09-16-2008, 02:15 PM
 
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Originally Posted by amydidit View Post
I have never heard anything about waiting until the milk comes in, however what I have learned is that it's most accurate if you do it at 1-2 weeks. So by then the milk would be in anyway. But I've never been asked how my babies were fed when I had it done.

And no, the whole point of the PKU test isn't to find out if your baby is able to digest milk properly. That may be a part of it, I don't know about that. But the reason we have it done is because at the same time it screens for thyroid problems and since I have severe hypothyroid I feel it's the best thing to do.
"PKU is a lack of a liver enzyme that causes the baby to be unable to breakdown the amino acid phenylalanine so that it builds up in the blood, causing irreversible damage to the brain and nervous system if untreated."
Breastmilk contains phenylalanine, if your baby has pku then you can still partially bf but you would have to supplement their diet as well.

Screening for thyroid is part of the newborn screening test which they do when they do the pku test. To test for pku they can simply test the babies urine with a strip in a fresh pee diaper. They draw blood because they can test it all at once. The newborn screening tests for many rare and treatable genetic, endocrinologic, metabolic and hematologic diseases.

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#12 of 22 Old 09-16-2008, 02:35 PM
 
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You can read Pregnancy, Chilbirth and the Newborn by Peggy Simkin or ask your pediatrician, but the PKU test is less accurate before 7-10 days after birth. It was developed back when women got a hospital stay of a week for childbirth. That is why most doctors will recommend retesting your baby in their office at the first office visit.

I decline the test in the hospital and have my pediatrician do it at our first appt to ensure that it is the most accurate. Why pay twice for the same test if you know one is 50% accurate and one is 90%?
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#13 of 22 Old 09-16-2008, 04:15 PM
 
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"PKU" is a misnomer, it's now actually "newborn metabolic screening" which includes about 30-40 other tests in addition to the PKU (depending on the state). Some are more time sensitive for diagnosis and treatment than others, and simply catching those early enough to alter the diet can save a baby from serious illness or even death. We will soon see a move to repeat testing - an early test to catch the ones that need to be caught immediately and a second around 2 weeks for the others.
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#14 of 22 Old 09-16-2008, 05:20 PM
 
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If they're going to do that, I wish they'd divide it between "things that can/should be done right away" and "things that can/should be done at the later visit" with less blood from each one. I know that it varies between provider skill and whatnot, but in our experience the test was horribly traumatic and I wouldn't wish it on my worst enemy, so they'd better damn well need every molecule of blood they're torturing out of my child.
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#15 of 22 Old 09-16-2008, 11:16 PM
 
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I work on an OB unit, and it is my job to perform the metabolic screen (which many people call the PKU) before the babies go home.

Not only do we have to mark down what the baby is eating (breastmilk, formula, both, or IV nutrition), but also how many hours old and how many grams the baby weighs.

We are not allowed to do the test before 24hrs, and we try to do it as close to discharge as possible.

A previous poster is right, the heel prick they do tests for MANY metabolic disorders. It's often called the PKU, simply because that is the first one they started testing for, and they have added on since then like 50+ diseases, but the name "PKU" has seem to stuck.

Waiting can be a dangerous game, because the sooner the disease is caught, the better the outcome. Babies don't always (in fact, almost never) display symptoms to many of these diseases, and if you're too late you're too late. You can only prevent the damage from happening, not reverse it once it's happened.


Also, it's interesting to hear someone say that they bleed easier the older they are. I have actually experienced the opposite. The ones I do at barely 24hrs bleed like a stuck hog, the ones that are a few days old I often have to poke multiple times. The younger ones are also more sleepy and don't even seem to notice me doing the test, the older ones pitch quite the fit though.
But maybe if they are a week old they'd bleed easier, the babies I do it on are never that old so I don't know.

This is an interesting topic. I'm having a homebirth and am still trying to decide when I am going to have the test done.
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#16 of 22 Old 09-16-2008, 11:37 PM
 
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That's exactly the way we do it here. I would encourage the OP to talk to her practitioner about the specifics of testing in her state. I have a hard time imagining running the test without knowing what the baby is eating, but if that is truly the case then the other posters may be right about waiting until the milk comes in, although I'm not convinced that the tests can't be accurate on colostrum feeding alone.
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#17 of 22 Old 09-17-2008, 11:36 AM - Thread Starter
 
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Thanks for all the info mamas...so the PKU test is best to be performed 7-10 days after birth for accuracy, while the Newborn Metabolic Screening (heel stick) is best performed with 48 hours of birth for accuracy/diagnostics/early intervention-treatment of conditions.

Here's some additional info I've found and thought I'd share:
PKU (phenylketonuria)
Babies with this disorder cannot process a substance called phenylalanine that is found in almost all food. Without treatment, phenylalanine builds up in the bloodstream and causes brain damage and mental retardation. When PKU is detected early, mental retardation can be prevented by feeding the child a special diet. All states and U.S. territories screen for PKU.

The blood sample for PKU is usually taken from your baby's heel (called a heel stick). The test is done in the first few days after birth, as early as 24 hours after birth. A follow-up test is usually done at age 7 to 10 days. A urine PKU test is done on a baby who did not have a blood test and who is older than 6 weeks.

Your baby should be drinking breast milk or formula for 24 hours before the blood sample is taken. PKU test results are more likely to be correct if the blood sample is taken after the baby has been drinking milk or formula for at least 48 hours.
http://children.webmd.com/phenylketonuria-pku-test

While researching, I found this site: http://genes-r-us.uthscsa.edu/
It lists by state via clickable map which metabolic tests are completed via the heel stick on every infant during the Newborn Screening. There's also clickable links to every states Dept. of Health regarding what the blood samples are used for, how they're stored and if they're disposed of along with waivers of care and requests for samples to be destroyed. There's also contact information for each Dept. of Health Newborn Screening contact person.

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#18 of 22 Old 09-18-2008, 06:19 PM
 
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PA is pretty backwards. I was trying to find info on the law today and they just updated to the expanded screen, beyond the 6 main ones, this summer.

That site with the map may be out of date, as the new federal law regarding DNA database supercedes any state policies.
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#19 of 22 Old 09-18-2008, 11:27 PM
 
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Here, in Oregon, they test after 24 hours, and then again at 2 weeks old. My youngest has a metabolic disorder and, because of the test at 24 hours, we discovered it at 5 days old and were able to begin supplementing her immediately with biotin (she has biotinidase deficiency). Since it was caught so early she should never show any ill effects from it. If it had not been caught early it could have had catastrophic effects. I know that these disorders are rare, but we had never even heard of it before she was diagnosed, let alone know that it could run in our family. This next baby will be supplemented from birth, just in case, until we get the results of the metabolic screen back. All of this to say that I wouldn't wait too long to get the test. The earlier treatment is started for some of these disorders, the better the outcomes!
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#20 of 22 Old 09-19-2008, 10:13 AM
 
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Will the test be accurate at picking up a deficiency if she's already being supplemented?
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#21 of 22 Old 09-19-2008, 01:10 PM
 
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Yes, because, in my case, the test is testing for enzyme activity, not the presence of biotin in the system. I can't speak to every disorder, but I know the one that we are at risk for is unaffected by supplementation. Since, in our case, biotin is a water soluable B vitamin, there is no downside to supplementing until the results come back.
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#22 of 22 Old 09-19-2008, 04:36 PM
 
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Cool. Good to know that you will be able to protect this little one immediately.
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