Will you do a PKU test for babe? - Mothering Forums
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#1 of 86 Old 03-11-2007, 10:42 PM - Thread Starter
 
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I'm posting this here, since its my understanding that it is a mandatory test in hospitals. My DD was born in a hospital and had the PKU test. We are doing a homebirth this time and now it is an option. We do not vax, so my instinct says to skip the test. (our midwife does not do the PKU) I'm not having much luck on-line with finding pros/cons of the PKU test, only finding the definition/explanation.

What are your thoughts?

TIA!
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#2 of 86 Old 03-11-2007, 10:51 PM
 
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We skipped it with dd. We will probably skip it again.

-Angela
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#3 of 86 Old 03-11-2007, 10:57 PM
 
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Yes we will do it. Unlike a vaccination there isnt anything harmful going into the baby.
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#4 of 86 Old 03-11-2007, 11:01 PM
 
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The chance of having a positive PKU is very rare.
If your baby was positive, and the positive test was confirmed through further testing, you would avoid serious consequenses.
For instance - one of the tests is for hypothyroidism. Rarely, babies can be born without a thyroid gland, or one that does not function correctly.
If it is treated early, you avoid the baby becoming retarded (Cretinism).
The same is true for most of the disorders that the PKU tests for - they can be treated if caught early. It is a screening test.
In 23 years of doing homebirths, I had my first positive PKU last year....
that tells you how rare it is, but they were glad they did it.
Many of my families refuse it. In California, the parent has to sign a form of refusal, even if the baby was born at home. The form has to be signed before they can get their birth certificate.

Carla
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#5 of 86 Old 03-11-2007, 11:12 PM
 
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Jumping in because this caught my eye...

Carla.... that's good information to consider, but if a parent wanted to delay a pku test what would the options be?

Jessica

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#6 of 86 Old 03-11-2007, 11:32 PM
 
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The PKU should be done after the milk comes in, because some of the tests are looking to see how the baby metabolizes protein, and if the test is done too early, you could get inaccurate results. A few years ago, a family sued a hospital because they had early discharge and the PKU was negative, but later the baby had a problem, and a repeat test was positive.
If it is a hospital birth, I would suggest asking your provider if you can sign a refusal. The rules may vary from in different states. In California, the hospital has refusal forms. They just don't want to be held liable for not offering the test, then having it be a problem.
I offer them at 5-7 days, after nursing is well established. The baby has better circulation then too, so it makes the test easier. It should be done on the SIDE of the heel, never the back - so make sure the lab tech has done it before and knows that. It REALLY helps to warm the babies heel with a wash cloth before you have it done....it makes the circulation to the heel increase.
If there is a problem, you want to catch it early.

Carla
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#7 of 86 Old 03-11-2007, 11:35 PM
 
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Yes, probably around a week PP, just like with DS.
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#8 of 86 Old 03-11-2007, 11:42 PM
 
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I refused it with my first dd in Japan and the mw was fine with that.....honestly I had no idea what she was talking about and then I said do I need it? and she said, it's not mandatory so I said no......I couldn't bear the thought of putting a pin in my dd when she was so little......

then with dd#2, hb in the US. the mws explained what mendomidwife did and it seemed to make sense to do it. anyway, they used a prick that they said was a lot less painful than the ones used in most hospitals, maybe mendommidwife can talk about that??

but my dd was asleep and they did it (about 5 days postpartum) and she didn't even flinch so it was fine.....
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#9 of 86 Old 03-12-2007, 12:07 AM
 
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There is more to test for than just PKU. www.pediatrix.com has the most comprehensive screen. The biggest risk is your risk of a infection from the heal poke.

Metabolic disease is much easier to treat if you know early. There is far more damage done than just mental retardation and death. Think total emotional, physical, and financial upheavel.

Keep in mind, we are living in a world where it is not the least bit easy to get a diagnosis of metabolic disease UNLESS your child is dead or in the ICU.

Your child can be the first "affected" individual in a very long family line of no one "affected." Carriers have to have children with other carriers. AND some metabolic diseases happen spotaneously. Your one sister who is very hypoglycemic. Your FIL who has achy legs. Your great great uncle who never seemed quite right. Your grandfather who had no tolerance for alcohol. Your other "allergic" child who has no confirmed allergies.

Some people are not diagnosed with metabolic diseases until they are in their 50s. Most children are diagnosed at their autopsy.

There are about 50 screens, but nearly 1500 metabolic diseases. Still, knowing early saves lives.
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#10 of 86 Old 03-12-2007, 12:28 AM
 
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i just had it done for my DS. he was feeding at the time and didn't make much of a fuss at all. he whined a bit but never stopped feeding. i had it done with my DD two years ago when they were testing for just 2 conditions. now the test looks for 19 different conditions. seems worth it to me.
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#11 of 86 Old 03-12-2007, 12:48 AM
 
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Not pregnant right now, but yes, we did the test and I'm glad we test, she tested positive for a hemoglobin trait. The test in California is very comprehensive and includes more than just metabolic diseases.
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#12 of 86 Old 03-12-2007, 01:59 AM
 
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Yes....they test for PKU, but there are many different tests that are done on the sample.
I do it in my office and let the mother hold and nurse the baby while we do it. The problem in the hospital is that sometimes they wheel the baby to the lab, unwrap it and it must be scary......
If you have a hospital birth, ask the nurses if they can do ALL baby procedures with you present....it can't hurt to ask.
There are different lancets that can be used, some seem more gentle, but...to be honest, some babies scream, some sleep through it....and I think that has to do more with temperment than technique, because I am always gentle and I always make sure the heel is warm or you can risk having to poke it too many time which makes them mad !!!
Sometimes the PKU is the first time new parents hear their newborn really cry....but by the third baby, they're like....let's just get it done.....lol.
I don't know...I honor if a family doesn't want it, but you would feel terrible if it was something you could have prevented. I guess it's another difficult parenting decision we all have to make.

Carla
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#13 of 86 Old 03-12-2007, 04:36 AM
 
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Quote:
Originally Posted by mendomidwife View Post
The chance of having a positive PKU is very rare.
If your baby was positive, and the positive test was confirmed through further testing, you would avoid serious consequenses.
For instance - one of the tests is for hypothyroidism. Rarely, babies can be born without a thyroid gland, or one that does not function correctly.
If it is treated early, you avoid the baby becoming retarded (Cretinism).
The same is true for most of the disorders that the PKU tests for - they can be treated if caught early. It is a screening test.
In 23 years of doing homebirths, I had my first positive PKU last year....
that tells you how rare it is, but they were glad they did it.
Many of my families refuse it. In California, the parent has to sign a form of refusal, even if the baby was born at home. The form has to be signed before they can get their birth certificate.

Carla
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#14 of 86 Old 03-12-2007, 04:52 AM
 
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Originally Posted by mamaverdi View Post
There is more to test for than just PKU. www.pediatrix.com has the most comprehensive screen. The biggest risk is your risk of a infection from the heal poke.

Metabolic disease is much easier to treat if you know early. There is far more damage done than just mental retardation and death. Think total emotional, physical, and financial upheaval.

Keep in mind, we are living in a world where it is not the least bit easy to get a diagnosis of metabolic disease UNLESS your child is dead or in the ICU.

Your child can be the first "affected" individual in a very long family line of no one "affected." Carriers have to have children with other carriers. AND some metabolic diseases happen spontaneously. Your one sister who is very hypoglycemic. Your FIL who has achy legs. Your great great uncle who never seemed quite right. Your grandfather who had no tolerance for alcohol. Your other "allergic" child who has no confirmed allergies.

Some people are not diagnosed with metabolic diseases until they are in their 50s. Most children are diagnosed at their autopsy.

There are about 50 screens, but nearly 1500 metabolic diseases. Still, knowing early saves lives.
So... would it be possible to essentially do the newborn screening on a toddler? My daughter is one of those "allergy" children with no positives to allergens. They did her PKU only a couple hours after she was born. Would it be feasible to do a pediatrix.com one and have relatively accurate results or is it strictly a newborn thing.

GREAT MOM to dd (5) and )ds( [sept 26 2006]
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#15 of 86 Old 03-12-2007, 08:01 AM
 
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We have done the PKU with all our three children. I know they rarely find anything but in the few cases where they do then it is lifesaving and will make a world of a difference.
The only sideeffect to the test is a second of pain and a minute of discomfort. I have nursed my children through having the test done and they hardly even cried.

I think the risk that they find something is like 1:3000 for the most common conditions, but someone has to be that 1 child in 3000.

Last year our daughter nearly died due to a very rare intestinal condition called intussusception. The frequency for girls to get this is 1:2000 - yet our little girl was the one to have it. The first doc we saw about her bloody poops just said - "Well the symptoms say it could be intussusception - but that is such a rare condition. Nahh - I say it is just a virus. Go home and take some poop-tests.."
That could have cost her life if we hadnt called another doc for a second opinion. He said - Head for hospital NOW! So we did and it saved her life. SO - point being that even though it is rare that they find anythign with the PKU test - then someone WILL get a positive answer - and I would not like to be the one not having the test done to my baby and then too late find out that my baby was the 1 in 3000..

Single mom to ds(8), dd(6) and ds(5)
 

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#16 of 86 Old 03-12-2007, 09:27 AM
 
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for those who are interested, Baylor University does an extended panel of tests and I think it costs only $25.You can google for more info. They send a packet of info.
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#17 of 86 Old 03-12-2007, 10:16 AM
 
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Yes, my MW pays for the extended testing and we do it around 1 week PP.

Keri

 Keri wife and Mama to  Cory 17,  Brendan 15,  Kerianne 8,  Avery 7,  Lilia 3
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#18 of 86 Old 03-12-2007, 10:18 AM
 
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We will defintely do the test. Our 2nd dd came up positive for Galactosemia. With this disease I had to quit bf until the test results came back, which took 5 weeks. We had to go to a genetic doc and have the tests done. It came back that she didn't actually have the disease but was a carrier. Which will be good for her to know when she starts having her own children. My husband and I were both tested and he is the carrier.

It was a VERY difficult time, as I did not feel that she was sick and desperatly wanted to keep bf her. The nurses at the ped obviously didn't even know what they tested for either. The rudely told me to just accept that my baby had pku and get over it. And afterwards when she was cleared of even having the disease they didn't support me to start back bf'ing. But, I ignored the nurse that asked me why I would go through the trouble of starting bf'ing again, and got a nursing supplemental system from the hospital and after 2 weeks I had all my milk back. 2 years later my dd was diagnosed with type 1 diabetes, which I feel she got it at such a young age was because she missed out on 5 weeks of bf'ing at a crucial time.

With that said, I don't regret it at all, because if she had of had the disease my bmilk would have killed her. We still test the rest of our dc to make sure they aren't a carrier and so far she is the only one.

wife mum. dd(12) , dd(10) , dd(8) , ds(7) , dd(4), ds(2) , dd's(9mths) !
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#19 of 86 Old 03-12-2007, 10:40 AM
 
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I did it. My dh is a sickle cell carrier, and one of our children is as well, which we found with the test (It's not just PKU, so maybe they should rename the test). In our state the heal prick tests for a multitude of issues, including SC. It doesn't put anything in the child, but gives a heap of potenitally good info. Of course, knowing you are a SC carrier isn't important in childhood...it's only important later.

If you choose to do it, try to nurse the baby through it. My hb midwife did it each time, and she was very good at it. One of my babes slept through it, although the others didn't. But it was over quickly, and I did want the info the test provided. (The likelihood of infection from a heal prick at home by your midwife is pretty much zero-- about the same as getting an infection from having had a homebirth, kwim?).

ETA- One of my nephews has Galactosemia, which was found through this testing. That is important to know in childhood. So, while PKU itself is rare, in our family two of our babies were identitifed with issues through this test. Purely anecdotal, however. Just sharing our experience.
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#20 of 86 Old 03-12-2007, 10:54 AM - Thread Starter
 
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wow, thanks for all the replies/info! i think we'll wait until a week pp and do it then. I'm thinking we'll do it at home, as we do not have a regular doctor at this point. though, we do have plenty of time to find someone.

Is it pretty straight forward to do the testing at home?
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#21 of 86 Old 03-12-2007, 11:58 AM
 
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Quote:
Originally Posted by ~Mom2thhts~ View Post
We will defintely do the test. Our 2nd dd came up positive for Galactosemia. With this disease I had to quit bf until the test results came back, which took 5 weeks. We had to go to a genetic doc and have the tests done. It came back that she didn't actually have the disease but was a carrier. Which will be good for her to know when she starts having her own children. My husband and I were both tested and he is the carrier.
Interesting to hear. That is one reason I consider not doing it. I don't want a false positive to make me stop breastfeeding.

-Angela
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#22 of 86 Old 03-12-2007, 12:16 PM
 
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Is it pretty straight forward to do the testing at home?
Yep, it's really easy. We've opted to do it after each of my dc's births but with the first two we did it at the hospital, then with my twins I realized my mw could do it so we did it at home. They warm the heel then prick it with a special device then squeeze the blood out until it fills up these circles on a piece of paper. If you nurse the baby throughout you probably won't have more than an initial little cry at the prick, if that. I've had 2 of my baby's not even notice aside from flinching initially. This IS a screening I feel is very important and I'm absolutely one to avoid intervention.

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#23 of 86 Old 03-12-2007, 12:52 PM
 
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Yes, the name is confusing...originally that is what the test screened for...now it screens for a battery of tests in three areas...
Metabolic (chemical reactions), Endocrine (thyroid), and Hemoglobin (blood disorders).
In California it is called Newborn Screening Test. It automatically includes the expanded testing....about 100 different tests. If you think about it - it's a pretty good deal....
It would not be difficult to do at home. BUT, in California for Medical to pay for it, it has to be done in a LAB. Also, it is difficult for midwives to bill insurance for the test...the paperwork and coding is a nightmare....so beware of that.

Carla
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#24 of 86 Old 03-12-2007, 01:41 PM
 
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I nursed with first the the prick.

Biggest mistake I made.

She came off the breast screaming. Poor baby was afraid to nurse for awile. She would start to latch on but come off crying as to afraid to nurse. Poor thing. The hospital lab did her prick.

Our next 2 babies where sound asleep and never woke up during the prick. Their blood clotted so well that the poor mw had a terrible time getting all the circles filled in. My mw was gentle and knew how to do the prick with the least amount of pain compared to the hospital which had no compassion for the baby what so ever IMO.
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#25 of 86 Old 03-12-2007, 01:44 PM
 
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Our pediatrician forced us to go to the hospital and get this done, saying it was against the law for us not to have it done. My DD was 10 days old, and when we brought her in, they didnt want us in the room. We refused to leave, and they put her in one of those clear bed things for babies, and the woman pricked her heel. She kept squeezing her foot and making her scream harder, and it was so cold in there, and sooo blindingly bright for some reason. It took FOREVER and she screamed and screamed and screamed. It was absolutely horrible. I felt so bad for it, wondering if there was a better way.
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#26 of 86 Old 03-12-2007, 01:48 PM
 
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My midwife does it at one of our home visits.

I nursed my babies through it and they didn't even stop nursing- same with the hearing test.

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#27 of 86 Old 03-12-2007, 05:13 PM
 
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Originally Posted by the_lissa View Post
My midwife does it at one of our home visits.

I nursed my babies through it and they didn't even stop nursing- same with the hearing test.

Did you have the hearing test done at home? How did that work?
They do it at the hospital here, but I have not researched having a way to do it at home. I assumed the maching would be expensive.

Carla
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#28 of 86 Old 03-12-2007, 05:19 PM
 
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The hearing test is actually at the clinic at the 6 week visit (all postpartum visits are home visits, except the 6 week one here.)

Although if you don't want to do the test then or if your baby needs it redone, you can get it done at an auditory clinic here for free.

ETA: my first was a hospital transfer, but I still did the hearing test at the 6 week visit at the midwife clinic because my midwives said there is a really high false fail rate in the hospital since so many newborns still have fluid in their ears that can affect the test.

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#29 of 86 Old 03-12-2007, 06:16 PM
 
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We did not skip this test/newborn screening. I feel it is important since (in Texas) they screen for a ton of different syndromes. Our mw did it at our 3 day visit & it was about $30.

A doula who married a cop & became a mama to 3 boys: G 12/22/00, my rainbow baby B 2/2/07 and L 2/10/10 my CBA2V baby, waiting for my little caboose late February 2013 & always remembering my two angels 2006 & 2012.

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#30 of 86 Old 03-12-2007, 08:10 PM
 
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Originally Posted by mendomidwife View Post
The PKU should be done after the milk comes in, because some of the tests are looking to see how the baby metabolizes protein, and if the test is done too early, you could get inaccurate results.
Carla
See, I've heard this a few times, but I thought the tests were genetic in which case they shouldn't be affected by what has been metabolized. I would think the inaccurate result might be from it being done improperly (like in an example someone gave above with the baby's heel being squeezed)

ETA-- I finally found a source for the PKU I see that one tests for the actual phenylphaline(sp?) level in the blood. Nevermind. Wait I shall.

~laura
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