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Discussion Starter · #1 ·
Do you plan to get the PKU screening done? Why or why not? If yes, when? Where and by whom?<br><br><br>
I'm planning a UC and am thinking I'll taking baby in after a week or so (after nursing is established with good milk supply). I want to wait, because some of the tests aren't effective if baby isn't on full milk yet. I'll probably go to the DO's office if they can do it there.<br><br>
I'm thinking we should get it done because some of the diseases it screens for can be completely remedied if caught and treated early, but could kill the baby if left untreated. Honestly, though, PKU screening is one of my less educated areas, so if anyone has any info to share, I'd appreciate it.<br><br>
Why would someone be against PKU if done after a week or so? Besides the heel stick and the state records of DNA info...
 

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There a lot people that choose not to do PKU. There are apparently a lot of false positives and a lot of "borderline" results that (if you have an overzealous Dr.) will require fast treatment. If you do decide to test, make sure if you get a positive that you retest. In each of the conditions except for the rarest one, there are symptoms to look for. I have a list somewhere printed off about them... PM me if you want me to find it. It's around here somewhere.<br><br>
Also, I did decide to have it done with my DS. It was really an awful experience and I've thought about that day in the lab so much. I wish I would have scooped him up and just taken him out. But, I didn't. The longer you wait after birth the better the baby is getting milk, which is good. But, the longer you wait after birth the less strongly the blood spurts. The woman that did the blood draw on Jude said her favorite blood draws are done on preemies because you don't have to worry about the blood clotting so much. Jude was 1 week old and it was a really painful encounter for both of us. At least I know my son's blood clots really well. But, i can't get over that we brought him into the world as peacefully as we could. We didn't circumsize him. But, then I took him to have a blood draw that left him screaming for a full hour and resulted in two badly bruised feet and a baby that wouldn't latch on for hours afterwards. I won't do it again. I'll look for the symptoms.<br><br>
Edited to add: Even the MW I'm seeing thinks PKU screening is not a needed thing. She's the one I got the list from.
 

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My MW will be doing the PKU in her office one week PP. I have never heard of anyone getting a positive result, false positive or otherwise but it wouldn't surprise me.<br><br>
Keri
 

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Hi there. I am hoping for a homebirth with my next child too. I wanted to chime in and say that I will certainly be getting the heel stick done that tests for PKU, and several other disorders, and I will also do research to make sure exactly which tests my state runs (not all test for the same disorders) see this thread <a href="http://mothering.com/discussions/showthread.php?s=&threadid=38314&highlight=newborn+and+screening" target="_blank">PKU Testing</a> . I actually know a little girl with PKU and without the initial heel stick at the doctor's office, she would have died. I live in a very small town, so it's interesting to know someone with suck a rare disease. Good Luck with your decision.
 

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WE did have it done - my homebirth midwife does them at the 10 day visit after they have had breastmilk for at least 48 hours - before that it is pointless. We opted to have this done because liek you we felt it is a screenign and it can catch a potentially deadly condition without being too terribly invasive (as invasive as any finger prick can be)<br><br>
We jsut had our newest DD at hoem in a waterbirth 8 days ago and she was tested today.
 

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We had the PKU test done for both babies. For our first, our mw came to the house and for the second, we went to the mw's office. Not sure what we'll do this time (homebirth).<br><br>
Since the heel stick is certainly at least unpleasant, I nursed while the stick was done. Neither of my kids fussed much about it.
 

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We are still undecided though we didn't have it done with Hero.<br><br>
The bad thing I have heard about it is the false positives and the recommended treatment. ( I think this is from Dr Newman but I am so not sure and cannot remember where I read it all, but I will try to find it) The treatment for PKU is no breastfeeding and special formula. In the opinion of the mystery doctor that I can't remember for the life of me this is not a good option and some breastmilk is good for these babies. The only concern I would have is a false positive and being forced to not breastfeed. But as someone suggested a second test might be just what you need.<br>
I really wish I could remember where I read all this and I will try to find it for you.<br><br>
Thanks for reminding me to think about this. I have no idea what we'll do. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/confused.gif" style="border:0px solid;" title="Confused">:
 

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With our first we had it done at the hospital lab I think at about 10 pp.. I bf dd while it was being done she came of the breast stopped breathing and then screamed bloody murder for the longest time she was very timid about bfing for awhile after that. It only took one prick and no squeezing as she had plenty of blood. It was so bad I swore I would NEVER put one of my children through it again. Well child #2 came along and my mw talked/gave info about it and I relented after reading what I could do to help relieve the pain. M/W did the prick and even thought it took 2 pricks alot of heat and squeezing to get enough blood dd never woke up.<br><br>
My mw has a private lab in Oregon do the testing.
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;"><i>Originally posted by 2much2luv</i><br><b>We are still undecided though we didn't have it done with Hero.<br><br>
The bad thing I have heard about it is the false positives and the recommended treatment. ( I think this is from Dr Newman but I am so not sure and cannot remember where I read it all, but I will try to find it) The treatment for PKU is no breastfeeding and special formula. In the opinion of the mystery doctor that I can't remember for the life of me this is not a good option and some breastmilk is good for these babies. The only concern I would have is a false positive and being forced to not breastfeed. But as someone suggested a second test might be just what you need.<br>
I really wish I could remember where I read all this and I will try to find it for you.<br><br>
Thanks for reminding me to think about this. I have no idea what we'll do. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/confused.gif" style="border:0px solid;" title="Confused">:</b></td>
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The little girl that I know was (she is about 6 now) on a special formula...her mother tried to breastfeed (before the results came back) and this little girl stayed deathly ill. There is protien in breastmilk and PKU babies cannot have any protien..whatsoever. Her body couldn't process even the tiniest amounts of protien. What I am not aware of is whether or not there are different levels of PKU (ie, autisim...there are slight and then severe cases). If there are, maybe this little girl has a severe case and that is why she cannot process any protien.
 

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How sad, justice! Does anyone know if there are any "risk factors"..genetic signs that show an increased incidence or anything?<br>
What are the pain relieving techniques? Heat to the heal before the prick?<br>
Thanks.<br>
Beth<br>
(Sorry to hijack your thread, Whit)
 

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I have not and will not do the PKU test. Here is what Dr. Mendelsohn has to say:<br><br>
"Another beloved procedure that your infant child will be subjected to is the PKU (phenylketonuria) test. Legally mandated in most states, it is given to determine whether an infant is a victim of a rare form of mental retardation. The condition is caused by an enzyme deficiency, but it occurs in less than one out of 100,000 babies.<br><br>
"The PKU blood test itself is not dangerous, except that it does require insertion of a needle that will open a pathway for the bacteria that abound in every hospital nursery. The problem lies with the test results, which are notoriously inaccurate and result in many false positive findings. If your child is diagnosed as a victim of PKU, he will be placed on a restricted diet composed of protein substitutes that have an offensive taste, tend to cause obesity, and become terribly monotonous. There is disagreement among doctors on how long the diet should be continued. The range is from three years to life. Most doctors who diagnose PKU will not permit the mother to breastfeed.<br><br>
"It is ridiculous, in my judgment, to condemn children to an obnoxious special diet based on a test that may be wrong, for a disease that rarely occurs, when the prescribed diet itself raises serious questions. Seven years ago treatment centers in the United States, Australia, England, and Germany revealed that some children with PKU showed progressive neurologic deterioration 'even though their disorder had been diagnosed early and dietary treatment had been promptly instituted.' All of these children labeled as having 'variant forms of PKU,' which differed from the classic form, died.<br><br>
"Unless there is a history of PKU in your family, my advice is to avoid the test and breastfeed your baby, which I believe to be the best treatment anyway, even if he has the disease. If you can't escape the test, and the finding is positive, insist that it be repeated a couple of weeks later to assure that the first result was accurate. If it is still positive, make sure that the doctor determines whether the PKU is the classic or a variant form, and make certain that the diet your child is given is appropriate for its type. Finally, insist on continuing to breastfeed along with the diet, because that's the best overall health protection your child can have.<br><br>
"If the second test is negative, don't fret for years wondering whether the first one might have been right. One of the unfortunate consequences of all forms of indiscriminate mass screening is the emotional trauma parents go through when a false positive reading is given. I have had more than one mother ask me years later, 'do you think "it" (late talking, late toilet training, etc.) might be PKU?' The same thing happens when a pediatrician tells a parent that a child has 'a slight heart murmur.' This sounds threatening, but unless there are other symptoms, they are simply an innocuous finding that does not signify disease.<br><br>
"The list of obscure diseases for which mass screening of newborns is required is steadily expanding, although the requirements vary widely from state to state. Doctors are the prime movers behind this legislation, and in my judgment they are also the prime beneficiaries. It is ridiculous to expose all children and their parents to the physical and emotional risks of screening for diseases that aren't seen more than once in a blue moon."
 

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I had a UC with my first and did PKU at 2 weeks or so.With my son I did it at 3 days.I will probably skip the test for future kids.<br>
sara
 

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My son is 12 days old and I've been debating on whether or not to have the PKU done. I didn't have it done at the hospital and I assumed I'd have it done at the pediatrician's office, but when we went to the lab the horrible wench wouldn't even let me hold my child while she stuck his foot so before she could even touch him I swept him up and ran out of there with him. He would have symptoms by now if he had any of those diseases right? God, please tell me I haven't done something horrible to my son.<br><br>
Ashe, mom to Kolaiah 09/09/03 and Gabriel 04/21/99
 

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I am sure a google.com search will turn up plenty of PKU info.I would not fret,but if you are concerned why not go to another lab and have it done?Just be sure to properly prep the foot,and insist on holding your child! I had my dd done at 2+ weeks.Congrats on your little one!<br>
Sara
 

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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;"><i>Originally posted by DreamsInDigital</i><br><b>please tell me I haven't done something horrible to my son.<br></b></td>
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You haven't. I'm sure he's fine. Those conditions are pretty rare.
 

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Each state has a variety of things that they test for - above and beyond PKU. In my home state of Oregon, there are about 35 things that are being tested for, the most common occurring in one out of 2000 babies.<br><br>
It's important to know what your state tests for - and if the occurrance of the diseases listed warrants a screening test. This is a very personal choice by the parents.<br><br>
It is true that it is just a screen. It does NOT diagnose. In my state, they call the provider and parents right away and set up an appointment to diagnose within 24 hours. It is serious here, and treated seriously. They do not spare time, but they definitely want a definitive diagnosis, not just a "maybe" before taking drastic action.<br><br>
The best time to do a one-time test in my state is at three days. You'll miss a small percentage of hypothyroidism issues and some other amino acid stuff that is very rare, but if the parents only want one test, three days is the best time. This is the information I've been given by the researchers that run the lab.<br><br>
To find out what your state screens for, check out: <a href="http://www.cdc.gov/nceh/dls/newborn_screening.htm" target="_blank">http://www.cdc.gov/nceh/dls/newborn_screening.htm</a><br><br><br>
When I do a newborn screen, I make sure that baby is in mother's arms, nursing. I hold a warm washcloth on the baby's heel, to generate blood flow, and talk quietly. I use a special one-time lancet device that slices the skin on the foot, rather than create a puncture wound (I was taught to do puncture wounds, with a little twist, which produced TONS of bleeding, pain and a horrible bruise!). Most babies resist to my handling of their leg as I get the blood on the specially treated paper. Very few cry and I find that it's easier to do in mother's arms.
 

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Discussion Starter · #20 ·
Great info, thanks. Here's what it had to say about CO and WY combined. OR tests for 35 conditions, but CO and WY test for only 6.<br><br><div style="margin:20px;margin-top:5px;">
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<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">...conducts tests for six conditions in newborns: phenylketonuria, congenital hypothyroidism, galactosemia, cystic fibrosis, hemoglobin disease, and biotinidase deficiency.<br><br>
...Testing of all of the approximately 62,000 Colorado and Wyoming newborns each year. Of all newborns, an average of 35 each year will be identified with one of these conditions.</td>
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I don't know much about some of these conditions... Are most of them hereditary? We have no history of any of these on either side of our family.... Hmmm....
 
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