# PKU testing



## earthmama007 (Dec 29, 2001)

Ok I am having baby 2 in early April or so. I have some questions about the PKU. Is it necessary in your opinion. I had that done with my first and just starting wondering if I should have. I think if the test came out positive or whatever it says....then I would have stillBF'd and just changed our diets to assist. But on the other hand what are the real chances of it coming out positive. Maybe it is best to know so you don't make a mistake.







:
I don't know but what did and/or would you do. Did you make the right choice?


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## AmyG (Jan 30, 2002)

I don't mind that test at all. It's not just PKU that it tests for--it also tests for thyroid disorders and a few other things. The thyroid problem is actually much more common than PKU. I know that a heal prick is uncomfortable, but in the greater scheme of things, it seems worth it to me. All of the problems they screen for with that test are potentially life-threatening and relatively easy to work around if found early.


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## Mommasgirls (Nov 5, 2002)

That test I don't have a problem with. I nursed when it was being done,didn't phase Abbie at all. I would prefer to know about a problem ASAP and not wait until baby was sick.
JMHO


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## Moon (Nov 25, 2001)

I don't have a problem with the PKU test itself, I have a problem with the timing of it.

It Virginia, it's "mandatory" that the baby is tested before s/he leaves the hospital, regardless of how old the baby is at that time.

In my case, I left within 12 hours. They insisted they do a PKU, and I insisted it would be inaccurate at that time and refused to let them.

Why stick the babies if they KNOW the test is going to be inaccurate and will probably need to be repeated?


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## grisandole (Jan 11, 2002)

I didn't have a prob w/it; however, I didn't have it done untill a week after ds was born, so I didn't worry about the test being faulty. You should do that; there's no reason to have it done right after they're born.


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## Peppamint (Oct 19, 2002)

Is the PKU test the heel stick test they do that tests for something like 6 diseases?

My papers the midwife gave me said 'they come back to do the test', but not when. I assume a day or two later.

A few of you mentioned timing... does anyone have links to info on this?


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## nikirj (Oct 1, 2002)

It isn't accurate for the first 24 hours or so. I stayed in the hospital for about 26 hours and it was done right before I left.

I had it done because it tests for more than PKU, it is a quick test (my kids nursed through it), and the diseases it tests for are easily controlled (diet for PKU, for example) but are completely incapacitating (and I mean COMPLETELY, like death/serious retardation) if they aren't detected and dealt with RIGHT AWAY. Plus, they aren't actually injecting anything or doing anything that might be dangerous to the baby, it is just a couple of drops of blood. It took the tech that did it about 5 seconds and my kids nursed right through.


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## momto l&a (Jul 31, 2002)

We had it done for our 1st dd at the hospital I cant remember how many day after her birth (10?) it was the worst thing I had been tru with her, she came off the nipple stopped breathing for a little bit then screamed bloody murder for a while, couldnt bf for she wanted nothing to do with it for awhile. I bf cause that what I read I should do, bad advice cause then the baby think bfing cause pain, and the lab person didnt know how to do it right (painfree). I swore I would NEVER put on of my babies tru that again but then my mw told me they test for alot more the PCU, and I did some more reading on it and agreed to it for dd #2

second dd our mw did and she knew how to do it as pain free as possible ( hot cloth wrapped around babies foot to bring blood) and my sweet baby slept tru the whole thing while I held her, her foot even had to be pricked twice and the little thing twisted to help bring more blood







I was prepared to nurse her as soon as it was over but she didnt need it.

I would advice doing a search like on google and getting as much info as you can about the infant screeening test.

Differant States test for differant things, my mw doesnt use our states lab as they arent as through as a private lab she uses.


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## earthmama007 (Dec 29, 2001)

Thanks for you inputs. I do know about waiting and we did wait 7days. It is good to test for all those things I forgot it was more than PKU. I will be doing it and not have any giult. Thanks


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## gretasmommy (Aug 11, 2002)

Althought he test is referred to as the "PKU" test, it is a much more comprehensive newborn screening test. Each state offers a slightly different version, and some even offer the expanded version for free, which tests for over 75 inborn errors of metabolism - many of which are extremely rare but fatal and present almost no symptoms until late in the course of illness. The ideal time to test is at 48 hours of life, as the baby is old enough and has been eating (even colostrum counts!) for long enough to give reliable results, and yet not too old to have been harmed yet by any of these illnesses.

Check with your midwife, who should have information on what is tested for in your state.

I nursed DD throughout the heel prick, after first wrapping a warm diaper over her foot to promote better bleeding . . and she hardly noticed!!!!

Andrea
mommy to Greta 3/14/02


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## HotMama (Oct 26, 2002)

Quote:

_Originally posted by Moon_
*I don't have a problem with the PKU test itself, I have a problem with the timing of it.
Why stick the babies if they KNOW the test is going to be inaccurate and will probably need to be repeated?*
This was my problem with the test here in Oregon. Dd was born in a hospital and they wouldn't discuss timing, ie doing the test at one week instead, so she'd only have to do it once (they do it 2X here) and it would be more accurate.

Since dd is adopted, I was feeding her a combo of my colostrum, birthmom's colostrum and donated breastmilk from friends, so the test was more accurate at 36 hrs (when she had it done) than it would be with a bio baby. I do wish I had said no at the time and just waited to do the second test at 2 weeks (their schedule).


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## Peppamint (Oct 19, 2002)

Now that I think about it, that is the test that the nurse did when she came to our house a few days after dd was born (we left the hospital 17hrs after dd was born).

I think we did the test about 2 1/2 days after dd was born. It wasn't bad at all... I nursed dd through it.

My midwife did say she uses a hot cloth to bring the blood down to the foot for the heel prick.

Probably one of the least invasive things done on newborns compared to circumcision, vit. k shot, eye goop, staying in the nursery or in a bassinet by his/herself.


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## captain optimism (Jan 2, 2003)

I STILL haven't had my baby (any day now!) But I wanted to say that I met a woman in an airport waiting area who is an activist around one of the (very rare) genetic diseases that the PKU battery tests for. After hearing her story, about how impaired and ill her child is and how easily it could have been avoided, there is no way I would say no to this exam.

You could argue that you don't need to do the other newborn procedures, but this one seems like the benefits outweigh the detriments by quite a lot.


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## oceanmommy (Nov 24, 2001)

Well we live in Oregon too, and dd was born at the hospital but we left without having the test done. We told them our Dr or MW would do it and they gave us the card to send to the lab with the sample.

We did the test cause it screens so many illnesses and at that point (a week old or so) dd was was a slow weight gainer and we wanted to rule out anything serious. Our MW did it at home, warmed dd's leg beforehand and gently massaged to bring down the blood. DD cried for just a moment, and of course her foot was a bit sensitive for a day or two but we have not regretted it.


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## ebaby (Aug 22, 2002)

I would strongly advise to do this test. It is best to do it after 36hrs and the info gained can change your life forever. (and save your baby brain damage)
Otherwise I am advocate for no other testing.
IMHO, that is all
K


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## lilyka (Nov 20, 2001)

For me it was just one thing not worth fighting over. My lastt two children were slightly traumatized over the whole thing (these girls just don't bleed - and yes they used a heel warmer every time) . The first time they didn't get enough blood and had to redo the test. I got a call from the health department that afternoon wondering why we hadn't done it yet (5 days old) and I had to have them call the lab before they believed me. They are really on top of that one. Noone has had a problem with me delaying it until my milk had come in. I just had to have an appointment made before I left the hospital.


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## heartmama (Nov 27, 2001)

I guess I am the dissenting voice.

If the PKU test were painless I might not have cared, but as there was a degree of pain, I had to really justify that it was absolutely necessary before I could agree to it. I researched PKU. It is extremely rare, there are early warnings to watch for, and only prolonged, untreated PKU causes permanent damage. I felt educated enough to forgo the test and be mindful of the symtoms should they appear. I'm not judging anyone else. I felt totally comfortable with this approach, given the nature of the disease and the relative obsurity of it (1 out of every 15,000 newborns).

And on a personal note, what ds did have was several cardiac defects that he almost died from before he was two weeks old. After that, I found out that the #1 MOST common birth defect is...a heart defect. Despite reading every baby book on the market, I had never run across that statistic. One in every 100 babies will have a cardiac defect.

Statistically, giving every newborn an ECG for cardiac defects would be more appropriate than a heel stick for metabolic disorders.

I also want to add that parents have every right to scrutinize any medical decision, and weigh the added risks where pain and invasiveness are involved. Needle sticks always risk infection, however remote. Emotional trauma from a painful medical procedure is very real and can wreak havoc on nursing, sleeping, and general temperment with a newborn. PKU is so rare, it is a shame that parents are pressured into accepting any degree of risk in testing for it (in my opinion).

Again, I'm not saying parents shouldn't do the PKU test. If you have any concerns, or feel your baby is at risk, absolutely get the test. But the testing recommendation for PKU is an impersonal beaurocratic decision. It is not a reflection of the greatest medical risk to a newborn. Like so many other issues, parents, not the medical establishment, have to evaluate for themselves what medical choices are really in the best interest of their child.

Heartmama


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## oceanmommy (Nov 24, 2001)

The PKU test actually tests for many illnesses, not just PKU.


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## ebaby (Aug 22, 2002)

I would have thought just like Heartmama, but because we himebirthed with a CNM, she told us she is required by law to do this test. (I declined ever other test shot poke prod etc from before conception on!)
To make a long painful story short:
She said we could sign a form and say no but she strongly advised us to do it. So at one week she came out to the house and did it. It was aweful,he cried, I sprayed milk all over and cried and cried. A week later she called and said it was all good.
At 3 weeks my baby became very very ill and at exhaustion of every option (and my husband completely freaking out) we finally had to go to the hospital. Besides being treated like a criminal because we had our baby at home and refusing profalactic antibiotics at check in, they refused to believe we had done the test because everything indicated my babe had a metabolic disorder that is tested for on the pku panel. (and I was obviously a negligent momma) Finally I got ahold of our CNM and she confirmed we had done the test but it was as if they would not take her word for it. his labs (from blood taken in the ER) indicated that something was VERY VERY WRONG and in fact they told us he would DIE! His amonia level was well over 2000 (it should be >30) and they admitted us. I felt as if DHS(department of human services) would come storming in at any second to arrest me & dh. It was aweful and it took several days and lots of speculation of what horrific metabolic disorder it was before it was finally solved. In the process my ds lost 2+ pounds (so he was just over 4lbs) and was
completely lethargic unable to nurse and not responding. I know from nursing staff that docs on the floor thought I was psycho/ fringe woman and that my son was going to die and it was my fault. They completely distrusted the results the CMN had given and in fact did not believe it until their pku screen came back ok.
Praise the Lord that we found the answer and got the heck out of that hospital and transfereed to another close by for care. (It was so bizarre to see 6 grown people come to transport a 4 pound baby on a gernie all hooked up to IV and mointors)
I know if we had not done it, or worse yet, not done it and lied I would be in jail.
I also know that if I would have stayed at the first hospital my baby would have died. (the doc there were complacent just giving him fluids and watching him decline because they were convinced it was a metabolic disorder that lead to death anyway)
We are our childrens only advocates and even thought when ds (& I) were going through the misery of a lousey heel stick I thought it was the worst trauma we would go through, I was wrong.
I would absolutely homebirth again. It was the most peaceful empowering event in my life. I will deny any of the pokes, prods, drugs, test and junk. But I will have the pku screen because metabolic disorders suck. (and no momma wants to admit when you start to see stuff go wrong)
This is just my experience.
Do what works for you and your conscience.
K
Momma to Ebaby
homebirthed, non circ, ap, no vax EVER, bfed, cosleeping, crazy in love with my babe momma


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## heartmama (Nov 27, 2001)

ebaby I am on the edge of my seat girl--what was wrong with your baby? I didn't see it in your post!! Was it a metabolic disorder or something else?

Just as a note we also had a homebirth. Believe me, heel stick or not, when something is wrong with a baby that was born at home, the medical community totally freaks out and it is a bit of a witch hunt to throw the blame for anything and everything back on the parents. We gave birth in a state where homebith was legal and so was our CNM's homebirth practice, and we still caught all kinds of flack when ds was admitted for heart surgery. It is very unfair









Heartmama


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## Peppamint (Oct 19, 2002)

Quote:

_Originally posted by heartmama_
*ebaby I am on the edge of my seat girl--what was wrong with your baby? I didn't see it in your post!! Was it a metabolic disorder or something else?
Heartmama*
Yes, I didn't read what the problem was either! Just curious!


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## ebaby (Aug 22, 2002)

If you can believe it or not it was a simple pyloric stenosis.
The great surgeon that finally we found at the second hospital said because I had so much milk, nursed constantly and the babe was adjusted by a chiro since birth, he did not have the text book projectile vomiting and it was more sublte urp urp urp, but it really played a number on his electrolytes. (hence the ammonia beind so flippin high) He also confirmed that ds would have died had we stayed 12 more hours at hospital 1.
The surgeon said to me "nurse him as long as you possible can. Breastmilk saved this baby."

K


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## earthmama007 (Dec 29, 2001)

Wow incredible! I am always so amazed when I learn something new. I have ALOT of milk too. Are there any signs other than the excessive gas/"urp?"PKU is one of those things that makes me nervous. I do not want to make a mistake but I can't help but have a confusing feeling now because of these stories







:


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## Evergreen (Nov 6, 2002)

We had ours done today and I cried, dh had to hold her and I went into another room! I don't really regret it, she clotted fine despite no Vit K and we waited until there was enough milk in her system for it to be acurate (2 days).


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## MinnieMouse (Nov 19, 2001)

I did a lot of research into all the tests and procedures done on newborns when I was preggo (along with all the stuff they do to preggos!). We planned on having dd in a freestanding birth center with midwives but dd had other plans. Her cord was short and wrapped around her neck so we took an ambulance ride with the midwife across the street to the hospital. I managed to avoid a csection by having a forceps delivery...and dd was in excellent shape!

I'm glad I did my homework beforehand and had a back up birth plan for the hospital. It really made the unexpected shift in plans easier to deal with and led to less questions by the hospital staff. It also helped that they are the "back up" hospital for the birth center and are somewhat used to these requests by now.

We refused the eye ointment, hep b, the insistent nurse who kept waking me up every hour to insist on moving dd to the nursery so I could get "some rest"...argh!...but we got the PKU when dd was 3 days old by the nurse from the birth center. (they do a home visit 2 days later as part of their routine care).

When I was preggo with dd I picked up a Good Housekeeping that had a lengthy article about a family that lost two of their babies to a genetic metabolic disease. It was heart wrenching. The article discussed the push to expand the "PKU" test to a full panel that tests some ridiculous number of diseases...I think it was just under 30...the added cost was about $1-2! Almost all states mandate the PKU...along with a few others tested at the same time...but most hospitals do the expanded tests.

The very next week I called The Birth Center and asked. The midwife on call told me that they only tested for the state mandated ones. So I decided to get a private test done....it was less than $25 and the info was in that article. Well a few hours later the midwife called back. She said she had spoken to one of the nurses (the ones that do the test) and the nurse told her that they did the expanded test and screened for close to 30 different diseases. The midwife actually thanked me for asking !

Is the PKU bureaucratic and state madated...Yes...will it possibly save your child's life...YES!! I know the chances are slim to none that any of our kids would have a + on any of these...but then again it's slim to none that our kiddos would have a reaction to vaxes and most of us are careful with them as well!

My thinking is, "I" can control the situation and how the test is adminstered (ie, who does it) and comfort dd afterwards....for the few drops of blood that they need, this procedure is well worth it in my book!

I couldn't find the article I had read...but a search came up with this site that has a lot of info...a bit mainstream but there is a good amount of stuff to read.

http://www.aboutnewbornscreening.com/

Christine


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## Hera (Feb 4, 2002)

I just wanted to share my crazy PKU story.

My dd was born at home, and the midwife told us about the PKU. She's very non-invasive, and didn't like sticking little babies with needles when not medically necessary. Neither of us have any of the illnesses in the Newborn Screening in our families, so we put it off. At about 2 weeks, we decided dd had a little better handle on things than she had immediately at birth, and better to know than to wonder or wait too long, so we decided to have the midwife do the test. Now, I love my midwife dearly and would have her at every one of my births. But, I was scared and upset about poking my baby and she didn't want to do it....she gave dd a jab with a teeny razor blade and squeezed her foot, dd cried blue murder and we were both shaken for the rest of the day, stayed in bed nursing and apologizing. Well, the test came out a little funny. Nothing majorly wrong, probably non-clinical, but possibly ghastly....We were encouraged to do another test, with a larger sample to be looked at in the hospital lab. We went down late the night we found out, and dd was asleep in my arms. The woman (nurse? tech?) let me hold dd right by the nipple so she could nurse immediately if she woke up, and pricked her foot (the other one, because the first wound was still bruised and owie) with a little clicky blade device. You push a button and a blade pops out to the correct depth. All you have to do is aim in the right place. Dd didn't wake up until the very end, when she yelled a couple times and pooped her diaper. We got to use the little baby poking cradle as a changing table.....

Anyway, the test came back no big deal. If I had it to do again, the only thing I'd do differently is I'd go to the hospital lab for the test, since they probably do this type of thing several times a day without blinking. I don't think I'd want anything violent to happen right after birth though, not until baby has had a chance to snuggle and rest and get used to how the air feels.

Love,
Rebecca


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## Sustainer (Sep 26, 2002)

I refused the PKU. I don't think it's worth the puncture wound. What a way to welcome a baby into the world - with pain. Plus, any puncture wound can become infected. You are bypassing the body's defenses and opening a direct pathway for bacteria into the bloodstream.


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## Sustainer (Sep 26, 2002)

Here's what Dr. Mendelsohn has to say about it:

"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.

"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.

"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.

"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.

"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.

"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."

--Robert S. Mendelsohn, M.D.

_How To Raise A Healthy Child... In Spite of Your Doctor_
http://www.powells.com/cgi-bin/bibli...3-0345342763-0
http://www.amazon.com/exec/obidos/tg...glance&s=books


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## cobluegirl (Nov 20, 2001)

Thanks Devrock for pointing this thread out..will point out to the rest here the thread in Vaccinations where we have been discussing the pku as well.

http://216.92.20.151/discussions/sho...728#post387728

check it out for more reading.


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## The Lucky One (Oct 31, 2002)

I disagree with Dr. Mendelsohn's data. Every source I could find says that the incidence of PKU in the US is much higher than he stated. The average incidence of PKU in live births in the United States is 1:15,000, not 1:100,000. Big difference.


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## lorijds (Jun 6, 2002)

Edited because I posted twice!


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## lorijds (Jun 6, 2002)

We have had almost 2000 babes in our facility since it opened 20+ years ago. We do the PKU (which only tests for a few tests in our state, including hemoglobin abnormalities such as sickle cell). We have had 1 baby test postive for PKU, 2 for hypothyroid, and one for sickle cell.

I HATE doing the vit K, hep B, and the eye ointment, and definately try to get moms and dads to understand the need (or lack thereof) for those things, in the hope that they will not do them (barring any risk factors, of course). However, I recommend the PKU, and I hardly EVER have any child cry during the test. They cry MUCH more when I get their foot prints for the baby books.

There is a certain technique to it, though. Babies SHOULD nurse during the procedure; research shows that they don't have as great a degree of a change in vital signs (signaling pain and distress) and don't cry nearly as long (if they cry at all). I find it hard to believe that one negative stimulation during one nursing session is going to create a negative association with the breast.

So, the babe should be put to the breast, in the cradle hold, with her foot being the lowest part of her body (meaning, the leg and foot should be lower than her heart). A warm wash cloth should be held to the area for several minutes, and the room itself should be comfortably warm. The washcloth should be warmed up a couple of times and re applied for a total of 3-5 minutes. The area should be cleaned with alcohol or some other agent and allowed to dry. If the alcohol is not dry, not only can it taint the sample, but it STINGS! Then, using a tenderfoot (a device much like the lancets used to prick fingers for finger-sticks in the testing of blood sugar for diabetics), the foot should be pricked. Then, hold the foot down, with the warm washcloth wrapped around the lower leg. NO SQUEEZING!!!!!!!!!!! If the foot is squeezed, it can cause several problems. First, this becomes traumatic, because it hurts and is scary for the babe. Second, you do tissue damage, and can contaminate the sample with serous fluid. Also, the body senses that damage is occuring, and thus sends CLOTTING factors to the area. Rather, simply hold the foot low, holding just firmly enough to control it (meaning that the babe doesn't kick around and then the blood drop falls off). If you are patient, a blood drop will form within a few seconds. Continued patience will result in enough blood to fill the 5 or so circles on the blotter paper.

In nursing school, I was told to squeeze to get the sample. I learned the above technique from a nursery nurse. Before I learned it, I HATED doing the home visits, because I knew it would end in mom, babe, me, and possibly dad crying. Now, I don't mind at all. I have done this probably 50 times in the last two years, and have only had one of those children scream bloody murder (though, incidentally, the mom refused to nurse during the stick, she made dad hold him--I wonder if he would have screamed so if he would have been nursing). All the other babes either let out a little squeak and then continue nursing, or they don't cry at all, they just continue nursing.

I really think that this test does more good than harm. PKU *is* rare, but devastating when it does occur. Hypothyroidism as well. Done correctly, the PKU is no more uncomfortable to the babe than changing the diaper or strapping her in a car seat. My kids cried more whenI wiped their bums with a cold wash cloth (for lack of facilities to use a warm wash cloth) than the babes do when I do their PKU.

I really do recommend it. BUT, as a parent, it is and should be your right to refuse such a test, and that should be respected.

Oh, and in regards to the heart disorders, well, yes, a heart defect is common, depending upon how "defect" is defined. I would say that in my experience, 1 in 50 babies have a heart defect--a simple beniegn murmur. In the absence of other symptoms (shortness of breath, funky color, trouble nursing, lack of weight gain, lethargy), it is not a problem, though theoretically it *is* a defect. Does the statistic quoted mean defects that cause morbidity and mortality, or does is refer to *all* abnormalities?


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## heartmama (Nov 27, 2001)

lorijds--from my research, one out of 100 infants is born with a cardiac defect. 1 in 5000 will have a defect severe enough to warrant heart surgery.

Statistically, even with the most compelling PKU stats ( being 1 in 15,000) a baby is 3 times more likely to be born with a serious cardiac defect than with PKU or a similiar metabolic disorder.

A stethoscope will not betray a variety of complex cardiac defects at birth. And with some of the more complex cardiac defects there are no symptoms at birth. The only way to diagnose them is with an ECG (sonogram).

My point in bringing this up wasn't to seriously suggest we do ECG's on all newborns. With serious heart defects appearing in 1 out of 5000 births, it is reasonable to assume your baby is fine. And nearly all parents and doctors do assume that.

My point was that since we assume babies don't need ECG's to test for heart defects, it is wrong for doctors (or other parents) to scrutize a parent who decides not to test for PKU either.

It is just hype, not good medicine, to view it any other way. If we aren't going to obsess over testing for rare defects, let's not argue over whether we should test for really really rare defects.

If parents want the PKU test, or any other test, it should absolutely be available to them. And if they think their baby is healthy and the tests are unnecessary, lets remember that statistically....they are right!

Heartmama


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## ebaby (Aug 22, 2002)

heartmama :

1 in 5000 will have a defect severe enough to warrant heart surgery.

Golly that one strikes me as very high! Is that right?









If so then WOW!


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## Kat20 (Jan 8, 2002)

I'm wondering if 1:100,000 was the incidence of PKU back when Dr. Mendelsohn wrote the book. This made me think back to something I read in "Male Practice: How Doctors Manipulate Women." Dr. Mendelsohn was discussing how he believed that the increase in Down's Syndrome and other genetic diseases was related to increase in the use of X-rays; in other words, he did not believe that there was any such thing as "tired eggs" in older women.


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## heartmama (Nov 27, 2001)

ebaby, this is a quote from a book on heart defects in children:

"Approximately 1 out of every 100 babies born has a heart defect. Fortunately, about 1/3 of the defects are so mild they require no treatement at all."

another quote:

"Of all babies born with defects, that is about 8 out of one thousand babies, 3 or 4 will need treatment before their first birthday, and 2 or 3 of these will have critical problems that require emergency treatment soon after birth".

So I guess my estimate of 1 one out of 5000 needing surgery was actually too conservative. It is more common than that.

The reason this stat is surprising (in my experience) is because heart defects are invisible to the public. Unlike many other conditions, there is usually no way to tell that a child you see at the park or the store has a major heart defect.

Heartmama


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## lorijds (Jun 6, 2002)

Here are some websites that might interest you (in regards to Rhogam):

www.withwoman.co.uk/contents/info/antid.html

http://gentlebirth.org/archives/genpcare.html#RhoGAM


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## ebaby (Aug 22, 2002)

Thanks!


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## Juelie's Mom (Nov 19, 2002)

In our state the test is not mandatory, but they like to do it twice. Once about 3 days after birth and once a week after that. Usually the first one is innaccurate, which is why they do the second one, because it most time cannot be detected by 3 days of age. So we thought "what is the point of the first one then?". We had the test done when she was 2 weeks old b/c there are things it tests that can be treated if you catch them early enough. I do not regret getting the test, though my baby did scream like crazy and that was really hard!









Holly


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## Teensy (Feb 22, 2002)

I not only got the required PKU test at the hospital, I also ordered a more comprehesive test since my state (SC) only tests for a few disorders.

I read this article (yeah, Parenting magizine, I know) -

http://www.parenting.com/parenting/a...0,2852,00.html

and did research and decided to have my baby tested for more disorders than the hospital normally does. I ordered the test card from Baylor online at
http://www.bhcs.com/HealthServices/WandC/metabolic.htm
then took my baby to the doctor's office at the correct time (one week, maybe, I forgot). A very quick heel stick - I doubt he cried for all of ten seconds.

I can't imagine living with myself if my baby became brain damaged or died simply because I thought a heel stick was too invasive or painful. I will not rely on my state's minimum test if I have another baby, I will order a more comprehensice test then also.


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## Sustainer (Sep 26, 2002)

I think if you're going to have blood drawn anyway, you should definitely have as many tests as possible done on that blood, to make it worth the trauma to the child. I think every mother should make her own decision about whether the blood test is worth it, and the mother's wishes should be respected.


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## lorijds (Jun 6, 2002)

Here are the stats for the state of Kansas, in regards to the PKU testing done in the month of January.

Kansas tests for PKU, galactosemia, hypothyroid, and hemoglobin anomolies (like sickle cell).

3912 tests were performed in January in the entire state.

The results were :

0 PKU
85 hypothyroidism
1 galactosemia
104 abnormal hemoglobin types

Hope this helps you decide one way or another in regards to having the test performed!

Lori


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## OnTheFence (Feb 15, 2003)

Hi, I voted yes but dont regret it.
With my daughter I was young and dumb and didnt know much about PKU. With our son, he was adopted at birth and we didnt have it done until he was a month old. With our youngest we had it done when he was two weeks old.


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## veganmamma (Sep 10, 2002)

We did the PKU and truthfully, i regret it. If you decide to do the test, i would say yes, have them run as many tests as possible, but remember that means they draw extra blood. YOU can do the PKU test yourself and it is less abusive.babies should NOT cry or have bruises on their feet aferward. that is a sign of a bad tester. use a warm, wet compress on your baby's foot for 20 minutes before the test. stay in the bathroom and keep heating the cloth- i used 2, heating one and using one and then switching. remember that these people work fo r you, you don't owe them any convenience. dabbing at the paper makes the results inconclusive. if you see them doing that, ask for some one else. it will mean one more poke, but it is better than coming back and having to do it all over again. they should not have to squeeze the foot very much to get blood out. if your baby cries as they sqeeze it, again, end the procedure immediately and ask for someone else. if you want to do it yourself, they should let you. say you did it with your first or something. you can even ask them do use the poker if yoou're squeamish and then do all the squeezing and blotting yourself. the key is to get a pretty big bubble of blood on the baby's foot and then dab it once to fill the circle on the paper. if the foot is sufficiently hot from the compresses it should be easy enough. another poke is less painful than bruising from over squeezing. the people who are the best at giv ing this test are at children's hospitals.

if i decide to do the screening with my next child, i wil only do it if i can do it myself.
lauren


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## frogertgrl (Nov 28, 2002)

Voted 'no' and do not regret it in any way, shape or form.

Once I read the politics behind this test, and how much funding goes toward states who get as many babies PKU'd as possible, I was skeptical about the whole thing.

Plus, in CA, this used to be done with urine and many of the screens done with PKU could be done with urine but are not.

When I was pregnant, I knew no one was sticking my newborn with anything, rubbing him off, suctioning, circ'ing, etc.

Then I gave birth. And anyone who even tried to come near my baby with a needle or knife, however small, would have been murdered.

Ever grateful I accepted the liability and put an 'X' next to 'Decline'.


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## Sustainer (Sep 26, 2002)

ITA. Of course in my state, there is no decline box you can check -- the PKU test is mandated for every child born in a hospital by state law. If you try to refuse, you can lose custody (and then they do the test anyway).

I'm glad I had a homebirth!!


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## veganmamma (Sep 10, 2002)

good for you, frogertgrl! i won't do it again. you rock! way to be brave. incidentally, 2 nites after i did the pku, the hospital called at 9:30 at nighta nd i frantically answered (i had caller id) thinking she had some rare disease or something, and the guy took his sweet time getting around to the fact that it was unclear if my daughter had my last name or dp's. WTF????? he said very slowly, "this is so and so with kaiser calling in regards to the newborn screening you did earlier this week... now... i'm looking at the sheet.. and... i'm just... wondering what your child's last name is." AAAHHHHHHHH!!!! as if removing the bandaid and getting her blood all over my shirt weren't enough trauma for the evening!!

L


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## Sustainer (Sep 26, 2002)

What an insensitive twit! Didn't he know you were having a heart attack the whole time?!


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## veganmamma (Sep 10, 2002)

Apparently not!!


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## Quaniliaz (Oct 11, 2002)

Just a warning:

I don't regret having the test done on my dd, however, I do regret HOW it was done - had I not been in shock I think I would have punched the nurse who did it.

DD was born at home, so we went in when she was four days old to have the test done in the hospital lab. The nurse told me it was "easier" to draw blood, rather than do the heel stick and then took about five minutes trying to do so. I didn't nurse while she was doing this, and dd was sooo sad







It is the most awful thing that had ever happened to her in her short life - we made all sorts of efforts to make her entrance into the world the least traumatic as possible - and then this!! It's still the worst thing that has happened to her - and I totally could have stopped it from happening!! grr....

So - make sure you get someone who does this often, and compassionately!!

Marisa
Sage 3 mos.


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## brookelynnp (Jan 1, 2002)

We did the pku test at home with our midwife and it was no big deal for ds. The big deal was when he came back positive for a thyroid issue and theywanted us to immediatly put him on meds bc he could have brain damage if not caught by 6 weeks and remedied. We opted to go right to the childrens hospital and find out the truth before subjecting ds to undeeded meds. We had to pay a lot more for not following hmo protocol but we found out immediatly that he just carried his t4 on a different protein which did not show up on the initial pku testing. I would recommend it, some of the possible outcomes are time sensative.


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## Justice2 (Mar 18, 2003)

DD went to a child's birthday party last year and there was this beautiful little redheaded girl there that was about three years old. She really was one of the most beautiful children that I had ever seen! I began talking to her mother and she told me that her daughter had PKU. This disease is not controlled easily by diet. I read that in another post. This disease is AWFUL. This little girl had spent most of her three years hospitalized cause simple colds could kill her. If she got an infection, she couldn't take normal medicines. She could have NO PROTIEN whatsoever. EVER. She had no skin pigmant. She couldn't eat cake and ice cream with the other children. Yes, this disease is rare (although not as rare as you would think). Her mother laughed and said "that's my BILLION dollar baby". Her formula, cause she COULD NOT BREASTFEED, was over $200.00 a can. It was amazing to me that this seemingly healthy little girl was so very UNHEALTHY. It was great to see her running and playing though! I am sorry. I didn't mean to rant. I just know that any children I have will endure the heel stick (my dd had it done several times due to her prematurity) and I will be there to comfort them during and when it's over. I am not scared that any of my children will have this (or any other) disease, but it isn't impossible either. I live in a town of MAYBE 500 people and I was surprised to meet someone with such an unusual disorder. That's just my feelings on it though. I might have declined the PKU (no one can MAKE you take any test) had I not know this little girl. JMO.


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## eilonwy (Apr 3, 2003)

In PA, they do a whole bunch of screenings and I only vaguley remember signing a form for it..

I found out a few weeks later that my son has G-6-PD deficiency, which means that he can't take sulfa drugs, eat fava beans, or be exposed to mothballs, and that while I'm nursing I have to be extra careful about these things. (I've actually got a list of the medications/foods/chemicals he's not allowed to have/be exposed to.) I was glad to know it, because it explained a few things about me (I always got sicker after taking Bactrim than before I took it) and he's got lots of older relatives who use mothballs and it could have potentially done my son serious harm.

Out of curiosity.. why is this a question? What's wrong with newborn screenings, even if you're not in a "high-risk" group?


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## cobluegirl (Nov 20, 2001)

My whole issue with it is usually that they subject the baby to more trama then necessary for such a little thing. I mean they just came out of a nice warm snug environment to be inundaded with all kinds of things if we let Dr.'s do it.
The PKU is not bad in itself but the fact that they do 2 of them, when the first one isn't even accurate, which is why they do the second one days later...is cruel IMO.


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## AutumnMoonfire (Dec 29, 2001)

I was born late in 1966, before NYS was testing for thyroid disorders...I am COMPLETELY hypothyroid, my parents did not know what was wrong with me other than that I wasn't acting like their first two...around six weeks of age they were told about a doc in a nearby city and my brain was saved.

I also know a woman who's son has PKU and it was picked up in the screening and other than some ADHD issues the boy is fine.

As you can imagine I am rather adament about these tests









#1 if you choose to wait a week be aware that you may still want the test done by a nursery nurse not a lab tech. Do some dectective work...find out what time of day they do the tests and go watch them...blatently say(example)" I want the nurse with the curly brown hair to do this test" if she's the one who has been doing all the babies with a minimum of screeching on the babies part.

#2 only do veinipuncture if there are other labs pending that use this as a collection technique. Babies are not easy to get a vein in. the lab techs wanna try it because it is harder for them to do heelsticks. they plain old are not used to them.

#3 If you get a positive, hold them off and do your research and get your baby to the appropriate specialists. If you shag it you will know where you need to go in 24-48 hours. If you are too fogged head for a regional childrens hospital. you will not be sorry you did. You would go to a children's hospital if it was a cardiac proceedure why not for this?

I hope you never face a positive test.

NYS also tests for HIV in the panel...only problem is it's a defacto test of mom!!!


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## myrrhmaid (Aug 20, 2002)

I didn't PKU test my ds. My midwife at the time wasn't into it and I readily accepted what her take was on it.
With my dd, my midwife came to the house and did it herself. If I had to subject my child to a careless, bumbling medical personnel, I would have declined the test. But since it was my midwife, and done in my home, I felt better about it being done & I'm now relieved to know that her thyroid & other things they test for are normal.
PKU test is only valid when done after baby has had breastmilk for 48 hrs. (not colostrum)!
I didn't see this info in any of the postings and this is critical. The test isn't even valid if your baby hasn't had the chance to digest breastmilk for 48 hrs. Milk may take 3 days to come in.


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