Did you all do the PKU? - Mothering Forums
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#1 of 30 Old 08-05-2005, 01:50 AM - Thread Starter
 
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Why or why not?

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#2 of 30 Old 08-05-2005, 07:01 AM
 
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We did. It is one of those diseases which can be controlled when detected early but is devastating if it isn't caught in time.

Drawing blood was no fun, but for me I thought it was worth it.

I would have tested for Cystic Fibrosis too if they had offered the test here.
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#3 of 30 Old 08-06-2005, 07:56 AM
 
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We did it, too ... for the same reasons as NordicMamma.

At-home mom to a teenager, an infant, and three in between!
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#4 of 30 Old 08-06-2005, 05:13 PM - Thread Starter
 
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We haven't done it. Ugh, I feel like I didn't do it for the wrong reasons though. I didn't want to hurt her. It is sooo rare though. But still...

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#5 of 30 Old 08-07-2005, 03:38 PM
 
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We did it. I think he was a week old.
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#6 of 30 Old 08-07-2005, 08:36 PM
 
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I did it, too.

My baby had to have a heel prick anyway to type her blood, because the hospital I went to for a Rhogam shot after my UC required the baby's blood to be typed in their own blood bank before administering the Rhogam (so they wouldn't have accepted my results from Eldon cards using her cord blood anyway). So we just did the typing and the newborn screen (PKU) at the same time from the same heel prick. It is heart breaking. She screamed; my first did, too.

I don't have a problem with most testing. It's just that one must be informed in the case of a bad result, as some of the tests have false positives/etc. that might lead to bad medical advice, etc.
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#7 of 30 Old 08-08-2005, 01:38 AM
 
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Quote:
Originally Posted by NordicMamma
We did. It is one of those diseases which can be controlled when detected early but is devastating if it isn't caught in time.

Drawing blood was no fun, but for me I thought it was worth it.

.
This pretty much sums up why we did it.

Shay

Mothering since 1992...its one of the many hats I wear.
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#8 of 30 Old 08-08-2005, 02:35 PM
 
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I didn't state why we did it, I think the benefits of the PKU are worth taking it. A heel stick can piss off the baby, which I hate, but there aren't really any risks. Especially if breastfeeding is established before you do the test, then it shouldn't interfere with breastfeeding and you can also use breastfeeding for comfort during the test.
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#9 of 30 Old 08-09-2005, 01:41 PM
 
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We did it.

It was no big deal - a quick heel prick, then i nursed immediately and he fell right asleep.

I felt there were no risks and I am glad we did it. One less thing to worry about.
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#10 of 30 Old 08-09-2005, 02:22 PM
 
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Of course we did it. They even have expanded screening in my state which tests for over 50 other metabolic diseases. The chances are slim of your baby having any of these disorders, but a prick in the heel is all it takes to find out. Imagine the pain your little one and your family would have to endure if gone undetected? Your baby is going to get plenty of bumps, cuts and bruises when discovering the world around them. They are mighty resilient and determined as the rest of us. They recover quickly, especially if you nurse during or after.
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#11 of 30 Old 08-09-2005, 02:28 PM
 
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because of my history with thyroid issues and since one of my dds tested + for hypo, we not only do the initial test, but a blood draw 1 month after birth. I discovered that the heel prick might not be as accurate as desired. Having blood drawn so soon after birth can be misleading because the baby is **** lprocessing the placental blood in their system ,and like in my case, her results were fine at the first test, but I wanted to be sure- so a full blood draw was done, and sure enough...the PKU was wrong.

Mama to 5 babies. UCer, too!
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#12 of 30 Old 08-09-2005, 02:40 PM
 
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In most states the PKU heelprick tests for a lot more than just PKU. They screen for a lot of other disorders as well. There is a mama on this site whose son developed something called Krabbe's Disease which has been devastating for their family (although he is getting better, after a stem-cell transplant and many months of hospitalization). In the mama's journal she described how it is possible to include screening for Krabbe's in the routine newborn screening, but most states don't test for it yet. If they had known earlier that their son had Krabbe he could have received a transplant much sooner, before he had suffered any damage for the disease (it causes demyelinization in the brain, IIRC).

I would not blow off this screening. It's a momentary hurt but it could save your child's life!
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#13 of 30 Old 08-09-2005, 02:57 PM
 
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They did two heel-pricks... one in the hospital before the 48-hour period and one later. The first one (in the hospital) was by a mean day-shift nurse who had dh stick a gloved finger, covered with syrup into ds's mouth. Ds wailed a little bit then calmed down. I however was horrified. We had the option of having the second (post-48-hour) heel-prick either in the lab or by a home health nurse - we opted for the latter. This visit was AWESOME. She came by, conducted a full exam of ds, a full exam of me (yay!), did the heel-prick while I was nursing. And because she was also a lactation consultant, she gave me some tips with BF'ing and sleeping (we had had a torturous night just prior to to her visit).

Jennifer, Naturopath and mom

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#14 of 30 Old 08-09-2005, 04:47 PM
 
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We did one 5 days after birth and after my milk had come in.
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#15 of 30 Old 08-09-2005, 05:30 PM - Thread Starter
 
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Is it too late now? Genna will be 3 weeks old on Thursday.

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#16 of 30 Old 08-09-2005, 05:46 PM
 
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I would ask your midwife or doctor to see if it's too late. Good luck!
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#17 of 30 Old 08-09-2005, 05:53 PM
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Quote:
Originally Posted by MamanFrançaise
We haven't done it. Ugh, I feel like I didn't do it for the wrong reasons though. I didn't want to hurt her. It is sooo rare though. But still...
we did the pku, but i didn't do the vit k shot and feel kinda the same as you do on this...
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#18 of 30 Old 08-10-2005, 12:26 AM - Thread Starter
 
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That's so interresting. We did the vit K.

I called my midwife and she's coming over tomorrow morning to do the heel prick. Ugh, I hate to hear my aby cry.

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#19 of 30 Old 08-10-2005, 12:53 AM
 
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I also didn't do the vitamin k shot or the eye gel. There's no need for the gel if you had a clean pelvic exam at your first prenatal check up. The vitamin k shot is to help the baby's blood clot if (s)he can't to do so on his/her own before the 8th day of life.
Your baby will be just fine because (s)he has such a caring and sensitive mommy.
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#20 of 30 Old 08-10-2005, 01:47 PM - Thread Starter
 
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Well we did it. I made DH stay home from work and he held her while it was being done. I took our oldest DD outside because I couldn't stand to hear baby crying like that and DD was getting freaked out, too.

Sheesh, there are much more terrible things in this world that could happen and I get freaked out over a heel prick. I'm such a suck.

But she is fine now and sleeping it off and I look forward to getting the card in the mail saying everything is ok.

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#21 of 30 Old 08-10-2005, 02:09 PM
 
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When DS got his heel prick at 4 days old I swear I cried harder than he did. DH had to hold him.
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#22 of 30 Old 08-10-2005, 02:46 PM
 
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No. The old geezer ped. who was on call when dd was born said it wasn't needed. He said kids with that have "a look" about them and described it me. She didn't look like that and I was so glad not to prick her.

Also, we skipped on the vitamin K and eye goop.
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#23 of 30 Old 08-10-2005, 09:41 PM
 
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We did it and also had heel pricks the next three days to check bilirubin levels (she was really jaundiced). All told, due to various screw-ups, she was pricked 6 times in 4 days. I insisted on holding her so I could comfort her, but it broke my heart and I cried too.

Shana

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#24 of 30 Old 08-11-2005, 07:40 AM
 
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BTW, in Sweden they no longer do the heel prick. The now take blood from the hand. Supposedly it hurts less. Don't ask me how they 'know' this - it certainly didn't LOOK like it hurt less.
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#25 of 30 Old 08-11-2005, 10:27 AM
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Quote:
Originally Posted by MamanFrançaise
I'm such a suck.
Maman, you crack me up. Seriously, though, glad DH came to provide some support...

Babe has her 2 mo "well baby" appt scheduled, and I think we're doing all the shots this time around and I am a TOTAL suck, too, and now am panicked cuz DH won't be able to be there (sigh).

(PS Please no big anti-vax responses, TIA)
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#26 of 30 Old 08-11-2005, 02:17 PM
 
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Quote:
Originally Posted by philomom
No. The old geezer ped. who was on call when dd was born said it wasn't needed. He said kids with that have "a look" about them and described it me. She didn't look like that and I was so glad not to prick her.

Also, we skipped on the vitamin K and eye goop.

I'd like to avoid this if possible, but my research seems to be going for it right now... what kind of a "look" do PKU kids have?

Also, did anyone know that you can get yourself and dh tested to see if you are carriers? Then you only have to worry if both of you are carriers. I'm thinking about doing that...
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#27 of 30 Old 08-11-2005, 03:34 PM - Thread Starter
 
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Quote:
Infants with PKU appear normal at birth. Many have blue
eyes and fairer hair and skin than other family members.
Quote:
About 50% of untreated infants have early symptoms, such as
vomiting, irritability, an eczema-like rash, and a mousy
odor to the urine. Some may also have subtle signs of
nervous system function problems, such as increased muscle
tone, and more active muscle tendon reflexes. Later, severe
brain problems occur, such as mental retardation and
seizures. Other commonly noted features in untreated
children include: microcephaly (small head), prominent
cheek and upper jaw bones with widely spaced teeth, poor
development of tooth enamel, and decreased body growth.
This is all that I found on the "look" of PKU.

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#28 of 30 Old 08-11-2005, 03:46 PM
 
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Quote:
Originally Posted by Persephone
Also, did anyone know that you can get yourself and dh tested to see if you are carriers? Then you only have to worry if both of you are carriers. I'm thinking about doing that...
But--as described upthread--the "PKU screen" actually screens for way more than just PKU. Depending on your state, it screens for as many as 30 other serious and life-threatening metabolic disorders. You would probably have a hard time convincing a doc (and your insurance) to screen you and your husband for all of those traits, for no compelling reason other than to avoid a heel prick for your child.
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#29 of 30 Old 08-11-2005, 06:19 PM
 
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Great! Glad to hear you all survived
Happy mothering...
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#30 of 30 Old 08-14-2005, 03:40 PM
 
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We did it (MW came to house to do it) for DS and also DD - it's required by our state and didn't want to fight any battles for not doing it - felt a heel prick is no big deal, and also was informed of a big possibility of getting a false positive, wwhich we did, and so we had to go for more blood tests - a real blood test by a phlebotomist (sp?) and get the blood sent out for more intense genetic testing. He had the false positive for galactosemia, and we were pretty sure, as our MW advised us, that it was due to the warm summer air (the heat affects the blood sample) and didn't really worry too much, but it was a bit nerve-wracking all the more.

It was cool to meet the academic geneticist, though.

Also, we learned that our son is a carrier for a more mild form of galactosemia (the Duarte version), which means that one of us is the carrier. In the end, it is sort of meaningless because the Duarte version isn't very much a serious genetic disorder - treatable with a special diet (soy formula), or even just continuing breastfeeding, as the treatment for this less serious version of galactosemia is controversial. It only matters anyway if his partner has the gene as well.

Which leads to the question of genetic disorder testing in general - what are you going to do with the information? One must be knowledgable on the treatments and not trust only what one person says!

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