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Did you all do the PKU?

post #1 of 30
Thread Starter 
Why or why not?
post #2 of 30
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.
post #3 of 30
We did it, too ... for the same reasons as NordicMamma.
post #4 of 30
Thread Starter 
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...
post #5 of 30
We did it. I think he was a week old.
post #6 of 30

bs"d

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.
post #7 of 30
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
post #8 of 30
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.
post #9 of 30
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.
post #10 of 30
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.
post #11 of 30
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 stil 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.
post #12 of 30
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!
post #13 of 30
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).
post #14 of 30
We did one 5 days after birth and after my milk had come in.
post #15 of 30
Thread Starter 
Is it too late now? Genna will be 3 weeks old on Thursday.
post #16 of 30
I would ask your midwife or doctor to see if it's too late. Good luck!
post #17 of 30
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...
post #18 of 30
Thread Starter 
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.
post #19 of 30
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.
post #20 of 30
Thread Starter 
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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