Will you do a PKU test for babe? - Page 4

[alegna]

Originally Posted by Quirky

Another disease commonly tested for, cystic fibrosis, affects 1 in 2000 white babies.

I've never seen a screen that included CF.... as far as I knew they did a sweat test for CF.

Went and looked it up- interesting. The Pediatix includes it. Learn something new every day....


-Angela

[ThreeBeans]

Um, yeah, of course. Not detecting PKU, can kill your baby or leave him or her severely brain damaged. I cannot fathom why someone WOULDN'T do it.

[alegna]

Originally Posted by ThreeBeans

Um, yeah, of course. Not detecting PKU, can kill your baby or leave him or her severely brain damaged. I cannot fathom why someone WOULDN'T do it.

It's a statistical analysis. I was quite comfortable with our decision not to test dd.



-Angela

[ThreeBeans]

Originally Posted by alegna

It's a statistical analysis. I was quite comfortable with our decision not to test dd.



-Angela

I don't understand why. Minimal risk, huge gain. It's not like vaccinations; you aren't putting anything potentially harmful in your child. But if your child has PKU, and you DON'T detect it, the odds are 100% that it will destroy your child's life. Why would you want to play with thta?

[Quirky]

Originally Posted by alegna

I've never seen a screen that included CF.... as far as I knew they did a sweat test for CF.

Went and looked it up- interesting. The Pediatix includes it. Learn something new every day....


-Angela

yep, it's on the of the core panel recommended by the American College of Medical Genetics

http://www.savebabies.org/diseasedescriptions.php

[WinterBaby]

Originally Posted by Natural Mommy*J

it pricks the bottom of the little baby's feet multiple times, and most of them get very distressed.

I think this is all about technique - my babe spent a couple weeks in the nicu and had his little heels lanced so many times I'm *still* lamenting the scarring a month later, lol. Every heel stick I witnessed neither distressed him much nor took more than one stick to fill up whole little tubes. But definately let someone lance more than once before having them squeeze the foot - that is both painful and ineffective. A second lance is way less distressing. (But done right, you shouldn't need that.) And I think weighing whether or not to do the test is more about the cost v. benefit analysis we all consider than the sheer statistics of it being rare.

[alegna]

Originally Posted by ThreeBeans

I don't understand why. Minimal risk, huge gain. It's not like vaccinations; you aren't putting anything potentially harmful in your child. But if your child has PKU, and you DON'T detect it, the odds are 100% that it will destroy your child's life. Why would you want to play with thta?

At the time TX was only testing for 4 or 5 things. All were highly unusual. I knew what warning signs to look for for all of them. The slight chance of finding a very rare condition that also has a genetic component (which we do not have any genetics that predispose our children to) wasn't worth any pain to my child. It's really that simple. I don't think that people that made a different choice did anything wrong, it just wasn't worth it for us.

-Angela

[ThreeBeans]

I guess I still don't understand, but I certainly respect your right to make your choices

[alegna]

As a rule I don't do random medical screenings for anything. Just my general mentality about health care.

-Angela

[mamaverdi]

Here is what TX screened for in 2004: PKU, Galactosemia, Congenital Hypothyroidism, Hemoglobinopathy, and Congenital Adrenal Hyperplasia

1) Positive family history rules in consideration of certain diseases. Negative family history does NOT IN ANY WAY rule out the possibility of an IEM, endocrine, or blood disorder.

2) Not all are inherited. CH for instance is only inherited 20% of the time.

3) Signs and symptoms may be so vague as to not be diagnosed until permanent damage is done or the child dies.

[alegna]

I was comfortable with the stats. Still am. Wouldn't do that screen now. I may do an expanded one. I may not.

-Angela

[Lynnseedoil]

We did it. DD nursed through the poke and didn't even flinch.

[mamaverdi]

Nevermind.

[DavinaT]

Yes, i would get this done. too risky not to.

But in reading the posts, one thing really puzzles me.
Why oh why do he peds or midwives not use a little topical aneasthetic on the baby's heel before doing the lance???
That is standard practice here unless there is a really good reason not to - rare allergy to topical gel for example.

[UUMom]

In MA, the newborn blood screen (PKU test) sceens for over 20 diseases.


http://genes-r-us.uthscsa.edu/resour...n/overview.htm

Just a sample.

[CMcC]

Yup, I got it done with all 3 of my children. I agree with the others. You don't put any vaccine in, but get alot of benifit from doing it.

Growing up, my best friend's brother and sister both had PKU. Her older sister almost died because they did the test too early. I believe the hospital had to pay her a fixed amount until she turned 18 because they messed up. Same with her younger brother, they tested too early and missed it. Both were never quite all there.... they had to take special classes in school.

[wombjuice]

I read above that this test can be ordered and done at home...must it be done by a midwife or other certified professional, or can the parents do the test and then send it off?

Also, does anyone have any information on this test for countries other than the US? I've been googling for info about the "PKU test" in Ireland and the UK, and not finding much. Could it be called something else over there?

[Tofu the Geek]

Here's what the individual provinces screen for in Canada http://www.savebabiescanada.org/Province.htm

I am glad this thread came about as I had no idea they screened for anything more than PKU. I am surprised by the variance within Canadian provinces. Both of my DD's were screened, but being born in two different provinces, I have one that was screened for only a few things and one screened for many.

[pjs]

We will have the screen done.

[alegna]

Originally Posted by feminine_earth

I read above that this test can be ordered and done at home...must it be done by a midwife or other certified professional, or can the parents do the test and then send it off?

The pediatrix said an MD must order....

-Angela