Will you do a PKU test for babe? - Page 3 - Mothering Forums

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#61 of 86 Old 03-19-2007, 07:30 PM
 
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Originally Posted by Quirky View Post
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
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#62 of 86 Old 03-19-2007, 07:33 PM
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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.
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#63 of 86 Old 03-19-2007, 07:37 PM
 
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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
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#64 of 86 Old 03-19-2007, 07:39 PM
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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?
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#65 of 86 Old 03-19-2007, 07:41 PM
 
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Originally Posted by alegna View Post
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

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#66 of 86 Old 03-19-2007, 07:49 PM
 
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Originally Posted by Natural Mommy*J View Post
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.
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#67 of 86 Old 03-19-2007, 08:20 PM
 
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Originally Posted by ThreeBeans View Post
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
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#68 of 86 Old 03-19-2007, 08:44 PM
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I guess I still don't understand, but I certainly respect your right to make your choices
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#69 of 86 Old 03-19-2007, 08:54 PM
 
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As a rule I don't do random medical screenings for anything. Just my general mentality about health care.

-Angela
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#70 of 86 Old 03-20-2007, 01:12 AM
 
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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.
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#71 of 86 Old 03-20-2007, 01:20 AM
 
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I was comfortable with the stats. Still am. Wouldn't do that screen now. I may do an expanded one. I may not.

-Angela
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#72 of 86 Old 03-20-2007, 01:23 AM
 
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We did it. DD nursed through the poke and didn't even flinch.

It turns out that moderation is the key to good parenting.  Too bad we aren't allowed to talk about that here.

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#73 of 86 Old 03-20-2007, 02:40 AM
 
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Nevermind.
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#74 of 86 Old 03-20-2007, 08:33 AM
 
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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.
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#75 of 86 Old 03-20-2007, 09:48 AM
 
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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.
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#76 of 86 Old 03-20-2007, 10:08 AM
 
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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.
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#77 of 86 Old 03-20-2007, 10:12 AM
 
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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?

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#78 of 86 Old 03-20-2007, 10:15 AM
 
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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.

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#79 of 86 Old 03-20-2007, 11:47 AM
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We will have the screen done.
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#80 of 86 Old 03-20-2007, 12:04 PM
 
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Originally Posted by feminine_earth View Post
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
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#81 of 86 Old 03-20-2007, 12:33 PM
 
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my midwife did it in my home.

It turns out that moderation is the key to good parenting.  Too bad we aren't allowed to talk about that here.

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#82 of 86 Old 03-20-2007, 02:41 PM
 
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my midwife did it in my home.
Mine too. I was able to nurse the babies while it was being done.
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#83 of 86 Old 03-20-2007, 09:55 PM
 
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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?
Anyone with prescriptive privileges may sign the order for the test. The parents can actually do the test themselves and send it. But it needs to be signed.

Quote:
Originally Posted by feminine_earth View Post
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?
www.savebabies.org Contact Jill and ask her. Screening is NOT widely available yet from what I understand.
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#84 of 86 Old 03-21-2007, 11:16 PM
 
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Originally Posted by alegna View Post
I've never seen a screen that included CF.... as far as I knew they did a sweat test for CF.
States vary in their panel of disorders they screen for. More and more states are adopting the "expanded" screening panel now.

I'll be doing a screen with this baby because as a midwife I've detected a few cases of these disorders with the screen. And I haven't been to thousands of births, so for me, the risk is very real. And I don't think I could live with myself if my baby had one of the disorders and did not get life-saving treatment in time.
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#85 of 86 Old 03-22-2007, 01:43 PM
 
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I'm due any day now and we plan to do the screening. I refuse most everything, but this one seems to be all gain with little to no risk. It's up to the parents, but for us, it seems to make sense.

Kristi

Kristi wife to Mal , mom to Ziva (4/07) (3/08) Aliyah (1/09) and somebody new (edd 11/10). I
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#86 of 86 Old 03-26-2007, 06:40 AM
 
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Yes the PKU test is done in Ireland (and as far as I know, the UK - but I couldn't be certain on this) and has been done for many years.
It is commonly referred to as a heel stick test and tests for a range of conditions, not just PKU
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