Re: Newborn screening

February 20, 2005

My oldest Daughter has a for of LCADD, she is now 9 yrs old, what was surprising to hear (not sure if this is true) that this screening only cost 50.00, and it was not required unless asked for. How would you know to ask??

Dale

Newborn screening

Thought some of you may be interested in this, Bowen

DHR adds new screening test for newborns that can save lives

ATLANTA (GA) - The Georgia Department of Human Resources recently announced that Georgia's newborns are now being tested for Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD), a metabolic disorder that causes seizures, coma, or even death if untreated. Testing for MCADD is made possible through the use of new technology, tandem mass spectrometry (MS/MS), which uses one blood spot to detect up to 30 additional disorders.

"We are proud of the partnership that DHR's Division of Public Health has with the Centers for Disease Control and Prevention (CDC), and the March of Dimes Georgia Chapter. Our work together has enabled us to add the lifesaving MCADD screening test to Georgia's newborn screening panel and to promote awareness of the importance of newborn screening," said Dr. Stuart Brown, DHR's acting director, Division of Public Health.

As a result of this targeted partnership, MCADD was added to Georgia's series of Newborn Screenings because Georgia law (Official Code of Georgia Annotated 31-12-6 & 31-12-7) and Rules and Regulations (Chapter 290-5-24) now require that every live born infant have an adequate blood test for nine treatable metabolic disorders and for Sickle Cell disorders.

MCADD is generally diagnosed between two months and two years of life, but can occur as early as two days of life and as late as adulthood. Affected children are healthy and usually show no symptoms until they go without food for prolonged periods. This may happen when the child is malnourished, or stops eating when sick with illnesses such as the flu or ear infections. This prolonged fasting can lead to hypoglycemia, vomiting, lethargy, seizures, coma, apnea, cardiac arrest, or sudden unexplained death.

About 20-25% of these patients die from the first sick episode when MCADD is undetected. MCADD is believed to account for 1 out of 100 Sudden Infant Death Syndrome (SIDS) deaths. Once this disorder is diagnosed and treatment begins, children with MCADD can expect to live normal, healthy lives, with normal growth and development. Treatment is effective and focuses on preventing long fasts.

"MCADD was once thought to be a rare condition," said Ann Henson, director of DHR's Newborn Screening for Metabolic and Sickle Cell Disorders Program. "We don't know yet the disorder's exact prevalence in Georgia, but national estimates indicate that one in every 15,000 babies may be affected, making MCADD nearly as common as PKU (Phenylketonuria), a disorder that, if not identified and treated early, causes severe irreversible mental retardation. We believe that the new MCADD test may identify nine babies a year in Georgia with the disease whose lives may be saved through early diagnosis and treatment."

To learn more about Georgia's Newborn Screening for Metabolic and Sickle Cell Disorders Program, visit http://health.state.ga.us/programs/nsmscd/diag_mcadd.asp. For the March of Dimes official policy on newborn screening, please visit http://marchofdimes.com/georgia.

February 22, 2005

When my 2nd baby was born, I had 52 supplemental tests done on him

through NeoGen Labs. Two months before my due date I called and

requested a kit. After my son was born, and released from the

hospital (at 2 days old) I brought him in to the pediatrician, who

took the blood (prick heel and put drops of blood on a special

card). Baylor also does the supplemental testing, however at the

time of my son's birth, they only offered 30 tests (their cost was

$25). Northside Hospital will draw blood and send it off to Baylor,

however they will charge you more than what it costs to do it at

your drs office. This may have changed since then (this was 3 yrs

ago).

March 21, 2008

In a message dated 3/21/2008 3:07:54 P.M. Eastern Daylight Time,

trinnea@... writes:

if a

non-invasive test I'm not having to pay extra for makes her feel

better, so be it.

how is the hearing test non invasive? What do they do? I heard they hook

up electric equip to the baby's head. That doesn't sound non invasive to me.

I'm not really sure what they do exactly though, we refused that test too.

Holly

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

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000000001)

March 21, 2008

,

I went through this with both my children because we wanted to be discharged

from the hospital 24 hours after the birth unless there was a reason to keep us.

The nurses were all in a flutter about these stupid screenings and telling us we

would have to repeat them if we left before 48 hours. Again, by being ignorant I

put my son through the stupid screening twice. With my daughter I asked them

what the point was of doing the first test if it essentially " didn't count? "

They had nothing to say and stopped pushing me to get her screened.

You mentioned the ear screening, which they did for both my kids in the hospital

the day after birth. My daughter failed in one ear and they told me that this

was very very common because of fluids being in the ear from the birth etc. I

got to stress out about her hearing for the next 4 weeks for no reason. Why give

the test at that point if they will likely fail?

Marie Quisenberry

leesamarie2828@...

Newborn screening

Kind of a rant here... LOL

I was discussing with my Hhomebirth Mmidwife yesterday our decisions

not to do any " newborn screening tests " , no Vit K, no eye goops, no

pokes prods of any kind, no putting anything in my child's mouth other

than my breast, etc. Not at birth, not two weeks later. The only

test I'm agreeing to is a hearing test at 2 weeks, because it is

non-invasive. She agreed, filled out the waiver form, then said she

was required to give me the State's pamphlet on the Newborn Screening

Program anyway (I was surprised she didn't have one for vaccinations

as well). I decided to read what the State of Colorado says and does

pertaining to these tests, as I'm new to this state. My last child

was born in New Mexico. Here they test for PKU, Galactosemia,

Hypothyroidism, Sickle Cell Anemia, Biotinidase Deficiency and

Congenital Adrenal Hyperplasia at birth, then again at the baby's

two-week check-up (pretty standard for most states, as far as I know).

In the pamphlet under the " Why " section it states:

" Why should my baby be tested a second time? Most babies get their

first newborn screening test before they are two days old. Sometimes

these early test results ARE NOT ACCURATE BECAUSE THE BABY IS TOO

YOUNG. Some conditions may not be detected on the first screen.

Therefore, all babies must be tested a second time, usually at the

first well baby visit (by 2 weeks of age). "

Sooooooo.... why test at birth at all, if the baby is too young to get

accurate results???? Makes NO sense. Well, it does make sense to the

allopathic community, as they can charge for an additional set of

tests, thereby padding their pockets a little more... a few bucks

extra per newborn adds in a hurry.

The pamphlet goes on to give the rate of occurance for each disease,

which is actually quite low... especially compared to the 1 in 150

children in the US that develop Autism that vaccinations cause. I

find myself thinking.... " Okay, and what is the rate of occurance of

these diseases in the UNVACCINATED child specifically? "

Anyway, just thought I'd share the thing I read today that made me

roll my eyes and slap my forehead at the stupidity and greed of our

government and allopathic community. I find myself having this

reaction to some stupid thing the allopathic community, government, or

BigPharma has come up with on a daily basis... sometimes multiple

times per day. It is so scary at how completely lacking in common

sense the " people in charge " are! Boy I'm glad I'm having another

home birth... I could just see myself in the hospital as a doctor or

nurse approached me.... " Step away from the baby! Back up NOW! " LOL

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March 21, 2008

Jeez, Louise--I remember the non-invasive hearing test in 1992 when my second

son was born. I thought, oh no big deal. Except they couldn't get it right,

tried several times really annoying my son (and me) until they finally gave up.

I'd pass on it. It's not as if it will give him his hearing back if there is a

problem, and if there is one, it should be evident soon enough by the

old-fashioned way of noticing he doesn't respond to you properly. And that's

free!

I agree, all these tests are big money-makers.

Winnie

Newborn screening

vaccinations

> Kind of a rant here... LOL

>

> I was discussing with my Hhomebirth Mmidwife yesterday our decisions

> not to do any " newborn screening tests " , no Vit K, no eye goops, no

> pokes prods of any kind, no putting anything in my child's mouth other

> than my breast, etc. Not at birth, not two weeks later. The only

> test I'm agreeing to is a hearing test at 2 weeks, because it is

> non-invasive. She agreed, filled out the waiver form, then said she

> was required to give me the State's pamphlet on the Newborn Screening

> Program anyway (I was surprised she didn't have one for vaccinations

> as well). I decided to read what the State of Colorado says and does

> pertaining to these tests, as I'm new to this state. My last child

> was born in New Mexico. Here they test for PKU, Galactosemia,

> Hypothyroidism, Sickle Cell Anemia, Biotinidase Deficiency and

> Congenital Adrenal Hyperplasia at birth, then again at the baby's

> two-week check-up (pretty standard for most states, as far as I know).

>

> In the pamphlet under the " Why " section it states:

>

> " Why should my baby be tested a second time? Most babies get their

> first newborn screening test before they are two days old. Sometimes

> these early test results ARE NOT ACCURATE BECAUSE THE BABY IS TOO

> YOUNG. Some conditions may not be detected on the first screen.

> Therefore, all babies must be tested a second time, usually at the

> first well baby visit (by 2 weeks of age). "

>

> Sooooooo.... why test at birth at all, if the baby is too young

> to get

> accurate results???? Makes NO sense. Well, it does make sense

> to the

> allopathic community, as they can charge for an additional set of

> tests, thereby padding their pockets a little more... a few bucks

> extra per newborn adds in a hurry.

>

> The pamphlet goes on to give the rate of occurance for each disease,

> which is actually quite low... especially compared to the 1 in 150

> children in the US that develop Autism that vaccinations cause. I

> find myself thinking.... " Okay, and what is the rate of

> occurance of

> these diseases in the UNVACCINATED child specifically? "

>

> Anyway, just thought I'd share the thing I read today that made me

> roll my eyes and slap my forehead at the stupidity and greed of our

> government and allopathic community. I find myself having this

> reaction to some stupid thing the allopathic community,

> government, or

> BigPharma has come up with on a daily basis... sometimes multiple

> times per day. It is so scary at how completely lacking in common

> sense the " people in charge " are! Boy I'm glad I'm having another

> home birth... I could just see myself in the hospital as a

> doctor or

> nurse approached me.... " Step away from the baby! Back up NOW! "

> LOL

>

March 21, 2008

Correct on the hearing screen. Mine will be done at 2 weeks, and I do

know to take these tests with a grain of salt. I'm not being charged

for the hearing screen, so I figure what the heck. My midwife is a

bit of a worry wart, and when I agreed to this one test she got a look

of relief on her face... not sure what the problem is there, but if a

non-invasive test I'm not having to pay extra for makes her feel

better, so be it. LOL

On Fri, Mar 21, 2008 at 12:51 PM, Marie Quisenberry

<leesamarie2828@...> wrote:

>

> ,

>

> I went through this with both my children because we wanted to be discharged

> from the hospital 24 hours after the birth unless there was a reason to keep

> us. The nurses were all in a flutter about these stupid screenings and

> telling us we would have to repeat them if we left before 48 hours. Again,

> by being ignorant I put my son through the stupid screening twice. With my

> daughter I asked them what the point was of doing the first test if it

> essentially " didn't count? " They had nothing to say and stopped pushing me

> to get her screened.

>

> You mentioned the ear screening, which they did for both my kids in the

> hospital the day after birth. My daughter failed in one ear and they told me

> that this was very very common because of fluids being in the ear from the

> birth etc. I got to stress out about her hearing for the next 4 weeks for no

> reason. Why give the test at that point if they will likely fail?

>

> Marie Quisenberry

> leesamarie2828@...

March 21, 2008

Hm.. maybe I should ask what the hearing test here entails. In NM,

my midwife just clapped a couple of times behind each ear and when my

son looked in that general direction, he passed the test.... there was

no formal equipment involved.

On Fri, Mar 21, 2008 at 1:05 PM, <wharrison@...> wrote:

>

> Jeez, Louise--I remember the non-invasive hearing test in 1992 when my

> second son was born. I thought, oh no big deal. Except they couldn't get it

> right, tried several times really annoying my son (and me) until they

> finally gave up. I'd pass on it. It's not as if it will give him his hearing

> back if there is a problem, and if there is one, it should be evident soon

> enough by the old-fashioned way of noticing he doesn't respond to you

> properly. And that's free!

>

> I agree, all these tests are big money-makers.

>

> Winnie

March 21, 2008

No clapping with my son. They had things they put in his ears and couldn't get a

reading. Clapping sounds much better.

Winnie

Re: Newborn screening

Vaccinations

> Hm.. maybe I should ask what the hearing test here entails. In NM,

> my midwife just clapped a couple of times behind each ear and

> when my

> son looked in that general direction, he passed the test....

> there was

> no formal equipment involved.

>

> On Fri, Mar 21, 2008 at 1:05 PM, wrote:

> >

> > Jeez, Louise--I remember the non-invasive hearing test in 1992

> when my

> > second son was born. I thought, oh no big deal. Except they

> couldn't get it

> > right, tried several times really annoying my son (and me)

> until they

> > finally gave up. I'd pass on it. It's not as if it will give

> him his hearing

> > back if there is a problem, and if there is one, it should be

> evident soon

> > enough by the old-fashioned way of noticing he doesn't respond

> to you

> > properly. And that's free!

> >

> > I agree, all these tests are big money-makers.

> >

> > Winnie

>

March 21, 2008

Excellent rant !!!

And you're right, why do the screenings at all at birth...

I'd be interested to know the occurance rates the pamphlet you

received quoted for the diseases.

Those numbers are very difficult to find, I'd like to have them if you

don't mind taking the time....?!?!

Thanks,

Kris