Has anone ever gotten a Guthrie test done after UC (aka PKU test)? - Mothering Forums

 
Thread Tools
#1 of 29 Old 05-21-2008, 03:35 PM - Thread Starter
 
Thankful'n'Blessed's Avatar
 
Join Date: Feb 2008
Location: Sunshine State
Posts: 71
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi all, I'm planning a UC, due October 19. I'm trying to gather all the necessary info. I am interested in having the Guthrie test done, where you prick the baby's heel to check for PKU, among other things. I can't seem to find out how to do it after a UC though. I've called the local Health Dept. (I live in FL) an they say they don't do it because the Dr. or midwife always does it....so I called several pediatritians in the area to ask if they could do it. They all said no also. Anyone ever run into this before. If so, what did you end up doing?

I don't mind doing the test myself, if someone would just tell me where to get the little card and where to send it off to. Everyone I've talked to has been none-too-thrilled that I'm not even planning to see a medical professional , so they haven't been too helpful.

If worse came to worse, I could always go back and see my old midwife (who attended my first birth). I'm sure she would do it for me. But I'd basically have to go in for a full appointment (and pay for a full appointment) just to get the test done, which seems a bit un-necessary to me. Any suggestions?? TIA!

Rachael belly.gif , Daughter of the King, Wife to DHflowersforyou.gif (12-31-03), Mama to DS1blahblah.gif  (5-9-06), DS2 bouncy.gif (10-20-08), DS3 happytears.gif (7-28-10), and thankful to be expecting #4 1sttri.gif at the end of December2012.

Thankful'n'Blessed is offline  
Sponsored Links
Advertisement
 
#2 of 29 Old 05-21-2008, 03:52 PM
 
paquerette's Avatar
 
Join Date: Oct 2004
Location: Poconos
Posts: 6,594
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
How is it that pediatricians don't do it? They often have to re-test hospital-born babies.

I know you can get the cards in some birth supplies websites and you can fill them with cord blood. I don't know where people send them, though.
paquerette is offline  
#3 of 29 Old 05-21-2008, 05:30 PM
 
BlessedOne's Avatar
 
Join Date: Apr 2008
Location: In the Middle of everywhere
Posts: 1,193
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 53 Post(s)
I have never gotten a PKU for a UC. Atleast I do not believe they did it when I took him to his one week check up.You may try to call local labs...they may have the things needed (and may do it for you) and could determine the results.


Just out of curiousity....why do you want to get the PKU?

Here are some links to info about PKU....so you can make an informed decision....
http://children.webmd.com/phenylketonuria-pku-test
http://www.labcorp.com/datasets/labc...o/sr012400.htm
BlessedOne is offline  
 
#4 of 29 Old 05-21-2008, 09:24 PM
 
soso-lynn's Avatar
 
Join Date: Dec 2007
Posts: 1,222
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My midwife left the test with me and told me to do it if I wanted to, so perhaps you can ask a midwife or doctor or hospital for the kit and do it yourself.

And you can wait 2 months (I think) and get a urine test instead of making your baby bleed.

Single mom to E (2004) and D (2010)
soso-lynn is offline  
#5 of 29 Old 05-21-2008, 10:11 PM
 
CherryBomb's Avatar
 
Join Date: Feb 2005
Location: Indiana
Posts: 7,885
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
A doctor should certainly be able to do it. My second dd had to have her newborn screen done 3 times, twice in the NICU and once at the doctor's office. Maybe they're giving you the run around, or the nurse/desk person wasn't aware they could do it?
CherryBomb is offline  
#6 of 29 Old 05-21-2008, 11:30 PM
 
Defenestrator's Avatar
 
Join Date: Oct 2002
Location: Ann Arbor, MI
Posts: 1,889
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
You can get a card from a private lab that tests for even more disorders than the state programs here. I'm a midwife and just did one of these screenings for a client, but they did not try to verify that I was a medical professional. I think it would be quite possible to do the test yourself one way or another and send it in. For the heel poking, try a "NeatNik" brand lancet, sold by a number of midwifery supply companies.

Stacia -- intrepid mama, midwife, and doula. Changing the world one 'zine at a time.
Defenestrator is offline  
#7 of 29 Old 05-21-2008, 11:57 PM
 
BlessedOne's Avatar
 
Join Date: Apr 2008
Location: In the Middle of everywhere
Posts: 1,193
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 53 Post(s)
Quote:
Originally Posted by soso-lynn View Post
My midwife left the test with me and told me to do it if I wanted to, so perhaps you can ask a midwife or doctor or hospital for the kit and do it yourself.

And you can wait 2 months (I think) and get a urine test instead of making your baby bleed.
correct.....over 6 weeks they do a urine test
BlessedOne is offline  
#8 of 29 Old 05-22-2008, 12:00 AM
 
sunnymw's Avatar
 
Join Date: Feb 2007
Location: SWGA
Posts: 2,282
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Defenestrator View Post
You can get a card from a private lab that tests for even more disorders than the state programs here. I'm a midwife and just did one of these screenings for a client, but they did not try to verify that I was a medical professional. I think it would be quite possible to do the test yourself one way or another and send it in. For the heel poking, try a "NeatNik" brand lancet, sold by a number of midwifery supply companies.
Quote:
NeatNick, Sweeping Action Heel Lancet, for full-term babies (Currently unavailable due to voluntary manufacturer recall)

Sunny coolshine.gif: gun toting, retired breastfeeding, car seat loving, guitar playing, home birthing and schooling mama to Jakob (10.06), Mikah (07.08) and Korah (07.11). uc.jpg 

sunnymw is offline  
#9 of 29 Old 05-22-2008, 12:14 AM
 
kaylee18's Avatar
 
Join Date: Dec 2005
Posts: 684
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 2 Post(s)
There are other brands of lancet made for metabolic screening, such as the QuikHeel. http://birthwithlove.com has many types to choose from.

It is inadvisable to delay the initial newborn screen beyond a day of age, since several of the disorders for which it tests can be fatal by 7 days of age without treatment. It is best to repeat the screen at 2-4 weeks of age, since a few of the tested disorders may be missed in the first screen and show up in the second. However, if you're committed to only doing it once, 24 hours of age is best (or 12 hours after first feeding), with the sample sent off immediately after drying.

I have another post detailing ways to make the prick least traumatic. The most important part is to warm the heel beforehand and not to squeeze it hard, which is not only painful but also causes hemolysis (broken blood cells), which reduces the accuracy of testing. I'll look for it to link later.

The screen cannot be done with cord blood. Only blood typing (using an Eldon card) can be done with cord blood, and that's only needed if the mother is Rh- and the father is Rh+ (to determine whether the RhoGam injection should be given to the mother).
kaylee18 is offline  
#10 of 29 Old 05-22-2008, 09:15 AM
 
treehugginhippie's Avatar
 
Join Date: Nov 2004
Posts: 2,049
Mentioned: 2 Post(s)
Tagged: 0 Thread(s)
Quoted: 2 Post(s)
Quote:
Originally Posted by kaylee18 View Post
I have another post detailing ways to make the prick least traumatic. The most important part is to warm the heel beforehand and not to squeeze it hard, which is not only painful but also causes hemolysis (broken blood cells), which reduces the accuracy of testing. I'll look for it to link later.
I'd love to see the link you posted for this.

Tina - mama to DD1 12yrs, DD2 7yrs, DD3 4 yrs & baby and wifey to DH.
treehugginhippie is offline  
#11 of 29 Old 05-22-2008, 01:05 PM
 
redhen's Avatar
 
Join Date: Mar 2005
Location: Sacramento, CA
Posts: 424
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I saw my older daughter's pedi near the end of my pregnancy and told her I was having a home birth and asked if I could do a newborn checkup with her after she was born. We went in when she was two days old and they did the PKU there. I can't imagine any pedi's office that couldn't do it... did you specifically say you were UCing? Maybe they don't want to do it for that reason.

I bake, therefore I am.
redhen is offline  
#12 of 29 Old 05-22-2008, 01:13 PM
 
KariM's Avatar
 
Join Date: Mar 2004
Location: at the sewing machine (in zone 5A)
Posts: 3,326
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
We take the babies in to see a doc for a newborn exam within the first week after the birth.

With DD2 we just asked the doc for a referral for the test. Then we went over to the lab at the hospital and had the blood taken there.
KariM is offline  
#13 of 29 Old 05-22-2008, 01:48 PM
 
paquerette's Avatar
 
Join Date: Oct 2004
Location: Poconos
Posts: 6,594
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kaylee18 View Post
It is inadvisable to delay the initial newborn screen beyond a day of age, since several of the disorders for which it tests can be fatal by 7 days of age without treatment. It is best to repeat the screen at 2-4 weeks of age, since a few of the tested disorders may be missed in the first screen and show up in the second. However, if you're committed to only doing it once, 24 hours of age is best (or 12 hours after first feeding), with the sample sent off immediately after drying.
Most of us will not have our milk come in that soon. Are you suggesting giving formula in order to do the test?
paquerette is offline  
#14 of 29 Old 05-22-2008, 01:54 PM
 
paquerette's Avatar
 
Join Date: Oct 2004
Location: Poconos
Posts: 6,594
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Having just read through the WebMD and LabCorp links, they specifically state that results UNDER 24 hours of age are less likely to be correct, and that your baby should have been drinking breastmilk or formula for a full 48 hours. So even if you do formula feed just for the sake of doing this test as early as possible, you still shouldn't do it before 48 hours of age.
paquerette is offline  
#15 of 29 Old 05-22-2008, 02:21 PM
 
crissei's Avatar
 
Join Date: Oct 2004
Location: Ferrum, Virginia
Posts: 1,769
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Which of the newborn screening disorders have to be treated within one week? My DS was tested when he was several days old in the NICU, (he does have congenital hypothyroidism).

For this birth, we are taking the baby to our family doctor a few days after birth for the newborn screening.
crissei is offline  
#16 of 29 Old 05-22-2008, 02:31 PM
 
vesper0's Avatar
 
Join Date: Jun 2007
Posts: 146
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I have had a pku done with a UC baby at the pediatricians office. Maybe, they are just being unhelpful, since it was an unattended birth. Just don't mention it was a UC, say it was a HB if necessary.
vesper0 is offline  
#17 of 29 Old 05-22-2008, 03:17 PM
 
BlessedOne's Avatar
 
Join Date: Apr 2008
Location: In the Middle of everywhere
Posts: 1,193
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 53 Post(s)
Quote:
Originally Posted by paquerette View Post
Most of us will not have our milk come in that soon. Are you suggesting giving formula in order to do the test?
you would still have your 'first milk' for the baby....I would assume that would be good enough ...
read through those links I posted, they have a lot of good info about when it should be done and such
BlessedOne is offline  
#18 of 29 Old 05-22-2008, 09:46 PM
 
kalisage's Avatar
 
Join Date: Mar 2008
Posts: 878
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Our homepath doc did the PKU test for us, she even comes to the house so momma & babe don't have to get out of bed
kalisage is offline  
#19 of 29 Old 05-22-2008, 09:49 PM
 
zjande's Avatar
 
Join Date: Nov 2002
Location: on the dusty homestead
Posts: 5,239
Mentioned: 26 Post(s)
Tagged: 0 Thread(s)
Quoted: 38 Post(s)
We just took our UC baby to a pediatrician at 14 days old & had them do it. They took blood, sent it to the lab, & we paid $54 for it. Easy peasy. (We are in Oregon, btw)

North Idaho rural living 
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
 mama to: 24 yo DD, 18 yo DS, 10 yo DS, 8 yo DS, 6 yr old DS, 4 yo DD, 3 yo DS, and our toddler boy!
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
God willing, someone new is coming in Jan. 2017!
To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
zjande is offline  
#20 of 29 Old 05-23-2008, 01:39 AM
 
kaylee18's Avatar
 
Join Date: Dec 2005
Posts: 684
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 2 Post(s)
Quote:
Originally Posted by paquerette View Post
Most of us will not have our milk come in that soon. Are you suggesting giving formula in order to do the test?
No, colostrum should be sufficient. A full milk supply is not necessary.
kaylee18 is offline  
#21 of 29 Old 05-23-2008, 01:42 PM
 
hottmama's Avatar
 
Join Date: Dec 2004
Location: Ann Arbor, MI
Posts: 5,203
Mentioned: 3 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
After my UC, I took my babe into the ped's office at 8 days for the PKU, no problems.
hottmama is offline  
#22 of 29 Old 05-24-2008, 02:00 PM
 
pixiepunk's Avatar
 
Join Date: Mar 2003
Location: Hampshire County, WV
Posts: 4,200
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
i didn't UC, but i got our PKU kit for free from our county health department. i called to tell them i had a homebirth and needed to get the sheet to fill out for the birth certificate, and they sent home a huge packet of information, in addition to two of the lancets, the card, and a pre-addressed envelope so i could send it in to the state lab. i was a wuss, so i asked my m/w to do it for me, but i certainly could've done it by myself, it's pretty straight-forward.

now, of course, it's required by law here in WV to have the PKU done, so perhaps that makes a difference. but i would think that even if they wouldn't do it themselves at your health dept that they could get you what you needed to do it yourself.

and if i hadn't been able to get that from the health dept i had planned to have the pediatrician do it - which is what i had done the last two times for my out of hospital births (one birth center, one home). so i would just call a pedi to set up a newborn check up - call in advance to get your name on their list with an approximate due date, and just tell them when you call that your midwife told you to have it done at the pedi. then when you call after the baby is born, remind them that you'll need it done.
pixiepunk is offline  
#23 of 29 Old 05-24-2008, 05:15 PM
 
A_Random_Phrase's Avatar
 
Join Date: Mar 2008
Location: USA
Posts: 845
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Thankful'n'Blessed View Post
Hi all, I'm planning a UC, due October 19. I'm trying to gather all the necessary info. I am interested in having the Guthrie test done, where you prick the baby's heel to check for PKU, among other things. I can't seem to find out how to do it after a UC though. I've called the local Health Dept. (I live in FL) an they say they don't do it because the Dr. or midwife always does it....so I called several pediatritians in the area to ask if they could do it. They all said no also. Anyone ever run into this before. If so, what did you end up doing?
That's strange that a pediatrician won't do it. I wonder if they told you the truth. (or if different states are different?) I had my 2nd baby in a hospital (Utah) and moved before her appointment with a pediatrician. When I called and told them I wouldn't be making the appointment, in a panic-like voice the person I was talking to said I should make sure I take her to a doctor where I was because she HAD to have her second PKU test. (She didn't have it and is fine).
A_Random_Phrase is offline  
#24 of 29 Old 05-24-2008, 05:30 PM
 
rozzie'sma's Avatar
 
Join Date: Jul 2005
Location: Amdist the urban decay
Posts: 2,281
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
You need to find the coordinator of genetic screening for your area. Actually when I had my son she tracked me down to get his PKU but it had already been done. You will probably have to call the health department in the capital where they file the birth certificates to find out who your coordinator is, the local DoH usually does not know. Mine even does housecalls.
rozzie'sma is offline  
#25 of 29 Old 05-24-2008, 05:40 PM
 
mommathea's Avatar
 
Join Date: Apr 2008
Posts: 897
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by rozzie'sma View Post
You need to find the coordinator of genetic screening for your area. Actually when I had my son she tracked me down to get his PKU but it had already been done. You will probably have to call the health department in the capital where they file the birth certificates to find out who your coordinator is, the local DoH usually does not know. Mine even does housecalls.
This, and also a pediatrician should be able to call in an order for a lab to do it. Ours did to the local hospital, we went to the outpatient lab, they did it and took care of sending it off.

Thea, wife to Daniel Homeschooling Momma to 4 beautiful, engergetic children.
mommathea is offline  
#26 of 29 Old 05-24-2008, 05:54 PM
 
mommathea's Avatar
 
Join Date: Apr 2008
Posts: 897
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by kaylee18 View Post
No, colostrum should be sufficient. A full milk supply is not necessary.
Colostrum doesn't work because of the tiny ammount injested and because of the higher levels of sugars that make up the colostrum. And any test taken within the first 48hrs have a higher risk of a false negative, such as in the Galactosemia disorder. To avoid aditional tests it is best to wait 12-24 hrs after the milk comes in.

Also even with a private labs it is pretty much impossible to get full results back in 7days and many State labs take 2-4 weeks to process the results and send them to the ped, or who ever ordered the results. So any of teh more 'horrible' disorders will be evident before the test come back.
Fortunatly most to the disorders are easy to diagnose before the test results come back, if you know what to keep an eye out for, and with the propper treament able to not cause any more harm to the baby.


For my first dc we found that he does have one of the disorders that the pku tests for, but because it was done so early we had to have him subjected to another test before the dr would write up an order for the geneticist to see him, but did perscribe a change in diet immediatly.
For our other children we opted to wait till the milk came in for better accuracy.

Thea, wife to Daniel Homeschooling Momma to 4 beautiful, engergetic children.
mommathea is offline  
#27 of 29 Old 05-26-2008, 10:54 PM
 
Captain_Crunch's Avatar
 
Join Date: Aug 2006
Location: East Millcreek,UT
Posts: 272
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
There are several places online where you can order newborn screening kits,however, they all require a dr's consent. Do you have a dr who would agree to sign the order form for you? Just google "newborn screening kit"

hope that helped,
Laura

Mama to 01/2008 and anxiously awaiting due July 2011
Captain_Crunch is offline  
#28 of 29 Old 05-27-2008, 01:01 AM
 
urklemama's Avatar
 
Join Date: May 2003
Location: Seattle, mold capital of the world
Posts: 666
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm in WA - we took our UC baby to a naturopath at 8 days, she did it then.
urklemama is offline  
#29 of 29 Old 05-27-2008, 08:27 PM - Thread Starter
 
Thankful'n'Blessed's Avatar
 
Join Date: Feb 2008
Location: Sunshine State
Posts: 71
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you for all the info! I forgot to subscribe to my own thread...I hate that! Sorry it has taken me so long to respond! I will do some more calling around. Maybe it was just a case of ignorant receptionists since it isn't terribly common for the pedi to do it. And yes, I did tell them it was a UC...they probably didn't like that too much! Thanks!!

Rachael belly.gif , Daughter of the King, Wife to DHflowersforyou.gif (12-31-03), Mama to DS1blahblah.gif  (5-9-06), DS2 bouncy.gif (10-20-08), DS3 happytears.gif (7-28-10), and thankful to be expecting #4 1sttri.gif at the end of December2012.

Thankful'n'Blessed is offline  
Reply


User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page



Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Online Users: 15,208

30 members and 15,178 guests
BirthFree , blessedwithboys , Deborah , Erica Sandwall , girlspn , healthy momma , IsaFrench , japonica , JElaineB , jennykess , lhargrave89 , lisak1234 , MamaNika , manyhatsmom , Michele123 , Mirzam , MountainMamaGC , NaturallyKait , NumberDigit1 , RollerCoasterMama , rubelin , samaxtics , Skippy918 , sren , transylvania_mom , zebra15
Most users ever online was 449,755, 06-25-2014 at 12:21 PM.