newborn screenings and fatty oxidation disorder

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PeppermintPatty's picture
Joined: 08/21/07
Posts: 426
newborn screenings and fatty oxidation disorder

I am just sick to my stomach right now. I received a phone call regarding Daniel's newborn screening blood results indicating the need for further testing on a metabolic disorder (under fatty oxidation disorder-it was flagged for further testing on the report)

I am so scared that he has this disorder and am anxiously awaiting until I can phone the pediactrician tomorrow and schedule an appointment to follow up on this.

I am also praying that because this is a screening, it was turn up nothing with the follow up testing

Has anyone ever heard of this? Sad

Cherrykitten's picture
Joined: 07/03/08
Posts: 700

I've never heard of it either, but I'm keeping my fingers crossed that further testing will come back negative.

skylersmomma's picture
Joined: 04/10/11
Posts: 927

I haven't heard of this but wanted to letting you , daniel and your family r in my thoughts and prayers hope all turns out ok. Please keep us up to date
((Hugs))

skylersmomma's picture
Joined: 04/10/11
Posts: 927

Ment to say " let you know" sorry apparently can't spell or type

jonibug's picture
Joined: 11/27/06
Posts: 781

I haven't heard of it either but you are all in my prayers!

ekcanada's picture
Joined: 05/06/09
Posts: 1707

Thinking of you doll! Please KUP!

PeppermintPatty's picture
Joined: 08/21/07
Posts: 426

Thanks for your thoughts and prayers. I am really praying boldly that the screening will reveal a false positive and he is completely healthy.

I researched the disorder and looks a bit complicated. I need to stop researching things and stand firm in my faith that God will take care of Daniel and our family.

Starflyr's picture
Joined: 10/20/07
Posts: 428

:bigarmhug:

that's always scary. I know it doesnt help, but MOST newborn screening positives are false positives. Im assuming this was his first newborn screen that came back abnormal? Have you done the second one yet (usually done between 8 and 14 days old)? Usually, that's the first step in seeing if it's a real problem or just a false positive.

TRY not to google things too much, you'll always get the absolute worst case scenarios and scare yourself silly.

Star

PeppermintPatty's picture
Joined: 08/21/07
Posts: 426

Hi Star,

As far as I know, that was his first screening at the hospital. He will have some follow up testing as soon as I get him to his ped (hopefully early this)

Starflyr's picture
Joined: 10/20/07
Posts: 428

I hope you get a definitive answer soon.

There are a lot of different fatty oxidation disorders, and most of them can be treated pretty successfully (not cured but having the effects minimized). What I would definitely do at this point is be sure you arent letting him go more than 3-4 hours between feedings. Your pedi will give you more information (depends on which disorder he got a positive for)

:bigarmhug:

heatherliz2002's picture
Joined: 02/02/08
Posts: 2273

:bighug:
I am praying that it is a false positive and everything is okay. KUP!

Danifo's picture
Joined: 09/07/10
Posts: 1377

I hope that it is a false positive or at least something easily controlled.

mandi04's picture
Joined: 08/10/03
Posts: 2272

:bigarmhug: I hope it's a false positive! I don't know much about it but hopefully they can get you answers soon.

nori_garsi's picture
Joined: 10/31/06
Posts: 2069

I haven't heard of it either but hopefully the tests will all come back negative.

Joined: 07/12/06
Posts: 831

HUGS. Haven't heard of it before either. Praying that it is a false positive.

indianajones's picture
Joined: 01/21/07
Posts: 1486

I don't know much about it (sounds like Star gave you some good advice) but wanted to let you know I'm thinking of you guys. Keep us posted! :bigarmhug: