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Prayer Request for Baby Charlotte

post #1 of 28
Thread Starter 
We got the results back from Charlotte's newborn metabolic screening today and she tested positive for Galactosemia. Our ped does seem fairly confident that this is a false positive (though he could just be acting confident until we get the next test done...), but we have to take her tomorrow morning to the hospital for a blood draw, and then should get the results back by Thursday. Until then I just get to worry...

She has been such an easy baby to this point, but now I'm worried that her easy-going-ness has been lethargy. And, she didn't spit up until a couple of days ago but has now been projectile spitting/vomiting...could totally be a coincidence but maybe not, too.

The only treatment (no cure) for this disease is to cut out ALL galactose (including breastmilk) and put her on soy or special formula. I know that formula is not the devil, but breastfeeding (as most of you probably know!) is so important to me, so the prospect of not being able to breastfeed her has pretty much had me in or on the verge of tears since I got the results. Also, even with a special diet, the disease can cause learning delays and reproductive problems.

Any prayers our way would be much appreciated
post #2 of 28
I'll be praying for you. I think false positives are common.
post #3 of 28
: to you and your little Charlotte, mama. I just saw another thread about a mama facing this same issue.

http://www.mothering.com/discussions....php?t=1102958

post #4 of 28
Crossing my fingers that it is a false positive and you will be able to continue nursing your little one!
post #5 of 28
:
You and Charlotte will be in our thoughts and prayers.
post #6 of 28
most definitely, you will both be in our prayers.
post #7 of 28
Praying for baby Charlotte!
post #8 of 28
praying that it is a false positive
post #9 of 28
Thread Starter 
Thanks ladies I will keep you posted!
post #10 of 28
Hey Sarah-
We had a false positive with Sequoia. The pedi said it's pretty common. My thoughts are with you and your baby Charlotte.
post #11 of 28
egads how worrisome! So sending false positive vibes.
post #12 of 28
I'm not from your DDC but I had to just pop in and offer my reassurance that everything will in all likelihood be absolutely fine.

When my DD was born, she screened positive for isovaleric acidemia. Like you, I began to recognize 'symptoms' of the disease, and I drove myself completely insane until the results from the proper test came back and were in fact negative. Finding out that she was healthy was such a relief.

It's so easy to see things as signs of something awful in this type of situation. You and your baby are in my thoughts. Please post a big happy update when your results come back.

Until then, my prayers are yours.
post #13 of 28
Thinking of baby Charlotte and your family. Galactosemia is definitely one of the more common disorders to get a false positive for! She is most likely entirely healthy and you will be able to continue breastfeeding. I hope that the test comes back negative, and sorry you are going through this. :
post #14 of 28
You will be in my thoughts. I hope that it is a false positive. {{{HUGS}}}
post #15 of 28
I am praying for you!
False positives are very common!

Also, my 18 mo used to have projectile vomit often because of my overative letdown (more milk than she could handle). It is not unusual and what one has to do is to try to reduce milk production a little bit (many breastfeeding websites teach how to do that)
post #16 of 28
Thread Starter 
Thanks Quindin I dealt with OALD with ODD so I'm sure I'll be doing that again, esp. with nursing 2 my supply is quite high! ODD did spit up all the time, but rarely projectile...hopefully it's just been a fluke that Charlotte does it!

I am an LLL leader, but didn't even think of OALD or oversupply as the reason for her vomiting...if another mom called me with that problem those are probably the first two thing's I'd suggest...but when it's your own baby I don't think you think clearly! So thanks for the ideas!
post #17 of 28
Hoping it comes out negative!!
I do know someone who was able to nurse her baby who had galactosemia because he could just tolerate her milk. Don't know more than that. She was also a lll leader. I don't know how often this is possible.
Also ds #2 had quite a bit of projectile vomiting and had to be upright for quite awhile after nursing because of my let down too. I was pretty much getting soaked a couple times a day.
All the best!
post #18 of 28
crossing my fingers hard for you mama
post #19 of 28
Thinking of you and your baby girl. I hope everything turns out well.
post #20 of 28
My SIL just had a false positive on one of the metabolic screenings, so it does happen. I'll be thinking of you and baby ::
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