Prayer Request for Baby Charlotte - Mothering Forums

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#1 of 28 Old 07-17-2009, 08:05 PM - Thread Starter
 
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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

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#2 of 28 Old 07-17-2009, 08:07 PM
 
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I'll be praying for you. I think false positives are common.
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#3 of 28 Old 07-17-2009, 08:28 PM
 
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: 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

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#4 of 28 Old 07-17-2009, 08:32 PM
 
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Crossing my fingers that it is a false positive and you will be able to continue nursing your little one!

Angela lactivist.gif, married for 14 1/2 years to DHtwins.gif, mother to DD 8-5-97homeschool.gif, DS 8-5-09 uc.jpgbabyf.gif, and SURPRISE!!! pos.gif due 2-17-12

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#5 of 28 Old 07-17-2009, 08:42 PM
 
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You and Charlotte will be in our thoughts and prayers.

hh2.gif Proud Mama to DS1 09/07 ribboncesarean.gif, DD 07/09 hbac.gif, and DS2 06/11 uc.jpg.  Feeling more and more blessed with each day!

 

 
 
 
  

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#6 of 28 Old 07-17-2009, 08:45 PM
 
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most definitely, you will both be in our prayers.

Kate, Wife to DH and Mommy to a 5yo lovin' DS; three angels 4/08 9/08 3/10 in Heaven,
waitin' for my baby

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#7 of 28 Old 07-17-2009, 08:55 PM
 
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Praying for baby Charlotte!

Chrissy, lucky mama to Noah (9), Lilah (6), Rowan (3) and Laney (1).
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#8 of 28 Old 07-17-2009, 09:18 PM
 
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praying that it is a false positive

mama to DD (7), DS (3.5), and another DS arriving in August!

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#9 of 28 Old 07-17-2009, 09:26 PM - Thread Starter
 
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Thanks ladies I will keep you posted!

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#10 of 28 Old 07-17-2009, 09:39 PM
 
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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.

mama to Journey (1/07) Sequoia (1/07) and Camellia (7/09)
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#11 of 28 Old 07-17-2009, 09:42 PM
 
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egads how worrisome! So sending false positive vibes.
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#12 of 28 Old 07-17-2009, 10:14 PM
 
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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.
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#13 of 28 Old 07-17-2009, 10:23 PM
 
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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. :

Peaceful mama to three blissfully-birthed and incredible small people: dd10, dd7 and ds5. Always awed and so thankful to be a midwife.
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#14 of 28 Old 07-17-2009, 11:13 PM
 
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You will be in my thoughts. I hope that it is a false positive. {{{HUGS}}}
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#15 of 28 Old 07-18-2009, 01:26 AM
 
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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)
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#16 of 28 Old 07-18-2009, 01:32 AM - Thread Starter
 
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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!

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#17 of 28 Old 07-18-2009, 06:49 AM
 
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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!
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#18 of 28 Old 07-18-2009, 06:56 AM
 
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crossing my fingers hard for you mama

finally midwife mama to my home-birthed nurslings: Noemi Sakura 16.10.07 & Seder Pádraig 13.7.09 and partner to their lovely daddy
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#19 of 28 Old 07-18-2009, 09:00 AM
 
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Thinking of you and your baby girl. I hope everything turns out well.

love.gif

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#20 of 28 Old 07-18-2009, 01:17 PM
 
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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 ::

Mommy to DS1 July '09 and DS2 Oct '12
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#21 of 28 Old 07-18-2009, 04:22 PM
 
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My thoughts and prayers are with you, your family and Baby Charlotte.
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#22 of 28 Old 07-18-2009, 09:41 PM
 
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I hope it is a false posative. Keep us posted

Mother to Juliette Elora (7-5-09) : Married to my best friend and DH Chris
Caretaker of two strange cats Pippin and Sylvie
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#23 of 28 Old 07-18-2009, 10:51 PM
 
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praying!

l, <>< wife to my sweetie, proud mama to 3 cubs, 2 who clw & 1 that i i ep for . baby was evicted early by induction due to severe pre-e/hellp syndrome
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#24 of 28 Old 07-21-2009, 03:32 PM - Thread Starter
 
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Thanks everyone! We took her on Saturday to get blood drawn (which was NOT a fun time, as you can imagine ). She actually did quite well during the draw ~ they had to take it from her arm so they sent us to the peds floor of the hospital and a nurse took it ~ she got it on the first try and Charlotte was able to nurse through the procedure which helped with *my* anxiety, if nothing else! But, the hospital staff kept sending us to different departments, asking US what they were supposed to be doing (what they were drawing for, how much she weighs, how much blood, etc.) when they had the paperwork RIGHT IN FRONT OF THEM! Ugh. Because I wasn't stressed enough about the potential diagnosis, I wanted to repeat it over and over :P But, all is well for now. It will be 8-10 days before we hear anything. Charlotte is still doing really well, has gained quite a bit of weight (she was up 12 ounces over her birth weight at just over 2 weeks!), no jaundice, no more vomiting, etc. I am fairly confident that we will get a negative result, and in the meantime I'm just enjoying my little Bugsy (see mharen.blogspot.com for the reason behind the nickname)

I'll post when I hear anything!

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#25 of 28 Old 07-24-2009, 05:34 PM
 
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I'm from the August ddc, but dd came in early June due to severe pre-eclampsia.

Just wanted to offer a shoulder to you. We also got a positive on the first metabolic screen (half ignored due to prematurity) and the 2nd, and we are headed to the hospital now for "Further testing."

FWIW, I'm also an avid breastfeeding mum and was totally disappointed that I wouldn't be able to breastfeed her - but I had been struggling with milk supply and latch to that point anyway after spending 35 days separated (her in hospital me at home.)

Anyway - good luck to you and sending good thoughts your way.

Grumpy72 ::
M 6/2001, S 12/2005, E 6/2009 (31wkr) & birth-mum to H 9/2003
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#26 of 28 Old 07-26-2009, 10:42 AM - Thread Starter
 
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We heard back from our ped and her blood test came back NEGATIVE!!! Yay!!! Thanks for all the thoughts and prayers everyone!

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#27 of 28 Old 07-26-2009, 10:46 AM
 
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Yayyyy!!!!!

Angela lactivist.gif, married for 14 1/2 years to DHtwins.gif, mother to DD 8-5-97homeschool.gif, DS 8-5-09 uc.jpgbabyf.gif, and SURPRISE!!! pos.gif due 2-17-12

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#28 of 28 Old 07-26-2009, 04:06 PM
 
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Wonderful news!
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