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Old 03-03-2007, 09:56 AM   #1
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BocaSteins HB User
Feeding an infant with DS

Hi all! We are new here. Just found this board today. My wife and I recently had twins! Boy & Girl born on 12/12/2006. Our son was born with DS, but our daughter was not. They were born at a preemie 33 weeks. Our boy will be undergoing heart repair in the coming months once we get him a bit heavier. The challenge that we are facing is getting him to eat regularly. He seemed to be doing great for a while, but just recently he doesn't seem to be hungry. But he needs to eat to gain weight! He is currently on Digoxin for his heart which has helped tremendously. Does anyone have any advice or feeding tips. We tried lots of stuff, but I don't want to ramble too much in my first thread here!

Any responses will be greatly appreciated.

regards,
Seth

 
Old 03-06-2007, 06:53 PM   #2
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noahpratsmom HB User
Re: Feeding an infant with DS

hey guys! i am new here to, but not to down syndrome. when noah was a baby he really did not eat alot he was always in the negative percentile. i just took it as he could tolerate but i started cereal and food really early to get extra calories. he did really well i know all doctors say no food before 6 months but my doctor did years of rotations in picu and he said extra calories where ever he can get them is great. my noah is 6 now. he did not have to have surgery for his heart defect. we were lucky. they are such a gift. i have learned so much from noah. your son will really benifit from his sister trust me noah and my isaiah are 15 months apart and it was so good for noah. your son will gain before you know it. another trick make sure the nipple is on his palete alot of times i would have to touch it to noahs to remind him it was there. lots of luck .

 
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Old 03-07-2007, 04:53 AM   #3
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kimn99 HB User
Re: Feeding an infant with DS

First off, congratulations on your twins. Seth will bring you the most heartfelt joy you can ever imagine. And happy to hear his sister is doing fine after a an early appearance at 33 weeks. I can't imagine facing a heart surgery. I pray all goes well. My daughter's stomach and intestine were not connected so had surgery to repair that after birth. She is now 4 and has no health issues. Very healthy, inquisitive and full of love.

Does Seth seem to be refluxing at all or spitting up? My daughter, who is now 4, reacted to regular formula and became severely dehydrated and sick. She was two months old. They called it "failure to thrive". Anyway, we changed her formula to a pre-digested formula called Neocate. She went home on that and it made all the difference. Never a feeding issue.

Another thought is low muscle tone. I have read that some babies with DS can't suck very well due to the low muscle tone. Maybe try a different nipple. I wish I knew one to suggest. My mind goes blank. I went to so many sites at the beginning and now my mind goes blank.

Love to hear more about Seth and his sister's progress.

warmly,
kim

 
Old 03-07-2007, 01:37 PM   #4
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loll HB User
Re: Feeding an infant with DS

hello sorry i cannot really help with the feeding problem but felt i had to reply to you as my 3rd child william was born on the 19th of dec 06 and has ds. health wise he seems ok apart from a constant blocked nose, and he breastfeeds well so we have been lucky.congratulations on the birth of your babies i hope the surgery goes well

 
Old 03-09-2007, 05:54 PM   #5
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BocaSteins HB User
Re: Feeding an infant with DS

Thanks to all for the good wishes! Just to clarify, my name is Seth (I'm the Dad) and my son's name is Ian. His sister is Maia. We have had some luck in the eating department. We switched him to a hypoallergenic formula and also reduced the quantity we give him per feeding, but we increased the frequency. Part of the problem was that he would get so tired while eating. So we cut that down. He is also on Pepcid oral suspension as well. This is supposed to help with reflux. but he still has it occasionally. Anyway, we are having some success with his feeds and he has gained some weight. That makes us happy.

 
Old 03-16-2007, 10:27 AM   #6
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mrsqueen HB User
Re: Feeding an infant with DS

First off, congrats! Our son, Owen, is 10 months old, and is doing great! I started off breast feeding him, and he was feeding effectively, but he was not getting all that he needed, so we had to start bottle feeding him, but he hated all of the nipples. Our early intervention coordinator suggested a Haberman feeder. I went back to the hospital and the lactation consultant got one from the NICU, and we tried it and he sucked an ounce down like it was nothing. The Haberman feeder is a special bottle and nipple they use with babies that have problems with sucking, or babies with cleft pallets, or whatever. It worked great with Owen.

 
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