I have permission from the mother to post this problem. This baby has an NG tube and parents are getting desperate. I hope someone on this list can help.
Term baby girl, adequate for gestational age, with Down Syndrome and a congenital heart defect. Breastfed without any problems for about 1 month (growing fine). At that time her heart started to act up (as expected), intake and growth declined, so tube feedings were initiated (always breastfed first, then bolused what she didn't take at the breast). This went on until her surgery. Repaired ~3 weeks ago, her heart is no longer an issue, but she won't eat.
She will only take the breast - hates bottles, SNS, cups, haberman nipples, syringes, etc. However, she is taking only 200ml per day from the breast (mom doing pre and post wts), everything else in being fed through the NG tube. She loves to be at the breast, great latch and suck, and will transfer up to 90ml when she gets serious. The problem is that she latches and sucks for a little while and then starts to play, babble, blow raspberries, smile, etc. She won't go back to "serious" feeding (mom has tried 3+hr periods at the breast without success). She is a very content little girt, rarely cries from hunger, but does give other cues, and she likes to cluster-eat in the afternoons (every hour or so) will sleep through the night if parents let her.
We have tried: eliminating almost all distractions (her mom is her favorite distraction, so can't get rid of her :o)) feeding every 3 hours, feeding every 4 hours, feeding completely on demand (had to stop this because she would dehydrate), now we are feeding on demand without letting her go more than 4 hours and making sure she gets fluid needs met (with NGT), but only fluid needs to see if she gets hungry and eats. So far, she hasn't. Today is day 3 of minimal feedings and nothing has changed. Have also tried breastfeeding without the tube in place and it does not make a difference.
OT has seen her and she did great, has been assessed by 2 IBCLCs and by me. There is nothing wrong with her skills/tone. Any ideas of how to get her to use her skills? Why won't she eat? Never had any GI problems, no reflux, no pain, normal diapers. It really looks like she's not hungry, but she is clearly not meeting needs - not even close.
Thanks in advance,
Daniela
P.S. - all the above interventions have been under medical supervision. Just so you know I'm not some crazy person doing these things to the baby on my own.
-
Daniela Torres Marco MS, RD.
Pediatric Clinical Dietitian
Texas Children's Hospital
6221 Fannin St MC-2-3521
Houston, TX 77030
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This information is privileged and confidential pursuant to Texas Health & Safety Code sections 161.031 - 161.033 and Texas Occupations Code section 160.007 and or T.R.C.P. 192.5.
-----Original Message-----
From: Lactation Information and Discussion
[mailto:[log in to unmask]]On Behalf Of Mary Ellen McNeal
Sent: Thursday, May 04, 2006 12:31 PM
To: [log in to unmask]
Subject: [LACTNET] What Next??? Bloody Stools Return
Here's the case: Second baby, born at 39 weeks, 7lbs. 3oz. No formula in =
the hospital. Exclusively breastfed. At 8 week check-up mom told Ped.
about bloody stools (sometimes spotty, sometimes jelly, it varied). Mom =
stopped all dairy and beef immediately per Ped. and then soy a few days =
later (very diligent to diet). Bloody stools continued for a few weeks an=
d
at approx. 12 weeks pp, mom started pancreatin 2-4 tablets after each mea=
l
and 2 after each snack, also 2 caps fish oil mid-day (per my suggestion).=
Blood appeared to be gone in 48 hrs. and stool was tested negative at Ped=
...
five days later. At about 8 days after starting enzyme blood returned
(nothing had changed in diet or mom's supplementation). At this time mom =
started a probiotic (per Ped.). At week 14 (which is this week), much to =
mom's disappointment, Ped. introduced Neutramagin. Now baby has diarrhea =
and still occasional blood ranging from jelly-like to spotted...
On top of this, with change in diet mom is getting frequent painful canke=
r
sores/ulcers in her mouth and has lost 35 pounds (since baby's birth) and=
has reduced energy due to diet and stress. She is probably smaller now =
than her pre-pregnancy weight, which was petite. Pediatrician's nurse tol=
d
her she could nurse in morning and evening, give formula during the day, =
and eat some dairy products...???? Is it now time for a GI specialist? =
Mary Ellen McNeal, LC Intern
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