Feeding Program Experiences (and nursing question) - Mothering Forums
Special Needs Parenting > Feeding Program Experiences (and nursing question)
kristenburgess's Avatar kristenburgess 04:51 PM 01-20-2010
My littlest LO is 14 months old (15 months next week). He is really, really tiny. Below the 5th percentile. He gets mistaken for a much younger baby!

He does not eat textured solid foods at all. I started to get a little concerned initially as months went on and he continued to gag on foods offered/vomit what he got down/pocket food to prevent it from going down.

Anyways, to fast forward through the past several months, we had a swallow study done that showed food goes down slowly, but no other issues seem apparent. We're now starting to work with an OT in the Feeding Program at our local hospital.

We've been to two appointments now and I think it has been a positive experience. They are very respectful of our dietary choices (we are a gluten free/mostly grain free family).

Right now they have us pureeing everything for Galen just to try and up his intake. He's been eating 1.5-2oz per meal. He's not picky at all - will eat anything that's pureed, most of the time (sometimes he refuses meals, but is getting better and better.)

Things have been a little hard for me because I'm getting a lot of, you know... just quiet "oh" when I explain what's going with Galen, esp. to my more crunchy friends. I guess they maybe wonder why we're not doing "child-led" feeding. I of course really don't feel like explaining myself, either. He's my 4th baby, and even if he wasn't, I'm his mom and I *know* something wasn't quite right. I have one friend who has been really supportive and that's so helpful, but sometimes it's hard to feel like you're really alone, kwim?

Just wanted to share and ask if others have had good experiences with a feeding program for their LO's.

Also, the OT suggested thinking about night weaning Galen to see if it might increase his appetite during the day. He goes to bed @7pm and usually wakes when we go to bed and nurses, then I put him back in his bed (his bed is in our room). Then he usually wakes again around 4-5am and comes to bed with us until I get up around 6am. He nurses this entire time.

I really don't have an objection to weaning at night, because I think he already goes long enough that it wouldn't be hard to get him to sleep a little longer. And I wouldn't mind at all for selfish reasons - he's a restless nurser and tends to keep waking me up. But I was curious to hear if anyone else has tried night weaning and did you find it makes a difference? I'm hesitant really to take any feeding away from him, though, he's so tiny.

He ate really well so far today (about 1oz at breakfast, 3oz at the clinic, then 3.5oz for lunch at home!) some I'm enthusiastic he'll keep it up, and maybe my little peanut will grow some

wednesday's Avatar wednesday 08:27 PM 01-20-2010
I also have a baby with feeding/growth issues and I absolutely know what you mean about friends not getting it. I heard a lot of "Aw she's just petite" and "Somebody has to be at the bottom of the chart" and that sort of thing until I just stopped talking about it.

FWIW, my daughter was sleeping through the night for a few months, but her intake/growth became so poor that we started making a point of waking her to feed her. She actually feeds the best at night. Go figure.

She had to wean at 8 months due to some severe problems we were having, and at that point went to soy formula (she can't tolerate dairy). She is now getting a high-calorie soy formula with duocal added (extra fat/carbs in powder form). With all of this intervention she just barely maintains a curve at the 3rd %ile. I don't even want to think where she would be if I just tried to "relax" about it.

Good luck - you're the mama and you know what your baby needs.
CorasMama's Avatar CorasMama 09:14 PM 01-20-2010
subscribing. (This baby will very very likely have feeding problems)
DoulaVallere's Avatar DoulaVallere 11:44 PM 01-20-2010
Forum jumping...

I have a 2yo who is just over 20 lbs. I don't think he even has a percentile on the chart at this point, and our ped gives us lots of grief about it and was REALLY pushing us to wean when he found out DS wasn't eating solids at almost a year old. We don't have any food issues now, he eats like a horse (so I can't really relate or offer advice on that front) but he only recently stopped nursing - maybe 3 weeks ago - (because I'm pregnant, and my milk totally dried up in conjunction with me having VERY tender preggo nipples and I just couldn't take it anymore).

Anyway, he's very tiny, short and skinny, but he hits all his milestones pretty well, so we've decided he IS just petite. But on the weaning side of things...I night weaned him when I first got so sore, just after getting pregnant, and he started eating TONS more during the day. In fact, he'll wake up at about 5am now, ask for a granola bar, eat that in a half asleep state, and then sleep for another couple of hours. So for us, night weaning DID up his calorie intake significantly - especially since my supply had probably already started to dwindle by the time we did nightwean.

Hugs to you mama, and hoping you all get the answers and support you need!
KimPM's Avatar KimPM 12:48 AM 01-21-2010
Yes, I've been there. DS wouldn't eat anything either. Nobody around me had ever heard of a child like this, so I "get" the blank stares and quiet Oh thing. Except in my case, DS is my first (and only), so some people didn't think I knew what to do to feed him. Arrrgh. Like it was my fault he would constantly gag on food and spit/vomit it out. Like the breastfeeding was causing the problem. I got lots of unhelpful and frustrating advice. DS was doing EI for a year, and they were no help. Mostly their advice was to stop nursing and force feed him. Yeah, like that would work. Not. They didn't even catch his oral motor issues and low tone.

We did eventually find a private feeding therapist who was great. I kept nursing him until he was finally eating enough solids to start weaning on his own! (This was around 27 months of age.) So, if you feel that the right thing to do is to keep nursing, then let me encourage you to continue. Then you can wait and see if any improvements in eating cause a lower desire to nurse. At the same time, if you'd really like to night wean, then I think he will either shift to nursing more during the daytime or eating more pureed food. Either way it should be good. But DO keep some kind of nursing going, as long as he wants it.

(My DS didn't night wean until after he started eating enough solids. The night nursings were the first to go, but it was largely his idea.)
kristenburgess's Avatar kristenburgess 01:08 AM 01-22-2010
Thank you so much for sharing your experiences mamas! It's really just helpful to know that someone else "has been there."

Wednesday, how old is your daughter now? What's she weighing in at?

Galen will be 15 months in 5 days and he was at 18lbs on the nose last Friday. He's below the 5% percentile but I'm not sure exactly what percentile he's at. He seems so tiny to me, he is dwarfed by kids much younger than him. One benefit is he still fits nicely in his infant seat, lol.

I have been adding extra fats to everything I puree for Galen. Normally heavy cream for us because he's ok with dairy (from grassfed cows at our local farm, costs an arm and a leg )

Vallere - thank you for sharing about your little guy. I will not be surprised if Galen is about that size when he hits 2 at the end of the year. Thank you for sharing about the night weaning. I'm still feeling torn about it with Galen.

Even if I night wean I'm not sure I can say "no" if he wants to nurse before breakfast (he and I are up about an hour before breakfast). He doesn't eat much ate breakfast though. He will reject whole milk (in a sippy cup) if he wants to nurse. But I haven't tried to offer breakfast foods before nursing. Maybe he'd go for that and eat a good breakfast then nurse. I have not noticed that eating solids first decreases his nursing after.

Last night after eating a big supper (4oz pureed) he slept through one normal nursing (the one around 10-11pm, when we go to bed), so maybe he's working towards it on his own.

It would be somewhat nice if he'd do like your LO and eat something then go back to sleep. If he wakes at 5:30 or 6am he's UP. I like to work for an hour before I make breakfast and it's a little hard with a Galen crawling around.

We're working with EI in our area, and "officially" Galen is on around a 9-12 month developmental level, but to me he seems to be doing just fine. He's not walking yet, which I'm starting to feel mildly anxious about... But he's crawling, pulling up cruising, and climbing wonderfully. He knows several baby signs and he's very curious. The only thing developmentally I'm really concerned about is the eating.

Kim - don't worry, I'm not going to wean Galen until he's good and ready... I'm not ready for him to wean, either, he's my baby

Our EI is more general in their help - they helped us get connected to the feeding clinic and they keep an overall eye on how Galen is doing developmentally. They've been pretty respectful to us. At first they kept asking "but haven't you tried rice cereal?" ...As if rice cereal were going to make a miraculous difference. After a couple of home visits, I think they got the picture that Galen was in a healthy, supportive home... and that rice cereal wasn't going to be some sort of panacea.

I'll have to think over the night weaning and see how Galen does overnight. He is sleeping better overall, bedtime going much smoother. So maybe he'll start going overnight on his own.

Today he at 1.5oz at breakfast, then we had a feeding appointment and he ate 5 (FIVE!)oz at the appointment, then another 2oz about an hour later and drank 1oz of soup in the same sitting. At supper tonight he ate 4oz. Plus nursing sessions throughout the day. So he ate more today than I think he ever has in life. His tummy looked popped out to me, but that could just be me He was happy and cheerful about all of it. Some of the hints the OT has given me have really made a difference, I think. Galen doesn't like it at the feeding clinic when we get there initially but warms up. I'm hoping he'll feel more comfortable next week.

Ok... I'll stop rambling now!
mrsfru's Avatar mrsfru 02:18 AM 01-22-2010
I can totally relate to a tiny child and one who isn't eating well--ds1 had texture/SI issues (he was a preemie). He didn't eat a large amount of textured foods for a long time and we went to a ST who helped us w/eating.

Both of my boys have nursed--ds1 still does on occasion and ds2 is 17 mos and still going.

I personally would NOT night wean, no matter what the feeding therapist thinks. He probably still needs that nutrition, esp while he is learning more about how to tolerate new textures. And the night feedings are likely (for him, not you LOL) a very low stress time and way to get in extra calories. No food is going to come close to calories for the amount of "food" going in. It's probably the best nutrition he gets right now, plus how easy is it for you to nurse regularly during the day w/3 older kiddos?

I also don't really think it would change much w/his eating of solid food--this isn't really an "appetite" issue, so increasing his appetite may not really help him to eat more. It may, in fact, stress him and cause him to eat less and not try as hard to learn to tolerate new textures.

On a good note--my best friend's dd had a really strong gag reflex (as does my friend) and until her gut matured, she just would NOT eat solid food. Her mom cannot tolerate wheat or much dairy, so they are gluten free and mostly dairy free. Around 18 mos, she began to eat on her own, and now at 4.5 she's a great eater. No intervention was ever required and she continued to nurse until she was 3.5 yrs.

GL w/whatever you decide. It's very tough to deal w/this and we were lucky that it wasn't really a "primary" issue.

mrsfru
Kailey's mom's Avatar Kailey's mom 02:25 AM 01-22-2010
We had a very postitive experience from feeding therapy through All Childrens Hospital. She helped with texture issues; and was able to teach me techniques to use at home to increase her food intake With that said, I would NOT nightwean... I have a reason. My daughter regressed bigtime after an illness. She lost 6 lbs in a week! After all the progress she made, she lost it in a day. You may not have too many relapses..but don't expect NOT to have any kwim.. My daughter eventually bounced back and we were able to impliment everything we learned through therapy... but keep the milk.
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