I am looking for advice from other parents. I can't believe I'm the only one and I can't believe my pediatrician has no helpful information.

A brief story of my daughter Bella. Born 26 weeks on 5-28-09 with 2 brothers. After numerous medical issues she finally got to bottle feed. She did horribly. She was eating so poorly they threatened a GI tube. We refused. She miraculously started eating and we got to take her home. With special nipples the nurses had cut.

So, I ended up stretching more nipples at home to allow her to eat. She was on Enfamil AR made to 24 calories. It's a damn milkshake. Took a while but we got into a routine at home. She was still horrible at feeds, she'd have screaming fits etc. I was the only one who could handle her enough to get her to eat. Not even hubby could do it.

She was up to 5oz every feed. About a week and a half ago, we started over. She is down to 2.5-3.5 oz per feed except one good bottle overnights. She stopped sucking, the OT people say her tongue is flat and she seems to have no idea what to do with the nipple in her mouth.

We were told we can try a thinner formula as her reflux has gotten better (either that or she's just not eating enough for it to be a problem)

SO we are trying a different formula, have tried different nipples/bottles etc.. She eats the first oz or so just fine and then FREAKS OUT!! She claws at her face, doubles over and screams at the top of her lungs. She chews her hands as if she is starving but no way in hell are we getting the bottle back in. so, we stop and try again an hour later and she takes another oz. It really seems like something is wrong with her and the Dr does not seem concerned.

In the last 2 weeks her 'little' brother who was trailing by almost a pound now weighs more than her.

I feel awful. She chomps on the nipple but when she gets something in her stomach it seems like she is in pain. She cries real tears and so do I after a while. I am at my wits end and don't know what to do for her. This is the most awful thing I have had to deal with, she is miserable and I can't console her.

In 2 weeks I will be taking her to a feeding clinic but I think I might have a nervous breakdown if she continues to get worse until then. This is so hard. If anyone has any insight please share.

This is what ours did when they started having a reaction to the milk proteins. Has she been on Nutramigen or Alimentum? or Elecare or Necate? I will write more later...supper time here.

Susan

ps. your mommy instincts are right...something is not right.

Parent to GGG born 31 weeks 4 days 4/26/07




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We went through a time where we had to literally force two of our DD to eat (eventually the third showed signs too, but several weeks later). We had to literally hold them and force them to suck on the bottle and they would cry because they were hungry, and then cried cause they hurt. This went on for too long, with consumption decreasing daily. Eventually they would take an ounce or two every two hours or so and then refuse everything else. They had milk soy protein allergies...they were allergic to the large protein strands that are in the formula (or in your breastmilk if you eat milk or soy). They were switched to Nutramigen and improved....within a few days they were increasing their feeds again.

They also suffered from reflux which can also cause this behavior. Everyone refluxes a bit...you and I do it. The trouble occurs when it either comes too far up and gets into the airway or if it is too often and aggravates the lining and every time they swallow it hurts so bad you want to die (happened in the hospital to me when they switched my heartburn meds) This can cause bottle refusal too.

One of ours had very bad milk soy protein allergy, and bad reflux aggravated by a hiatal hernia (hereditary from me). This combo caused her to start loosing weight because she learned if she didn't eat it didn't hurt. She ended up on an NG tube for about 8 months(that was such a hard decision but it was so good for her)

It was mainly by me pushing the point that these things were discovered...your gut is right...keep pushing until they listen. Take videos, keep logs of the amounts and times, and how long it takes to feed her....read up on these conditions and symptoms so you know what to ask and look for, keep scheduling appointments for followup. You both will make it through this, but it is much better for her that you keep on the doctors to find the problem.

Susan

PS...please keep me posted on this, I worry about babies and parents who are going through what we did.

Parent to GGG born 31 weeks 4 days 4/26/07




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If it turns out that reflux or allergies is not the issue, try getting a consult with a feeding specialist at your local children's hospital or therapy center. This person might be an OT who specializes, or more likely a speech/feeding specialist.

There are special nipples for kids with cleft palate that are flat. I don't know if they would work in your situation, but as you mentioned the flat tongue... I wondered.

Sheila
GGB 10/29/06 (33 weeks)

She definitely has reflux and she's on meds for it. It's probably getting worse and doses need to be adjusted. We stopped the new formula and went back to the milkshake AR stuff. She is still freaking out but at least she's eating a little more than yesterday.

I am tracking how much she eats and when. She is still barely eating. She freaked out so bad eating just now she almost fell out of my lap while I was tryping to turn her around to burp her. She's so little but she is stronger then even her brothers. She gets rigid and arches and her head snaps back I'm worried it's going to damage her. I'm so glad her jammies are stretchy or I'd have dropped the little munchkin. I didn't think babies were that strong, her brothers certainly aren't even close!

I am going to call the pediatrician again on Monday to ask about checking the dosing of her meds. She wasn't going to adjust it because we were switching formulas and adding a new med. That obviously didn't work.

On a lighter note, both her brothers eat just fine. I love my kids, this is very scary.

If they have tested her for blood in her stool...it is a quick litmus paper test on a dirty diaper...and recommended a different formula because of that, then you do need to try something else besides her previous formula. The AR is just added rice. You can get rice baby cereal, put it in your cuisinart type thing and make a fine powder out of it...then add it to any formula to make the AR part. you need at least a teaspoon and up to a tablespoon per ounce of formula, depending on both the baby and the formula(some are thinner than others)

Which meds is she on? Zantac needs regular adjusting, sometimes every two weeks. Prevacid not so much, but little ones sometimes need a higher dose than you would think. You can also give her a bit of mylanta/malox to help with the reflux pain before she eats too. It isn't a good long term solution, but while you are waiting for the doc to give you more meds or get back to you...it is something that will get you through a few days. Ask a doctor for the dose, ours said a 1/4 teaspoon was ok...but check first.

I understand the scary...yes, oh yes...but keep at it...keep after the doctors and be her advocate. You and she will make it though...whatever it takes...you both will make it through.

Susan

Parent to GGG born 31 weeks 4 days 4/26/07




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One of my daughters was crazy during feeding too. She had reflux, was initially put on Zantac which did NOTHING. Then we got the official diagnosis of reflux after a pH probe, and she was put on Prevacid. That helped tons, but she would still go crazy at times when feeding - like you, I was the only one who could get food down her. She was on a gentle based formula, which I don't think helped. She was also a horrible sleeper - she'd fall asleep with no problems, but would wake up after 30 minutes of naps, and at random intervals during the night screaming in pain.

We finally got a referral to an allergist, and it turns out she is allergic to milk protein. We switched her to soy immediately, and within two weeks she was taking longer naps and started sleeping through the night. Maybe you could try switching her to a completely milk-free formula? My husband had wanted to do that months before the allergist appointment, but we'd switched her 3 times already and I didn't want to cause her any more discomfort - irony!

Amy

Julia, ^Caitlin^ (stillborn due to encephalocele complications) & Gabrielle
30.2 weeks

One of our DD's has similar issues, though not to the extent of yours. A friend of ours is a speech therapist and she suggested starting DD on the pacifier for a few minutes until she's comfortable and then switching to the bottle. She said it's something they do with kids who have been tube fed for an extended period. It worked great for a while, so I suggest you use this trick sparingly, but it may tide you over until the clinic.

Mom to GBG born in July 2009 at 30w6d: 3#10oz, 3#12oz, 3#2oz