Failure to Thrive :(

Well, I knew it was coming I just feel so hopeless! Presley one of my 25 weeker twins is just not gaining. She is energetic, eats well, active, progressing, normal for her adjusted age....I just don't get it! We have her on 26 calorie formula, she eats baby food mixed with DuoCal and we even add oil to her food as well. Something has got to be wrong. She eats more than her twin and her twin gains just fine. The doctor that diagnosed her said that it is just a matter of not eating enough. While she eats well, she seems too full after only 3-3.5 oz of formula. She is 9 months adjusted (1 year actual) and now they are talking g tube. Have been for a while I just never gave in. We are going for our third opinion in a couple of weeks but it isn't looking good. Anyone know any causes on why this is happening? Thoughts/Opinions/Support? :(

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Forgot to add she is 13 lbs 3 oz. Her twin is 14 lbs 14 oz....and while they are saying that her twin is on the smaller side, she at least has a curve.

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If she eats well (just not large quantities), I would be inclined to get various opinions before you go to such drastic measures as a g tube. There are plenty of parents on he who have refused the tube. Their journey hasn't necessarily been easy, but many have been successful. I know Leapingly (her son is 2.5) had similar issues, and I think he's gaining fine now. You might want to look her up. The problem with the gtube is that it can halt their desire to eat by mouth for a long time. Does she deal with reflux? How is her digestion? Best of luck.

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She is on reflux meds and as far as I can tell she isn't having issues with it. I know this because there was a time before the eating trouble began where she straight up refused anything by bottle. That was months ago so I am confident to say that it isn't a problem anymore since she willingly eats. I agree with no gtube til we have answers because of that. But I also know growth is important and while she grows in length and head circumference, she does not gain in weight and at some point I have to ask myself how long do I let this go on? It has been a good 4 months of no weight gain and while we work with a dietician and a GI doctor, they always say the same thing that the intake is just not enough. Anymore that I put in her, she will vomit. So if I get the gtube I can almost assure you she will vomit from being too full. I pray that this other doctor has answers.

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Just making sure they've tested her for gastric emptying delay?

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My twins are the same age.. Corrected and actual.. My little twin is just 14lb and while they are saying he is failure to thrive they definayely haven't brought up anything as drastic as a gtube..
We add butter to everything, he is on 26cal but may be moved to 28cal,. If bub is happy, energetic and is at least gaining something (not losing) I would seriously consider other options rather than a feeding tube.. There are lots of other things that can be added to milk for extra cals.. Were your bubs micro premmies?

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My little one is almost five. She has been failure to thrive until this year and it's still an issue, just not one with a label. Those first two years were very difficult for us and yes, we added calories to her formula, reflux meds and the works. What we found out at almost two and then again at almost four helped us tremendously. Our daughter is low tone. She has mild CP and had oral aversions from reflux issues. Her reflux was silent and she would take her bottle so everyone thought it was under control but sadly wasn't. As her oral aversions bumped up she refused her meds for reflux / delayed gastric emptying so we slowly phased them out per doctor's orders. Also, tonsils and adenoids were huge but it took an act of Congress to get her to see an ENT. Finally our ENT heard about us through a private speech path consult and saw us immediately. Long story short- surgery to remove everything, scope her esophagus and test for eosinophilia, along with tubes and a ton of dental work due to the silent reflux helped tremendously. I'm not saying these are issues with your daughter but rather sometimes you have to think outside the box before radical surgery. I was against a g-tube because it wasn't a real fix for our daughter. She would eat and was growing, head growing well but long and lean, and had an interest in food. I knew something else was the root of all this disorganized feeding. We slowly over a year have built up her tolerance for larger amounts of food every two hours. It took time and patience but has worked well. Low tone kiddos burn calories like crazy so you have to increase how often you feed and jam pack those preferred foods with calories. I know how frightening it can be to think you are starving your child. Trust me- I knew at three months Ava was starving on breast milk and it took a neonatologist to force our ped's hand to back down on the breast milk rants. For us it didn't work and I will always carry that guilt.

Have they checked for delayed gastric emptying? Have you increased her amount of input by the slightest increment to stretch her tummy just a little? And I mean by a teaspoon at a time increase, not anything radical?

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We are going through pretty much the same thing. I'm so sorry I know how heart breaking it is to hear failure to thrive. My son 10months 7.5 adjusted and is 12lbs 6ozs. They did numerous tests and can not figure out he doesn't gain. He eats well 21-26ozs a day as well as baby food and cereal/oatmeal. He hadn't grown since December and it affected his growth of his length than his head quit growing. This is when they said he needed a g tube. We had 4 different drs tell us to do it. After having it about 3wks now all I can say is think hard on it. It's a complete life changer. Like the others have asked have they done a gastric emptying yet? Or checked for celiacs disease? Also, erythromycin is a great med for motility to get them to eat more. Good luck with what you decide and if you have any questions feel free to message me I've done a lot of research and my son has had pretty much every test they can do to figure out the problem with gaining weight.
Elisabeth

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I am right with you. I have been fighting g-tubes for months. They did an upper GI this morning and found that everything is anatomically correct...so now what? My daughter is 11mo act(91/2 adj)...I see so many babies on here getting G-tubes around this same age. Why? No, answers. My LO has been "FTT" for months. SHe grows in height and head...just not so in the weight issue.
We are on Erythromycin for motility, but it stops working and I think we have hit that stage. We are on the duocal too.
My daughter has never eaten more than 3oz and the GI insisted that something was physically wrong with her so we agreed to the upper Gi series. Nothing wrong.
So, now? Not sure where to go from there...I keep telling them that they cannot look at my daughter at her weight for the amount of bottles or ounces she should eat. They need to look at her size and what size that infant would be equivalent to. At 13lbs, your daughter is the size of a 3 month old (average). So, technically, she should be eating about 3-4oz bottles. I think volume is an issue for these preemies, but no one can tell me why...We are on 27cals. They started us on baby food to try to get food in her in between her bottles...it worked for a while, but now she just doesn't want to eat all day long...We were feeding her every 2 hours and nights, 10 feeds per day! We gained 3lbs in 6 weeks...and now she is like on strike! She wont touch her bottles...so frustrating, I understand

Have you tried dream feeds? It is the only thing that would tip her calories just enough to hit the amount preferred by the drs. I feed her 2x per night now, and it adds 5-6 oz per day. Soooo needed! Good luck. Im still looking for answers too! you can message me too! Sheri

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Have you considered how diet may be affecting her ability to grow? Is she allowed to eat any dairy or soy? A lot of kids have issues with dairy and soy. For some kids, it is wheat-gluten. For other kids, it is corn. Even if the child's blood doesn't show an "allergy," some foods nevertheless seem to affect growth negatively. Sadly, a lot of doctors dismiss diet as a factor unless they have a blood test to "prove" it. In my son's case and my friend's son's case (her son was FT), dairy and soy inhibited growth. My daughter had a really hard time with formulas made of corn syrup. And I've read anecdotes about wheat-gluten issues.

This is one of my favorite threads written by a mom who was trying to figure out her child's lack of growth:
http://www.inspire.com/groups/preemie/discussion/feeding-behavioral-vs-medi cal-our-story/

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Katek has some very good points and I also love that post about behavioral vs medical. Once we removed dairy and soy from my DD's diet, she started gaining weight better. We actually have a g-tube and still struggle to gain weight. A tube is not necessarily the answer for weight gain, at least in our case.

Also, have you talked to a pediatric dietician? The may be able to give you some other ideas on how to add cals to her diet. We use olive oil to add calories without much volume. DD does not tolerate doucal very well, but does well with olive oil.

Have you had a milk scan done? This will check for both reflux and delayed gastric emptying. We have had 3 upper GI tests done since leaving the NICU. None of them showed reflux even though we know our daughter has reflux. The only test that has ever shown her reflux was a milk scan which we finally had done 6 months ago (we did it to check for DGE).

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My daughter was diagnosed with failure to thirive as an infant. her lack of growth stemmed from celiacs disease (not put on diet until she was 8 at my insistance due to consistent negative blood work) and an undiagnosed ASD. The ASD really made her burn through calories as an infant and toddler. Later on, I think the Gluten sensitivity kept her from absorbing what she was eating. she is still small for her age but is one her own growth curve and is actually increasing her growth since going gluten free. Can't wait to see her percentages in May at her yearly check up. Shes eating me out of house and home now!

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My LO has seen 3 different pediatricians (his regular, one in the US, and the follow-up one from the NICU) - only 1 of the three was really concerned about his weight, because he has had 5 stages of weight loss due to illness. So, although he is quite behind weight (18 pounds at 18 months), in my charting, he has LOST over 5 pounds when he was ill (besides the fact that during the illnesses he wasn't gaining, so in reality, it should actually count as more). Therefore, if he HADN'T been ill those times, he would be a minimum of 23 pounds now, which isn't that far off (still small, but better).

The dr that really has an issue with his weight is his GI dr, who really annoys me but is the only one we can see (government medical system - you don't get any choice of drs) - she is the only one who has actually written 'failure to thrive' in his file; but she wouldn't listen to me about his weight losses, and she just berates me as a mother for his not gaining weight. She sent us to a dietitian, who told us "what do you want from me? feed him every time he is hungry, he will gain weight." - found out she is a dietitian who focuses on diabetics, not pediatric failure to thrive, so it was a waste of time and energy to talk to her.

We just beef up his milk/formula - we mix it higher calorie, and combine the powder for pediasure (we would go straight ped but baby doesn't really like it), toddler milk, and stage 2 formula; or I will add pediasure powder to regular milk - with his pediatrician's blessing. He still doesn't eat a lot of food, but he doesn't have any aversions to anything - just a small eater.

He has 3 appointments this coming week, one with the GI dr - I dread seeing her, but she is checking his liver function too, so I have to see her. Hopefully, his updated weight will be higher than 18 pounds this month!

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Surfbabies :) I was so in the same boat as you when my LO was a baby too !! My daughter needed gtube at 11 mths was not gaining weight at all refusing bottle all the time !! I had to keep getting up every 3 hours still to feed her she will drink some and then refuse !! Going to the GI constantly, doing all tests , endoscopy they did those like 3 x's.. everything was fine.. Upper GI... fine... She was born 3 mths early 26 wker.. only 1lb 2 oz.. So she came home eating great then it was like 3-4 months later when she wasnt drinking.. throwing up all the time.. So we did the gtube formula all the time, throwing up, still noone knew why !! she was getting like 26 oz.. Sometimes though she would eat baby food too but then will stop ! So finally we have decided to try to take her off the tube no formula and see if she would eat.. her doctor was not too happy.. she said fine only for a week.. Then I'm like it's not going to take just a week to get her to eat, finally we saw another doctor and then he was the one suggested to cut back her amounts of formula, and little by little she will eat.. then kept going back to him everytime keep cutting down, then finally he said lets stop the tube.. So then finally she will eat more :) Slowly gaining weight..
Now she is 5 1/2 eating now for like 2 yrs or so.. She's still very picky only eats her favorites... We use the tube only for meds now... Hopefully she'll over come her fear and take meds by mouth... But that is my story.... I didnt want the tube, but you know what it did help her gain a bit..
Good luck to you :) Also maybe you should have your child see a nutrionist she could help you out a lot.. It did help us alot :)

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