Infantreflux.org | Need to vent..... They are all idiots!

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May 18, 2006 at 5:35 pm #8294

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I posted last week about our re-evaluation at the feeding clinic. For a quick recap, we were told that Noah is a normal 13 month old with normal feeding skills. We were told to discontinue all sleep feeds (we do 2 of these), and to discontinue his morning bottle. They wanted us to do 3 meals a day and 2 snacks and give him the cup with each at each sitting. We were instructed to continue to give him formula since he isnt eating a wide variety of table foods to get sufficient vitamins. We discussed continuing his 30 cal per oz of formula to boost his calories. We were told that we no longer needed to come back for further therapy.

For those of you who have read my posts, you all know that Noah is not a “normal” 13 month old when it comes to his eating. However the 3 minutes that they watched him eat pureed bananas was enough for them to determine that he has normal eating skills. So they wrote up their little report and sent it off to my Ped.

Now, today I get a call from the Ped’s office and the nurse tells me that after looking over the report, the doc thinks that we need to take Noah off of his Good Start Soy formula and give him whole milk. He also wants us to discontinue boosting the his calorie content. He feels that by giving him 16 – 20 oz of forumla at 30cal per oz, that we arent giving Noah the opportunity to get hungry. Therefore, he wont want to eat any more solids. And since his growth is so good, he should do ok on less calories! I have to tell you, my jaw dropped to the floor when she told me this. Noah is 13.5 months old and is 20 lbs and 7% on the growth charts. How the hell is that good growth? I’ve been busting my butt to get calories into this baby and now they are telling me to go straight to whole milk and dont add more calories! Are they freaking crazy? Its bad enough that the feeding team wants us to drop all bottle/sleep feeds, but now the Ped wants us to go straight to whole milk that has much, much less calories! Are these people idiots or is it just me? I dont know what to do. I already decided that I wasnt going to cut his bottle/sleep feeds because he is down to 16 oz per day. If I go to whole milk (assuming he can tolerate it), he will be going from 30 cal per oz down to 18 cal per oz. Plus he wont be getting the vitamins and minerals from the milk that he gets from the formula.

My question is: would you cut out his bottle/sleep feeds and rely soley on solids and a cup? And would you drop the formula at 30 cal per oz and go to whole milk with no added calories? Do you guys think these people are ignorant, or is it just me?

lisaann2006-5-18 17:43:56

May 18, 2006 at 6:48 pm #8297

Anonymous
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I am so sorry you have to go through this again and again. They are just idiots, like you said. I think it was Lori who said she wished that some of these doctors had kids with similar eating problems as ours… they would not be discharging/discouraging/ignoring us like they do. Really, we think that Matthew is healthy so i cannot begin to imagine what it is like for mothers whose babies are not doing that well, but no eating is so frustrating and you have to work so hard, and then they can throw up so easily, and you are set back by some foods, a cold, teething… i know all children go through these but for babies who really do not eat these are major catastrophic events and everyone just seems to think that they are OK???

Sorry, needed to vent too! I have learned a lot through this process – i really want to think that i have learned to be patient and listen and just take every day as it comes BUT THESE PEOPLE WHO REALLY KNOW NOTHING OF WHAT IS REALL GOING ON JUST MAKE ME SO MAD.

Sorry Lisa – you should not have to go through this. I think you know best when to trust your instinct and when to listen to them

May 18, 2006 at 7:11 pm #8298

Anonymous
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Lisa, I’m so sorry you are going through this too. I just went through the same thing with the feeding doc. Trust your instincts, I agree with Thais. I too said I wasn’t ready to cut back so many calories. Things need to be done gradually. They try to apply rules that work with regular eaters to non-eaters and it drives me crazy. They say things like, if you cut out the bottle then they will eat. Well I can tell you that isn’t true- Hailey will go for a day without eating. It won’t make a difference. They don’t know our babies like we do, they see them for 5 minutes and pass judgments. Go for another opinion at another clinic if you can. You know Noah best. For what it’s worth, I would not stop formula now either. Our ped wants Hailey on formula until 18 months. I’m so sorry that you have to deal with this. Hang in there.

May 18, 2006 at 8:01 pm #8307

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I wouldn’t quit the formula either. They’re nuts! I kept my first two (who had no feeding aversions) on at least some formula until they were 15 – 18 months old and I felt they were eating a wide enough variety of foods to get the vitamins, minerals and fats they needed. Whole milk and nothing else is really ludicrous.

I probably shouldn’t give any opinion at all here because I am not in your shoes, but as an objective person reading your posts (and Lori’s)I can’t help but think at night when I am drifting off to sleep about what I would do if Myles would only sleep feed. I’ve thought a lot about this (because I really feel bad for you and your baby and wish there was some easy fix, but I know there isn’t).

Anyway, what I think I would do is start slowing weaning the night feedings. First I would make bottles with 1/2 “30 calorie” and 1/2 “20 calorie” formula, so he is still getting formula, still getting the same volume of food so his stomach doesn’t shrink at all, and still getting the same amount of hydration. I’d do this for a week or two and if there was no improvement in daytime appetite I’d start making bottles with 1/3 “30 calorie” and 2/3 “20 calorie formula”. Do this for a week or two. Then reduce it to 1/4 “30 calorie” and 3/4 “20 calorie” formula. Eventually hopefully getting to 100% 20 calorie formula. If still no improvement in daytime appetite and eating then and only then would I maybe reduce the volume of night time feeds by an ounce per bottle per week until I got to perhaps 2/3 of what he’s currently getting at night. If this too, failed then I honestly would be at a loss and would not totally cut out night feeds because these kids need hydration and nourishment. Maybe I’d try dropping one or two nights and see what happens, but I don’t think I could or would just stop night feeding if that’s all my baby would eat.

Are you thickening his bottles? If you are maybe you can gradually reduce the amount of cereal along with or after reducing the higher calorie formula. The gradual approach just seems to make more sense to me.

Of course I am not an expert and I have no experience in this whatsoever. I’m just sharing what I would do if I was in your very difficult situation. I truly hope that you find some way to get Noah (and Hailey) eating and not dependent on these night feedings. I can’t imagine how difficult it must be for you and I know you must be so worried.

May 18, 2006 at 9:09 pm #8313

Anonymous
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Lisa – Brian is 16 month old, and he is still on 14oz of 30cal formula every day, I will not take him off the formula as long as he is taking it (maybe not long anyways because that broken nipple). For the past two days or so, he has taken 1-2oz of Nesquik’s flavor milk (they are 25cal/oz) from a straw cup here and there, and I want to try Pediasure soon, maybe you can let Noah try those.

Don’t worry about those crazy doctor. I remember you mentioned not long ago that Noah was taking 24oz of 30cal everyday, when did he drop to 16oz per day? Is he taking in more solid since he is taking less formula now?

May 19, 2006 at 11:12 am #8341

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Hi Lisa. I totally understand your frustration. I also responded to your other post. Not only has Emma not ate anything for 2 months she is very cranky/fussy and I don’t know what is wrong. Emma is 14.5 months and only weighs 21lbs but my GI and ped says she is in the 25th percentile. She has only gained 1lb in 2 months but her GI is more worried with the crankiness right now b/c she is thinking that it is connected to her not eating so if we can figure out that then maybe she will eat. I also posted about them putting her on Atarax, an allergy med. They are thinking that her GI tract is all messed up due to the flu and a bad milk trial. Have they ever mentioned this to you??

What tests have you had done? (Sorry, I don’t get to come on here as often as I wish) Emma has not had any testing done. I am not against them at all but Emma continued to get better so I didn’t think it was needed. But since the past 2 months have been he** I am rethinking that. I feel like I am going crazy b/c you are running 10 things through your head and you don’t know which one is the actual problem. At least if I have the tests done it can give me some piece of mind either way, that’s if they are accurate.

I don’t think there is anything wrong with trialing milk but if he is not eating my thinking is that it should not be their only source of nutrition. My thinking when I did the milk trial on Emma was if she passed that would give her more foods to eat and then maybe she would eat more, I did not do it to make it her only source of nutrition. Only when she was eating a balanced meal would I stop the formula, no matter how long that might take. Another thing is I would not start out with giving whole milk that might be too much for him to handle. I started out with ice cream, yogurt and cheese and that took 2 weeks to build up in her system

Emma still sleep feeds, and she doesn’t sleep through the night. Sometimes she gets the most calories at night. I know how frustrating that is too. If I try to reduce her bottles to get her to get hungry enough to eat food it is he** at my house. She will literally starve herself and cry nonstop. Then she cries so much she builds up so much gas that you spend the next couple of hours giving mylanta until all the gas is out. I have tried to put her formula in a sippy cup but she gets too much air and gets bloated. I still have to use liners in her bottle so I can get the air out first. I don’t think it is a bad idea either to see if he gets hungry enough to eat food but I would only cut down like one bottle to see if he does. I hope he does but if he doesn’t keep trying. It all is frustrating and so exhausting and someone not living in our home doesn’t get it. I don’t think you are crazy at all, I don’t agree with them at all. It sounds nice on paper but in reality it just doesn’t work like that. It takes a lot of time and patience and still they can have something going on and you have no idea what it is. I am in the same boat as you and I wish we could get some answers that are actually doable. Don’t let them get you all worried. All we can do is to keep offering them food and hope to god they start eating better. Please keep us updated and if I get any ideas from my GI I will definitely pass them on!!
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Need to vent….. They are all idiots!