Our latest visit to the feeding clinic

[Anonymous]

All I can say is “What a waste”! We went for a follow up to the feeding clinic where Noah was evaluated by an OT, SLP, Ped, Nutrtionist, and a Child Feeding Psychologist. Before I tell you what they said about Noah, let me first tell you what feeding him now is like. He still gets 2 nighttime bottles that are sleep fed. He is starting to wake up and fight however. He gets an A.M. bottle as soon as he gets up and once again, he fights and cries during the whole ordeal. During the afternoon, he wakes after taking 1 oz and then I resort to walking around the house trying to get him to take his bottle. He wont suck, but instead swallows as it drips into his mouth. After many, many minutes of this, my arms give out from holding him in the cradle position, and I try to syring the rest to him. He now wont even hardly let me do that, and he fights and hits it out of my hand. Then I put the remaining into a spill proof sippy and give it to him to feed himself. He takes one or two little drinks and then starts playing with it. If I offer it to him, he hits it away. Next I take what is remaining of that and pour it into another sippy that has no spill proof valve. I hold it and offer it to him and sometimes I can get a little more into him. If that fails, I then put it back into the bottle and put on a really fast flow nipple where no sucking is required and again walk around and let him swallow that. Mind you, my goal is to try to get 4 oz into him per feeding, and it still takes all this work. Thankfully, he will do about 10 oz of purees per day, but he isnt thrilled about it. He will not hardly chew and doesnt do finger foods well either, nor does he eat table food.

Now, this is what I was told by all of the Medical Professionals who evaluated him this past week:

“Noah is a 13 month old boy who displayed normal and age appropriate feeding behaviors. He has developed normal oral skills and is ready to end sleep feedings and his morning bottle. He may initially lose weight without his guaranteed breastmilk/formula given during naps. His sleep feedings interfere with the development of normal feeding patterns. The first step is to offer scheduled and times meals including 3 meals and 3 snacks and milk in a cup offered every 2 – 3 hours apart.

Noah’s parents are concerened about his weight, therefore they continue to syringe when awake or sleep feed by bottle. He continues to be fed table food cautiously by his mom, who fears he will choke. Noah’s dad feeds a bottle when he is home with less difficulty than mom. Noah’s dad also challenges him with more food textures.

We do not need to see Noah again, as his feeding behaviors and skills are age appropriate.”

Is it just me, or are these people idiots?! Does his feedings sound normal to you? He fights bottles and cups, wont chew, doesnt eat table food, still sleep feeds etc etc. How is that “normal” feeding behavior? Not to mention, if I discontinue his 2 sleep feed night time bottles and his morning bottle, he will be down 450 calories per day! He is already falling off the growth chart. I was blown away when they told me I didnt need to bring him back to therapy anymore. If the only feeding clinic in town doesnt think we need to be seen, I guess my only alternative is to drive 2 hours away to the next Childrens Hospital for their feeding program? How ridiculous is this?!

lisaann2006-5-12 20:49:41

[Anonymous]

Lisa,

I’m so sorry. I really don’t understand what is wrong with these people. Last month when we saw our feeding doctor, he basically told me the same thing. He said that my stress about the whole thing has created this situation and that by sleep feeding Hailey I’m making it worse. He told me to cut out her night bottle which would drop her down to 2 bottles and about 9 ounces a day of formula and no solids. He told me that if I did this she would be hungry and would eat. He also told me that if this didn’t work after two days, then he wanted to admit her to the hospital (a regular adult hospital where he is chief of pediatrics) and admit her to the children’s ward for a week. There they would make me leave the room for feedings and would put a tray of food out in front of her and sit there and watch her to see if she ate it. I told him that there is no way that my high-strung, afraid of everything, screaming child would stay in the hospital and let me leave the room so they could feed her. She would scream and cry the second we went through the door- in fact she does- because that’s where his office is.

I don’t know what’s wrong with these people. I really don’t understand why they don’t get it. How could Noah’s feeding clinic say that his eating is age appropriate? Worse, how could they discharge you? I wish things would get easier now. I’ve been feeling pretty depressed about the whole thing the past few days…it just seems to be getting even harder. Are you guys able to get out of the house with his sleep-feeding schedule? I feel like we’re prisoners.

Anyhow, I don’t have anything really valuable to offer. I just hope that things get better for you guys soon. BTW, I have about half a can of polycose if you want to try it, I can put it in a baggy and mail it to you. Let me know.

[Anonymous]

Oh Lisa

That is such BS. You have every right to be upset. What type of people are these? I guess you need to have a tube to be taken seriously, r what?? I am so sorry you have had to go through this.

Don’t have much in the way of advice. Matthew used to be sleep fed and the ped told us it was a no-no and we stopped and here we are with a tube… so def they do not just get hungry and eat. That is all i can say. We stopped because we trusted his advice and he wanted matthew on a tube rather than any feeding with stress or sleeping.

We are going for our eval on tuesday… hopefully they will have some better advice i can share

[Anonymous]

The speech pathologist/ot i saw was adimit about synge sleep feeding being a No-No too, she said that they are more likely to aspirate that way. I would ask a supervisor about it, and ask to be re-evaluated. Wish things would get better for you guys, and you get some help for Noah soon!

[Anonymous]

Oh Lisa! I’m so sorry too. Again, no advice except go with your gut. You know what’s best for your baby.

BTW- I HATE it when they say ‘the father is great, but mother is anxious’ theory! Drives me nuts!! They’re just looking for an easy answer and the quickest way it seems is to blame the mother. We’ve only run into it once at the hospital with an over-zealous resident but I wanted to just wrestle her down right there.

Thoughts are with you.

Tracy (Ian’s Mom 9-26-05) Elecare and Prevacid

[Anonymous]

Lisa,

It sounds like these people want you to go from 0 – 60 overnight with changing Noah’s feedings. How do they expect him to go from sleep feeding and basically nothing else (except the purees) to eating three meals and three snacks a day plus milk in a cup? Did they evaluate the wrong child??

I can understand taking their recommendations as a goal to work towards, but it sounds like they want you to do it over night.

I’m surprised they didn’t suggest maybe initially reducing the amount of his sleep feeds instead of eliminating them completely. That would make more sense to me. If he was getting less at each sleep feeding, maybe he’d be a little hungrier during the day and maybe it would help him to learn to accept more solids. Reducing but not eliminating his sleep feedings would be a gradual change instead of an abrupt change, which would probably be easier for him and you. I know I wouldn’t be able to just stop the only way my baby was getting any fluids and most of his nutrition, and hope he somehow learns to make up for it. I’m no therapist, nor expert, but if I was in your shoes that’s what I would try.

Does he eat any baby cereal? Myles has been refusing most of his bottles lately, so I’ve been making really thin cereal for him and spoon feeding it to him. This way he gets a fair amount of breast milk or formula and some cereal.

I’m sorry the therapist seemed to blame you. It’s not your fault. I hope it gets better soon.

[Anonymous]

Christine,

I also thought that if I reduced the amount of formula at sleep feeds they would take more solids, but Hailey naturally cut out a 5 oz bottle and is down to 12-15 oz. She didn’t replace it with any solids either. But our doc says the same thing. For some reason it just doesn’t seem to be working in our case.

[Anonymous]

I am still waiting to hear a positive story from someone who has taken their child to a feeding clinic, do these people really know anything about babies that wont drink?

I can understand why sleep feeding is bad from a developmental point of view, but these people dont give any alternatives apart from starving the child and hoping that they will eventually become hungry. Dont these people realise that these babies are happier when they dont have to have a bottle and its only their parents dedication to making sure they eat that keeps them out of hospital?

makes me so angry. I know what you are going through and I hope that you are able to find someone that will give you some answers.

[Author]

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