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Discussion Starter · #1 ·
My son has a feeding aversion from the choking and aspirating. He gets really panicky when he has to eat. We're supposed to switch to feeding him solely with the haberman feeder, but he either just mouths it or he screams when we put it near his mouth. If he is eating out of it and aspirates, he freaks out and refuses to take it. THen if you try to give him a finger to suck on, he freaks out and screams for a while. Eventually he will be distracted but won't eat. He's started to eat mainly when he's asleep or drowsing. He's fussy cause he's hungry, but won't eat and just gets more upset when he tries. So how can we reverse the feeding aversion? Is it still pretty mild? What do you wish you'd known about it in the begining? I know very little about it, so please fill me in... I'm doing searches about it on here too, but most of it is about solids.
 

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Discussion Starter · #3 ·
We're seeing a GI, an ENT, and we've seen a speech therapist twice for swallow studies. The ENT says swallowing isn't really his deal so he sent us to a GI, who said that his issues are most probably developmental and not structural so that's not really his thing either, so he reccomended feeding therapy and sent us for another swallow test and consult with the feeding therapist. She said he does have issues but thinks its something we can deal with by using the haberman feeder and feeding flat on his right side (he aspirated the least in this position). He did really well with the bottle the first day (the day we were discharged) and actually seemed a little relieved, then he had a couple hour period where he was choking really bad and ever since then the bottle freaks him out. So none of the doctors or the speech therapist has seen him flip out over a feeding. Our next appointment is in a week and a couple of days. I'm not supposed to breastfeed him cause my oversupply and many gushy let downs make his problems a whole lot worse, but he has been so freaked out that in order to get him to eat I've just gone back to breastfeeding him because even if he freaks out he'll still come back to the breast. But he aspirates a lot more breastfeeding. So I can't decide which is worse, risking pneumonia or starving and freaking out. It was the GI that said he had an aversion, I thought it just hurt him to swallow or something, but the GI said what I thought was him pulling back in pain was actually him pulling back in a panic (he saw it).
 

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I'm hoping USAmma will jump in, b/c she knows a lot about feeding aversions. My son developed one primarily b/c of reflux, but being in heart failure and having heart surgery before that probably didn't help. AFter his surgery, he never really got back to nursing well, got afeeding tube at 8 weeks, and his nursing continued to decline down to nothing after another month.<br><br>
Honestly, I might just go for the feeding tube, to eliminate the aspiration, and try to keep the aversion from getting worse. Do they think the aspiration will get better? Have you tried thickened milk? That won't help with direct bfing ofcourse, but might help the aspiration, and help him handle feeding better. However, I don't know anything about the airway defects and how that affects the aspiration--I just know thickening helps lots of babies with aspiration problems.
 

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I have a 7 month old aspirator/oral aversion baby who is getting over his second bout with pneumonia right now. He never went to breast (he was in the nicu and unable to nurse in the beginning and never developed a suck). We used a Haberman in the beginning and then switched to the variable flow Avent bottles with thickened feedings. He didn't start getting pneumonia until we started adding oil to the breast milk. The lungs seem to clear mommy milk better than anything else IMO. Thickened feedings are supposed to prevent aspiration but if they don't you have thickener in the lungs too.<br><br>
It is all a catch 22 situation.<br><br>
By the time we were ready to tube feed my son he was in the hospital with pneumonia smiling and cooing for deep suction and crying and arching and fighting the bottle. The only times he ever cried were for feedings and he was barely taking 6oz a day for the month before we starting NG feedings.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/dizzy.gif" style="border:0px solid;" title="Dizzy">:<br><br>
Good luck with it all! I wish I had good suggstions or ideas for you. I have none. We are ahead of you on the road but with no idea where we are going and not sure if we are taking the right route.
 

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Discussion Starter · #6 ·
We haven't tried thickeners because both drs and the speech pathologist said it is way better to aspirate just breastmilk. Actually at first they said that they weren't too concerned since it was just breastmilk, not formula. And they have all told me not to give him anything but breastmilk.<br><br>
Today I have chosen the aspiration over starvation and let him nurse. Cause I just can't get anything into him with a bottle and he's totally miserable. He seems to be nursing okay. I mean he's still aspirating but when he chokes he'll go back to the breast after a break. It seems that he'll do well with trying the breast for a day or two, then get panicky about it, then take the bottle well for a day, then panic about it, then go back to the breast... etc. I don't know.
 

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Did they do different thicknesses on the swallow study to make them think he would still aspirate even with the thickened feedings? Often the thicker feedings don't get aspirated.<br><br>
My son learned quickly that eating wasn't safe. He cried when he saw us put together his bottle and only ate when he was half asleep and starving.<br><br>
He has been on the tube for about a month now and coos and goos when he sees us filling his feeding pump bag, just like my first three did when they thought I was about to nurse them. Life is so much more pleasant now.
 

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Hi. This is such a difficult situation. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I don't know all the particulars, but I know you have been struggling for awhile with this. I would just encourage you to try whatever you can to make feeding a good experience, and to try to get fully to the bottom of whatever is causing the discomfort. While you state that the milk coming out too fast is not pleasant for the baby, a normal, healthy baby with no other issues *most of the time* will not develop a severa feeding aversion because of this.<br><br>
My dd's feeding aversion was due to reflux, but now we know she has multiple severe food allergies and probably had them the whole time. It just took a long time to be dx because it was not the usual case of food allergies or the usual symptoms.<br><br>
Anyway, looking back I can see why things happened the way they did. But at the time we had only a fuzzy idea.<br><br>
Since he is still (thankfully!) willing to nurse some, maybe try to letdown the first part into a towel or cloth diaper. When the milk tapers off then nurse him so he's not getting the gushing milk. Nurse him lying side by side with him on the bed if that's his best position.<br><br>
My heart goes out to you. Feeding problems are SO frustrating and they hurt mothers so much because the very basic instinct is to feed your baby. It's so hard. Please update us and let us know how it's going. I wish I could offer some great advice to you in the meantime. I guess my best advice is to keep digging for answers if you feel that the answers are not clear, or that they are not going in the right direction. My dd's 3rd GI is the one who finally dx her.
 

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My son's aversions were from reflux. For a long time we pretty much only fed him while he was asleep. He still has problems with drinking at age 3 though sometimes I am unsure if it is structural issues or still the aversion. My son does or did aspirate as well but never had any lung involvement so it was minor and I think unrelated to his aversion or at least not a big part of it.<br><br>
Sometimes liquids at a certain thickness won't aspirate for some children. But my understaning is that you have to test it because some will aspirate even thickened liquids and then it is a bad idea. So if I were going to thicken I would have a swallow study to see if it still aspirated (did you do that already?) I think it is hard to thicken breastmilk or that is what I was told at the time.<br><br>
My only advice is fight until you get an answer that works. You do not want him to develop even more of an aversion and if you have to do a tube to avoid that I would. My son ended up failure to thrive and it was because of the aversion. Don't take this is the best we can do for an answer. I wish I had fought more for my guy. As far as nursing I wonder if you don't have supply issues could you pump a bit to get some of the milk out and I want to say that nursing laying on your back has the least let down force if he could lay on his right side and you on your back?<br>
In your situation and based on our feeding history which honestly scarred me as a mother I would probably be pushing for a tube. These feeding issues are so hard. My son has had developmental delays, low tone, other health issues, and now an autism diagnosis and yet the feeding issues have been the hardest thing for us.
 
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