Hi, I looked through previous posts but couldn't find one similar to my dd's situation. I'm sorry if this has been covered before.

Katelyn is almost 8 months and started arching/crying at the breast at 2 months. We finally realized it was silent reflux at 4 months and she started on Prevacid. She got better in every area except feeding, which continued to worsen. She will now stay on the first breast for 2 or (rarely) 3 letdowns before pulling off. She will sometimes take another letdown or two from the other side but only if it comes quickly. She refuses the bottle.

I don't think she's in pain from the reflux anymore but she hates the feeling of refluxing. Every time she feeds she does ok at the very beginning but then I hear the reflux come up and she starts wiggling, arching and pulls off. We were spoon feeding thickened BM after each breastfeeding session but she started to fuss before/during so we stopped in fear of creating an oral aversion. Instead we use a syringe (which she doesn't seem to mind) or my husband squirts milk into her mouth with a sippy cup (which I have found she doesn't really like). With the sippy she'll turn her head away, close her mouth, etc. She's not completely against it though since she will try to grab it and put it in her mouth.

She also gags/chokes whenever we feed her solids, even stage 1. The only things she doesn't gag on are bananas and avocados, very smoothly pureed. She sometimes throws up if I give her even a small bite of food. Understandably she will not open for solids but doesn't mind playing with the spoon and putting it in her mouth.

We saw an OT who said her mouth was not sensitive. She watched me breastfeed and it happened to be a very good feed where Katelyn went on both sides. The therapist thought she just likes a fast letdown but I disagree, I know it's because of the feeling of refluxing. The therapist said since she will not open for solids/throws up just let her play with her food to get her used to the taste. BTW Katelyn does not aspirate or have nasal congestion.

I'm worried because although she has not yet lost weight (due to us supplementing after feeds) I'm afraid she will. Like I said she doesn't do well with a sippy, bottle or solids and the breast is an extreme struggle every single feed. I know she can't keep going like this forever and I really don't want to see her lose weight or get a tube.

We are going to see a new OT closer to our home on Thursday and was wondering if you a.) have suggestions as to questions I should ask her/important points to mention and b.) any ideas on how to help my dd eat better?

Sorry this is so long. Thank you so much!

Hi,

we have a similar history. DS was diagnosed at 4 months, started PREVACID, but at that point it was too late. Ethan actually stopped breastfeeding completely. I ended up pumping and we succeeded with the Medela bottles (after trying numerous others). We had to put him in the bouncy seat to eat, the only place it would work. Will she take a bottle? How about some distraction? We used Baby Einstein videos at times.

If you are worried about calories, "fortify" her milk with cereal, formula and/or maybe some veggie oil.

We let him drink the stage 1 baby foods from an open cup at first, so he could get used to the taste.

Let me know if you have any more questions.
Tina

Hi Amy:
I am so glad you have written about your daughter’s feeding issues. If you don’t mind, I am going to need a little more information so I can give you better direction. Here are my questions to you:

1. What were you thickening the expressed breast milk with? Anything other than Simply Thick is broken down by the wonderful amylase in your breast milk and will not stay thickened very long.
2. How do you know your daughter does not silently aspirate or have nasopharyngeal reflux into her sinuses without regurgitation out the nares?
3. Has she had a modified barium swallow study?
Amy, even without seeing your daughter and with the little history you have given me, I can tell you that I have some differing opinions about what is going on. First of all, have you tried pumping off 2-3 minutes prior to nursing? This can assist to pump off a let-down or two while pumping off the thinner fore- milk and getting to the thicker hind milk. I have never known an infant to like a quick let-down. Anytime you have a large and fast moving bolus, the potential to aspirate, even silently or without a coughing response, is greater. You said she refuses the bottle. Which nipples/bottles and liquid consistencies have you tried?
Maybe she is not in true “pain” from reflux, but from your post it appears as if she is experiencing some obvious discomfort which actually can be some mild reflux pain. With the spoon feeding, I again ask what you were thickening your EBM with? Using a syringe or sippy to squirt milk into a baby’s mouth can create aversion depending on the way it is done. Again, if the bolus or liquid amount is too large and fast and the baby is unable to control it, the baby may shut down. I am glad she is grabbing the sippy to put it into her mouth at times. Do you have one with handles so she can attempt to self-feed with minimal assistance?
Your “mama instincts” are correct. Katelyn absolutely has oral hyper-sensitivity associated with GER. Us mommies are typically the “safe zone,” which means we are warm and nurturing, and a baby with GER and dysphagia will tolerate nursing over any form of oral intake because they consider it as safe from their mother. Anytime a new food texture is introduced, gagging and vomiting is typically a defense reaction to that sensation and a baby’s mechanism of protecting the airway from something that might make their tummy feel bad. I do agree with sensory play as a means to help Katelyn transition to solid foods, but that alone is not going to cut it as you know.
Amy, answer the questions above and I will get back to you. Let me know what your new therapist would like to do and I will tell you what I think.

Sincerely,
Robynne Elkin

Thank you for your response! My answers are below.
1. What were you thickening the expressed breast milk with? We were using oat or barley cereal and you are correct, we noticed that it would get thin quickly (we didn’t know why). After reading some of your other responses I ordered a trial pack of Simply Thick last week. It should be here Fri.
2. How do you know your daughter does not silently aspirate or have nasopharyngeal reflux into her sinuses without regurgitation out the nares? We do not know, she has not had testing for this
3. Has she had a modified barium swallow study? She had an upper GI with barium (is that what you’re talking about or is it something different?). I don’t think they were specifically looking for aspiration, it was more to check that her anatomy was ok (it is).

Amy, even without seeing your daughter and with the little history you have given me, I can tell you that I have some differing opinions about what is going on. First of all, have you tried pumping off 2-3 minutes prior to nursing? I have not tried this because she pulls off if the letdown does not come quickly. She seems most comfortable when there is a letdown. When she is sucking trying to get one is when she does the most arching, kicking, refluxing, etc. She usually (not always) settles down during a letdown although sometimes she does choke on the reflux. I also do not have much milk because my supply has been affected (now I pump after every feed but unfortunately I did not start doing this soon enough and my supply was already down). I do not think she’d be patient enough to wait for one of the later letdowns because they take longer. Even if she did because my supply is so low now I think she’d only get an oz or so. I would really hesitate to do this. This can assist to pump off a let-down or two while pumping off the thinner fore- milk and getting to the thicker hind milk. I have never known an infant to like a quick let-down. Anytime you have a large and fast moving bolus, the potential to aspirate, even silently or without a coughing response, is greater. You said she refuses the bottle. Which nipples/bottles and liquid consistencies have you tried? We have tried Madela, Dr. Browns, NUK orthodontic, and Adiri. She would kind of crew on them at first and try to open wide like for a breast. If she got some milk in her mouth and had to swallow she didn’t like that and would start fussing/crying. We have not tried bottles for a couple months though and have been focusing more on the sippy since she’s older. It’s the old Advent sippy with the soft spout so she can chew on it. As far as consistency we have only given her expressed breast milk, unthickened.
Maybe she is not in true “pain” from reflux, but from your post it appears as if she is experiencing some obvious discomfort which actually can be some mild reflux pain. With the spoon feeding, I again ask what you were thickening your EBM with? Oat or barley cereal. We only thickened the spoon feedings, not any other type Using a syringe or sippy to squirt milk into a baby’s mouth can create aversion depending on the way it is done. Again, if the bolus or liquid amount is too large and fast and the baby is unable to control it, the baby may shut down. So when we do use the syringe we need to make sure not to put too much in her mouth at one time? I am glad she is grabbing the sippy to put it into her mouth at times. Do you have one with handles so she can attempt to self-feed with minimal assistance? The Advent one came with handles but I took them off because when she grabbed it all the milk would spill and she wouldn’t get anything. I can put them back on though and just try to guide a little. Should we do water or milk for the learning to self-feed?
Amy, answer the questions above and I will get back to you. Let me know what your new therapist would like to do and I will tell you what I think. The new therapist told us that if she is not feeding well due to GER there is not much we can do except let her grow out of it. Since Katelyn will tolerate an open cup she suggested thickening some milk with cereal and feeding it to her from an open cup. She also said to keep trying solids twice a day. While we were there she had me put some solids on my finger and put it in her mouth. This actually worked and she did not gag. I then tried the some on the spoon and she took it without gagging. So then at home, I tried the thickening with cereal but it didn’t work because it got broken down too fast. HOWEVER solids are going slightly better. I’ve only had the chance to do them twice since our appt last Monday (trying to fit hr long feedings in with naps is hard) but she is slowly become more accepting of solids I think. She still turns away and doesn’t really like them but at least she’s sometimes opening her mouth and she’s not gagging anymore. I have to start with the finger and then move to the spoon; that does seem to help.
So I’ll keep trying with the solids but I would really like to find a way to get her to take a significant quantity of milk from something other than a syringe. Do you think we should focus on a bottle or keep trying with the sippy?
Thank you again for your help!

I replied to this the other day but now my response is gone! Here are my answers again.
1. What were you thickening the expressed breast milk with? Oat or barley cereal
2. How do you know your daughter does not silently aspirate or have nasopharyngeal reflux into her sinuses without regurgitation out the nares? We don’t know
3. Has she had a modified barium swallow study? No, just an upper GI


Amy, even without seeing your daughter and with the little history you have given me, I can tell you that I have some differing opinions about what is going on. First of all, have you tried pumping off 2-3 minutes prior to nursing? I have not tried this because she is extremely impatient and will not suck long waiting for a letdown. She also seems most comfortable during a letdown (although she still sometimes chokes on the reflux). In addition my supply is so low now there would be little left if I pumped beforehand (I now pump after every feed but did not start this soon enough so my supply is not nearly what it once was). I would be very hesitant to try this.
Which nipples/bottles and liquid consistencies have you tried? Madela, Dr Brown’s, Adiri, and NUC Orthodontic. She would be ok with it at first, she’d chew on it and open her mouth wide like for a breast. But if she got some milk in her mouth and had to swallow she didn’t like that and would start fussing/crying.
Maybe she is not in true “pain” from reflux, but from your post it appears as if she is experiencing some obvious discomfort which actually can be some mild reflux pain. With the spoon feeding, I again ask what you were thickening your EBM with? Oat or barley cereal. We only thickened with the spoon feeding, never tried it for the bottle feeds
Using a syringe or sippy to squirt milk into a baby’s mouth can create aversion depending on the way it is done. Again, if the bolus or liquid amount is too large and fast and the baby is unable to control it, the baby may shut down. Thank you for this information, we reduced the amount we squirt in each time
I am glad she is grabbing the sippy to put it into her mouth at times. Do you have one with handles so she can attempt to self-feed with minimal assistance? I had taken the handles off but put them back on. She mostly just spills a lot but does sometimes try to put it in her mouth


Amy, answer the questions above and I will get back to you. Let me know what your new therapist would like to do and I will tell you what I think. The therapist said there’s nothing to do except let her grow out of it if this is caused by reflux. She did have a few suggestions though. First, since Katelyn will kind of take an open cup she said give her milk thickened with cereal from an open cup. She also told me to feed her solids twice a day. While we were there she had me put some food on my finger and put it in her mouth and she did not gag. Then I did the spoon and she didn’t gag either. Once at home this method has somewhat worked but she still doesn’t like solids and it takes a lot of coaxing to get her to open up. But at least she’s not throwing up anymore. The thickening has not helped because the cereal breaks down too fast like you said. But I did order some nectar consistency Simply Thick and it should be here tomorrow. Should we try to give it to her in a.) a bottle b.) a sippy (we use the Advent one with the rubber chewable spout) c.) an open cup??
Thank you for your help!

Oh and one more thing! We went to OT again yesterday and the therapist had me try this bottle called Pigeon from Japan. Anyway Katelyn chewed on it like usual and just let the milk dribble out of her mouth. Then the therapist put her hand under her chin and cheeks and actually got her to start sucking and she drank really well for about 30 seconds! Actual sucking and drinking with no crying or anything. I have never seen her drink rather than chew on a bottle (except when she was like a month old before the reflux). We never got her really used to them I think.

But then after those great 30 seconds she stopped and we couldn't get her to do it again. She was back to chewing and letting it drip out and would get mad if the therapist tried to use her hands to get her to suck. She'd cry and arch and didn't want it. We tried thickening with Simply Thick to see if that would help her take it better but it was the same. Then I tried at home with nectar thickened Simply Thick and still a no go. She chews on the nipple but won't swallow the milk that comes out. Then she quickly gets frustrated and starts crying. Anyways, not sure if that means anything but thought I'd mention it.