Still gagging, coughing, choking during some feeds

[Anonymous]

My daughter Lauren (now 5weeks) was finally given some meds before we can get in with the GI next week who treated my son. First, we got Pepcid, but also called and got some Prevacid to hold her over (7.5mg 2 x a day). Doctors felt comfortable with giving it to me due to my son’s severity. We weren’t 100% sure if she had reflux but the meds so far seem to making a difference-she’s sleeping again (thankfully!!), and overall demeanor is so much better-no screaming episodes except for main needs, etc. We’re also still breastfeeding on elimination diet but mostly by bottle due to she had a month where she lost almost 2 pounds and she really just wont suck for any length of time on the actual breast. We use playtex inserts as lactation specialist said they were most like the real thing.

So here’s the question/worry-she’s still gagging, coughing, etc on the bottle during feeds. It is better-usually is starts after a burp break at 2 oz but sometimes it’s the whole feed. When she has a good feed, it sounds as if the milk is coming out fine and slowly, but bad ones, it sounds like I have her on a fast nipple-very loud and fast and uncontrollable. Is she the one controlling the speed of which milk comes out? Wouldn’t that happen in the beginning if she was sucking fast because of hunger? After she eats a little makes no sense to me. And sure enough, after she gags-she stops eating. It’s really confusing to me. But, also, could this be a normal baby thing? Underdeveloped tongue or sensitive gag reflex? Switch bottles?

It’s so hard because I don’t want to blame reflux for everything and miss something important.

[hellbennt]

what does lactation consultant say about the suck? la leche league?

I’d be curious to find out- maybe get back to the breast- if that’s what you want, of course…but i would want the suck checked out- maybe by a speech pathologist? you’re in NYC, right? maybe thais could help you with this? hmm…

[Anonymous]

Lactation consultant is pretty well respected in NYC-she always maintained her tongue was “undeveloped” so we were using the tube for awhile which did nothing but make Lauren want it to come in easier. Also, she gets frustrated with my letdown sometimes which makes her stop sucking. This is why we’re always using bottles. Even if we get a good feed on the breast-we weigh her and it’s only a fraction of an oz. Also, did I mention I just got a mastitis??!! I really wish breastfeeding was more joyous but honestly, right now, I’m doing it for her health and am driven to maintain it at least for 3 months.

I really wonder if another bottle would help. The playtex one seems fast to me but then again, I’ve seen her have no problem on it too. Always perplexing!

Thanks Laura for all your support on this-it means alot.

[Anonymous]

Thanks Laura for your PM… funny you mentioned about the suck because i just answered a post this morning regarding this on teh feeding aversions forum!!

Tracy — sorry you are going through this. I must have missed some posts because i did not get the impression that she was gagging and choking last week.

Like Laura said — i would get the suck checked up. I wish i had known as much as i do re feeding when MAtthew was younger. He was assessed by someone who is very well respected and they assured me there was no way he could have sucked from the breast, which he did not, given that he still does NOT have the skills or strength to do it!

The SLP we saw also believes that seeing Matthew now, part of the problem could have been just underdeveloped muscles and low tone in his trunk and head/jaw/tongue etc. She does oral motor with all types of kids, disabilities and not, and i really trust her.

So, first, where did you give birth? The hospitals usually have SLPs there to help preemies learn to suck etc and they may be able to check her out. Otherwise, your ped should give you a referral or recommendation for an SLP that could help out. I would suggest you get someone who specialises in oral motor. There is a great/very well respected SLP in Norwalk but i have no idea if she does babies… maybe she does? Her name is Lori Overland. Maybe give her office a call… otherwise, the SLP that evaluated Matthew is Sara Rosenfeld-Johnson. She has a website called Talktools.net… she will answer emails/her office will and they set up evals or she may be able to direct you to someone in NY who can help?

If i were you, and this is just me… i would give Neocate a try. Especially knowing that Ian recovered really quickly after being on Neocate for a few months. He prob could just not handle the proteins, and yet by the time he was 15months he had outgrown all of his issues… which prob means milk had something to do with it?? but i know that is a personal decision. I guess having had a baby with a feeding tube and a feeding aversion, i really do not consider breastfeeding a priority at all, so for me, it is a no-brainer…. maybe you could keep pumping, since it is what you are doing anyway, and freezing and try Neocate for a couple of months?

Also, now that i am thinking about it… did Ian not have an uncoordinated swallow? Which is why you were giving simply thick??? who diagnosed him with that? he did pretty well on that for a while? i woudl talk to the same person who suggested it in the first place… see if Lauren has a similar pattern.

It must be so hard not knowing what is going on… hope you get some answers soon. HUGS

[Anonymous]

Thanks Thais. Alot of what you say makes sense and I’m definitely going to look into an SLP on Monday. They said her suck was a tad underdeveloped by our Lactation consultant and I have seen her drink a bottle really well but it’s not consistent at all. Some good, some bad, some mixed.

Ian actually went on Simply Thick only after he was put on Elecare. He had no problem on regular formula with swallowing but the Elecare was so thin, it kept going down the wrong way and it enhanced his reflux. Also, I”m on the elimination diet for breastfeeding and have been since day one–no milk, dairy, soy, anything. Really bland. I’m actually terrified to go off BF because she does seem at least more comfortable than Ian did. Believe me, I’d LOVE to stop pumping!

So they really think Matthew’s feeding aversions came alot from the suck? Reflux too, right? So interesting how all this fits together. How’s he doing these days?? Are you getting excited for number 2?

[Anonymous]

Well, normally kids can do Elecare with no problem, so i would see if someone helps you figure out if she needs thicker liquids for now. I know that you are on the elimination diet — i just have no clue as to what really happens to breastfeeding with it and whether proteins still make it in there. A lot of the moms on the other forum have been given the same advice as i was… just start with Alimentum or Neocate, even if they breastfed previous babies… so i just do not know if anyone has asked if there is a difference… maybe you can ask Moon when you see her.

I think Matthew has both reflux and a really weak/low tone upper body. So both factors have probably contributed to his feeding issues. Reflux runs in my family and even now, he still has tons of reflux, even on the prevacid (we know because he still throws up regularly, although not that frequently). But it has become really clear that he has muscle weakness and i understand how that is affecting his eating, so that was probably always there… who knows… He is doing great, thanks for asking. Sweetest little boy around and happiest toddler too — i think we have had 1 tantrum ever and he will never cry! Now we are dealing with speech delays and feeding issues, that are slowly getting better. His speech is not clear, mostly due to his weakness… but the guy is putting 6-7 word phrases together all of the sudden and he is copying everything that everyone says. This is a kid who said nothing 1 month ago, so we are amazed!

I am so so excited for #2… Dave and I just spend hours thinking about what his personality will be like, will he look like Matthew, how his little voice will sound… uggh cannot wait!!! Not looking forward to the sleepless nights and possible problems!!?? but we will make it through all of it i hope!!

let us know what Moon says… and also, just look into the thickened liquids (dysphasia) possibility…

[Anonymous]

I am feeling for you. It has been a long time since I posted because we are so busy, but I thought I could help with this one. Aiden, my son, still has problems with thin liquids. His feeding and swallowing specialist has given us things to look for signs of aspiration and ,choking and gagging during feeds, is more a problem from the thin liquids then the reflux(according to her). I would definitely get her checked out by a SLP. Aiden was just like that as a baby. It is so scary and I am sorry you are going through this. I will send lots of hugs your way.

[Anonymous]

tracy, it is possible that she is just having a little trouble because of her age. i really had trouble nursing my twins early on. it was so awful that i told kevin i just couldn’t do it—-and i had successfully nursed two other babies before them. i decided i would tough it out until they were 6 weeks old and then i was quitting. they were being bottle-fed with a higher calorie formula and i was pumping to keep my milk supply up. since the bottle was easier to drink they didn’t want to nurse at the breast. i finally got it all worked out and ended up nursing them until they were about 15 months. i was glad i hadn’t given it up—-but it was hellish for the first little while.

i hope you get i all worked out. if time doesn’t help, hopefully some of the other ladies suggestions will.

kevieb2007-09-10 11:47:43

[Anonymous]

could be aspirating??

[Anonymous]

If the PPI worked, it makes me think the reflux is still bothering her. Moms know best so just watch her closely and you will probably notice some tell tale signs of reflux if that is what it is yet. If she is refluxing, often times the thickened feeds will bother that more – doesn’t sound right, I know! Do you have faith in your doc? If so, you could go in and nurse her there and see what the doc says.

[Anonymous]

Congratulations on your little princess! (Sorry, I’ve not been around as much lately and I missed it). I love her name. It’s very pretty and goes well with Ian.

I hope you get it all worked out soon. Eliana’s nursing/feeding habits were very inconsitent and perplexing intially. She was my first refluxer so I had no clue that reflux could be the problem. Sometimes she’d latch on perfectly and nurse beautifully, but other times she acted as if she had no idea how to nurse. Gradually the bad feedings began to outweigh the good and eventually it became impossible to feed her. I hope that doesn’t happen with Lauren and that you find answers soon.

[Anonymous]

Thanks everyone. It’s been a really awful few days. Lauren’s eating is getting worse as far as gagging, etc. Now she started sometimes not swallowing. The bottle comes out, she leaves her mouth hanging open and it all just falls out and get’s everywhere. I don’t understand why her suck and swallow are getting worse as time goes on and not better? Is it some kind of self protection from pain?

We saw the GI and upped the prevacid (18mg divided in two doses). Dr. seemed to think we should switch to Elecare if she doesn’t improve (we’ve even now added a bottle of it a day to get her used to the taste). But I swear, even with the med increase, it’s gotten worse. Lots of arching, stiffening, and really loud screaming. Only 1/2 oz to 1 oz every hour. I know it takes 2 weeks to kick in, but shouldn’t it get a little better not worse? I’m getting so nervous about a feeding aversion or maybe she’s already done damage to her esphogus? While her temperment overall is handling this better than Ian did, her feeds, I feel are worse. We’re trying to find a SLP that specializes in infant motor and it’s like a needle in a haystack right now (Thais if you have any ideas where to look..I called Mt. Sinai and couldn’t find anyone who knew). Oh, and we’re on day 12 of prevacid as well.

GI also said uptake my water drinking to 12 glasses a day and see if that helps with pooping. If not, she said she would recommend barium enema because breastfed babies at this age should not have a hard time for over a week. Also, if sucking/swallowing doesn’t get better, we’ll have to look into tests for aspirating and dysphasia. If her oral motor is getting worse over these days, wouldn’t dysphasia show up earlier? She coughs like crazy too.

Sorry, lots of info! I’m venting to you all so I don’t make a panic call to the GI. Anyone have any ideas? Maybe she’ll feel better after Elecare completely for a full week? Maybe this is her 6 week peak? Should I stop worrying until the 14 day kick in period?? HELP!!

Thanks ladies.

[Anonymous]

Not being there to watch and hear, I still think it is the reflux. When you say she only takes .5 to an ounce and is arching/stiffning/screaming – that sounds like reflux. That being said, often times reflux is aggravated by *things* that make it worse. Allergies/intolerances for such a little one would be my thought. When you started the TED did that seem to help? If so, that would indicate that allergies/intolerances were playing a part in all of this. If so, it is SAFER to go on Neocate or Elecare because you won’t be wondering the whole time if it was something YOU ate…. However, babies who are on Neocate/Elecare are not always symptom free, either. Just trust your heart as to what you should do. It is so hard when they are so little.

The enema makes me nervous. BF babies usually don’t have trouble, but if she insn’t taking much IN, not much is going to come OUT.

You just went through this with Ian so I am probably telling you things you already know, but as I remember, after having a newborn, sometimes it is hard to think clearly – and you have Ian to watch inaddition to this new one!

I think it is WONDERFUL that Ian is taking MILK and not on a PPI. That would be great if Eliana would follow in those footsteps.

Does she take a pacifier? If yes, then I would think her sucking was ok – if she can keep it in and suck on it.

I hope she feels better when the PPI has totally kicked in. Honestly, it took 14 days before we saw much relief for Carson.

I send BIG HUGS!!!!! I bet she is quite a little cutie! Keep smiling at her! It will get better!

[Anonymous]

18 mgs a day of Prevacid may not be enough. Eliana was never on a PPI and her feedings were a nightmare for the entire 9 months that she had reflux. I don’t know how I managed to keep her alive because she hated to eat. Myles feedings were getting worse and worse as well and he got to a point where he would never take more than an ounce and would be content to eat nothing for hours on end. Things finally turned around for him once he was on the marci-kids dose of Prevacid which for him was 10 mgs / three times daily. If she’s not better very soon I’d push for a higher dose.

You’re not using the compounded Prevacid, are you? If so there could be a problem with how it’s being made.

[Anonymous]

Sorry to hear that things are not getting better… after i posted the last post here i went back to a notebook that i kept for Matthew early on… someone asked me on another post if i thought if Matthew had symptoms of dysarthria… well in the notebook it said that i did ask the doctor to look into potential dysphasia because it had seemed to me that Matthew had swallowing problems or coordination problems and he blew me off saying no way… i wonder if Matthew had has some tests done then, they would have also noticed his dysarthria early on…

My point being — if you have any doubst about her swallowing and coordination, why not get a modified barium? children that experience eithe reflux or dysphasia have very very similar symptoms, which is why you need to know if the dysphasia is causing any aspiration. The modified barium is just like an upper GI — she will not notice… it will show if she is aspirating, so you can rule that out? That would be what i would do right now…

As for the SLP — did you call the people i told you about??? If they were not able to help out, then i have no idea who would…. again, the people were Lori Overland (she is in Norwalk and i do not know if she does infants but she is well known for treating feeding issues… or email Sara at talktools.net and explain to her that you have an infant and are not sure if there are any issues with coordination and if she knows any SLPs around (She had a clinic in westchester for 14 years, so knows everyone in/around the city) that could help. BUT i am pretty sure they will ask if you think she is aspirating… because our SLP at KKI said that if Matthew were to cough after drinking more than a couple of times in one session… she would have to do a modified barrium swallow… they cannot have a child cough and not check.

Let me know if these 2 cannot help… i have some more names around somewhere.

As for Elecare, you know my views on that + Matthew was on 30mg of prevacid at around 2months… why can’t she put Lauren on 30mg and see if it helps? + does she allow anything else in between like pepcid?

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