Baby chokes a lot need lots of help

[Anonymous]

I am new to here, but have been reading all the wonderful information on this website for the last week. It has already helped me a lot, but I am still really confused about some things.

This will be a long post and I apologize for that!

First off, my son had reflux 7 years ago, but he never choked. He just screamed 24/7 and had feeding issues. He wouldn’t take Zantac despite everything I tried and therefore just had to outgrow it, which I thought he did until just recently when he started having chest pains that they say are acid reflux.

My daughter Kylia was born on 11/02/09. I am basically being a single mom since my husband is in training to leave to Iraq soon. I am exclusively breastfeeding.

Immediately in the hospital she was having choking problems, which the doctors and nurses kept saying was normal due to amniotic fluid and mucus. She seemed to get better though and didn’t have much choking from the 4th day to the 9th day. She slept well and hardly ever cried.

On the 9th day however, she threw up all over, started spitting up a lot, and crying a lot, so I immediately knew I might have another refluxer on my hands. So, I got her a wedge to elevate her on and that night I held her upright for nearly an hour after she ate and put her to bed on the wedge.

After 2 hours of her sleeping in her crib I was in the room on the phone with my husband when I heard her stir. I immediately went over to her crib to talk to her and when I did I noticed she had spit up coming out of her nose, her eyes were rolled to the back of her head and she was turning blue.

I started suctioning out her nose and mouth and putting her upside down. She went limp on me after a few mintues and I thought she was dead! She was unresponsive for about 2 minutes. I will never forget that feeling! I took her to the ER and she was admitted to the hospital for 3 days.

They did a upper GI on her and a lower bowel series (lots of xrays). Of course the upper GI showed reflux but nothing else showed up, like an obstruction or anything.

The doctor put her on Reglan (which I could punch him for that) and Zantac. The lactation specialist advised me to do blocks of feeding on just 1 breast, which I had pretty much been doing because she only wanted to feed for 10 minutes at a time, but I increased the number of hours per breast.

Two weeks later, and no better, I got her into the peds GI dr and she took her off Reglan explaining the possible permanent side affects it can cause and how if she would only need it if she had a delayed stomach emptying problem…..and she put her on omerpazole sp?. I also requested that she test her for MSPA and she didn’t find any blood in her stool nor did the blood work show any allergy.

That was 2 weeks ago and I have not seen any difference. Her choking is getting worse and she cries all the time if she is not eating. Now, when she is eating she is fine. She does sleep, but for relatively short amounts of time. She eats about every hour to 2 hours. For the first few weeks, she would do three 3 hour sleeping spells at night, but lately that has decreased to 1 to 2 hour spells.

For a few days I tried pumping and putting cereal in it (per GI dr’s advice) and then putting her to the breast (because I didn’t want her to refuse the breast afterwards) and it seemed to help a little but then I found this website and read about the enzyme issue. I think that the reason it helped a little is because I didn’t put the cereal in until right before she got it, maybe delaying the enzyme dilution issue???

I decided two days ago to buy some hypoallergenic formula to supplement basically because I didn’t know what else to do. I gave her two ounces of formula with one ounce of breastmilk and 1tsp of cereal. She took one ounce of the mixture great and 30 minutes later drank one more but at the end she threw it up and choked REALLY bad!!!! Scared the mess out of me! But she did sleep for 4 hours straight and did not choke or spit up for 5 hours! But I got online and found a different website where these parents had babies with similar issues that ended up having lung damage due to aspiration and they advise not thickening because it can cause worse damage than breastfeeding alone.

So, that brings me to now…I am stuck. She seems to be choking worse than ever, she cries A LOT (although she does give me brief moments of silence where she is quietly observing her surroundings and then it’s like she spit ups and cries). My son has ADHD and combinging the two is driving me INSANE!!!

Last night I just lost it and had to give my mom the baby to watch her for about 30 minutes, because I didn’t think I could keep going if I didn’t!

I want to get a swallow test done on her to see if she is aspirating and see if thickening would help and also to see if she has dsyphagia, but I am really really scared of all the radiation she has had. She had an extra in ER of her lungs, the uppder GI and the lower GI which had about 10 xrays of her lower intenstines.

I also did not take milk or soy out of my diet because the tests came back negative, but now I am going to. I tried to start yesterday after her screaming for 2 hours and me trying to take my son to tutoring and when I stopped to get him something to eat….I just got weak and got a hamburger. I tried to make myself feel better about it by taking of the condiments and only eating the patty and one half of the bun….but I know the patty has the same protein in it and that the bread has milk in it….so now I feel like a horrible, horrible mom!

Today i am going to go to the grocery store to buy milk and soy free things I can eat at home in abundance so I don’t get weak again. But I worry that I still will. I have always been a stress eater and what’s more stressful than a screaming refluxing baby and an emotional attitude giving ADHD 7 year old???? Oh and add that my husband is deploying and is not here???

Anyways, anyone that can give advice on how to proceed would be my angel! I need help and the military doctors do not know what they are talking about!

My basic questions are: 1) should I get the swallow test done even though she already has had so much radiation 2) how can I be stronger about the restrictive diet 3) has anyone had a baby that choked this much that the choking subsided (I read in a book called “Colic Solved” that the choking should resolve around 6 to 8 weeks due the baby being able to control those muscles better) 4) Any other advice I should know about when dealing with a choking refluxer?

[hellbennt]

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my computer does not like
me to copy from MS Word to Mozilla Firefox, so please ignore the underlined
words that are not hyperlinks…

hugs mama! hang in there! I called the calvary, lol!
the key to all of this is research and you’re well on your way! Kudos to you for reading Colic Solved!!!

ok first of all it might not be your diet, so let’s not go there…yet…
first let’s look at some possible signs of MSPI:
some
signs of mspi are, but are not limited to:

poop:

watery
poops, poops that are NOT ‘normal breastfed baby poops (normal poops are
mustardy/yellow w/ ‘seeds’ that you can see), green poops (some green poops are
perfectly normal! just not all the time!), mucousy poops (stringy like the inside
of a banana peel, curdy like cottage cheese, looks like jelly, looks like snot)

gas: foul-smelling, painful gas

grunting & straining to poop: looks like she’s
having difficulty passing a stool, but when it comes out it is soft

next: let’s look at medicine. I can make an educated guess that your baby isn’t properly medicated…you’ll want to first figure out the proper (highest) zantac dose to give as you get this all figured out…<!–
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Zantac dosing- my/other’s question (has axid & pepcid dose,
too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

conversion chart: http://www.sfca.co.uk/match/kilolbs.htm

in the meantime you can TELL your dr you need a RX for Carafate. the carafate is a quick-fix and NOT a long-term solution…but it’s SOMETHING…

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Carafate spacing
from PPI:

okay
I did a quick search and here is what I found… 3rd post down from Sheri who
unfortunately isn’t on much anymore… says space it 2hrs apart.

https://www.infantreflux.org/forum/forum_posts.asp?TID=10620&KW=carafate

then you can research PPI options- read Prevacid 101, the last post on the page:

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https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

and, last but NOT least, LOL!!! BABYWEARING SAVED ME/US!
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https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

hellbennt2009-12-09 18:55:55

[Anonymous]

Hi there! I’m not on here much anymore, and you will most certainly get more replies from other moms. I think that there are two things I would explore if I were you. Check first to make sure that she is getting a high enough dose of the medicine and that it is given correctly. Is http://www.marci-kids.com still the way to go moms? It was when my son was going through this, so try to check them out.

Also, as for the breasfeeding. I”m guessing that the lc asked you to block feed because she suspected OAL?? Is that correct? Do you spray out when your milk lets down or have multiple let downs during a feed? If that is the case, then keep doing the block feeding to help that. ALSO, try taking baby off the breast when you letdown. Let the milk spray out into a cloth and then put baby back on when milk spray has slowed. This will get rid of the high lactose (hurt belly) foremilk and allow baby to get to the hindmilk. It’s easier on the tummy and will help with the frothy green poos.

Ok, I’ll keep checking back to see what others say.

Hang in there. This is a great place, and I hope you find the answers you need.

[Anonymous]

hi rhiannon, first, the medication can take 3-4 weeks to start helping because that is about how long it takes the esophagus to heal. but, the medication is not going to stop the spitting up–although some people have said that it did slow it down some.

i would go ahead and havae the swallow study done—the potential for harm from aspirating is worse than the worry about x-rays right now, at least that is how i would feel.

i wouldn’t worry about your diet yet, either, since there doesn’t seem to be any indication that it is a problem.

my daughter had to have a fundo just before she turned 10 months old. she was on the extreme end of the reflux scale—most babies don’t need to have surgery, but it is something to keep in the back of your mind if she is aspirating, as severe aspirations problems would be a reason to do a fundo. you are still pretty early in the reflux game with this one, so there are still things to try—-such as making sure she has a high enough dose of medication.

i know they talk about keeping them upright after feeding, but my daughter refluxed more when she was upright than when she was lying down. she had a hiatal hernia, so her condition was complicated by that.

you baby can’t choke on milk, because it can’t block their airway, it sounds more like she is aspirating, but you have probably already figured that out.

i think having your mom take the baby for a little while was a smart idea on your part. if she is willing to do that, it is probably a good idea to have her take the baby periodically for you so that you can stay sane until you get this all worked out.

don’t know if i helped much, but good luck and ask all the questions that you need to—we’ll do our best to answer!

[Anonymous]

Thank you so much for your reply. I took her back to the GI dr today and we are getting an ultrasound done of her stomach tomorrow to make sure there isn’t something else that is wrong.

She does not want to do another set of xrays because she said she really doesn’t think she is aspirating because her lungs are clear and she is not coughing a lot.

I am unsure that I trust her judgement. I think I am going to try to get a second opinion because she is saying we just have to wait for her to outgrow this. ALmost like she is blowing the choking issue off.

[Anonymous]

I have a little more time to expand on the replies I have received….again thank you all!

QUICK QUESTION! They have now put her on something like Reglan that starts with a B….this rx is in my purse. Does anyone advise this? She said it doesn’t have the side affects of Reglan.

Laura, thank you so much for all your resources! I have used a lot of them from other posts as well. I had not heard of Carafate before and looked it up tonight. It appears to be for a hernia? What should I say is my reason for wanting it to my doctor? How will it help?

Also, as for her poops, they are normal so far. They are runny but otherwise no indication of MSPA, but I had read on here that sometimes the only symptom can be the reflux so I thought I would try the diet. She actually has a rash too that I thought was from the spit up getting on her skin and from sweating, but last night I took a Benadryl for my allergies and her skin has cleared up a lot….BUT I also have been without milk for a day…so, I do not know what to think of this yet.

She also does not have smelly gas or painful gas most of the time, but today she seemed to be trying to poop all day only to get a little out…BUT I threw another curve ball in there by giving her a bottle of the hypoallergenic formula yesterday in desperation when I could not feed her at the store.

As for the Prevacid…she is on Prilosec right now at 1ml twice a day. It is red so I think it was made with the Mylanta. I am going to check with the pharmacy tomorrow to see. What I have read on the Caracream appears to work like the Mylanta as a buffer…..is that right? Would it do anything other than that?

Since the medicine was made in the pharmacy with the Mylanta does that mean it won’t work after two weeks?

Bensmama, yes, I was doing the one breast time blocks due to the LC thinking I had OAL. But I do not leak and I do not even spray unless I am pumping. I have heard that most people leak when their baby cries or when they are feeding from the other side…I don’t. So, I do not know if I have OAL. Plus, when I was pumping I could only get 1 to 1 and a half ounces out of each side at any given time. I actually think my supply was short for a week due to not eating enough….I was really stressed out and lost a lot of weight.

Kevieb, What was your daughter going through that they needed to do the fundo? How did you know she was aspirating? Do you agree that if she is not coughing a lot (she does very sparatically) that she is not aspirating?

As for my mom helping, I am living with her while my husband is deploying and she helps a lot for little things like for me to go to the bathroom, to shower, to cook or to clean….she is older and her patience is thin between the baby and my ADHD 7 year old and I see her getting really stressed out too. So, I don’t like to ask for any big blocks of time for help. My dad is all freaked out about her choking and loves to help but panics with every sound or face she makes.

Thank you again for all taking the time to reply! I feel like this website is a Godsend! I just hate that so many babies and their families are having to go through this! I always wonder why we got the short end of the stick? Why couldn’t our babies just be happy little sleepiers, poopers and eaters like most babies?

[hellbennt]

excuse the wonky post- am flying out the door

I am out the door- I hope others answer sooner bcse I’m out all day:
read Prevacid 101 I hope it clears some things up for you- als ogo to the Medicine Forum and read the top posts (they are ‘stickied’ meaning they always remain at the top- usually newer posts are at the top, but when they are ‘important’ ie: read/used a lot we make them a ‘sticky’ so they’re always where you can find them)

I’m not sure you should ‘mess’ w/ your diet just yet, but i TOTALLY understand that you are desperate and looking for answers- I did the diet and i pretty much had the feeling that it was NOT my diet- but I did it anyway and actually I was glad I did it…I found there were some things I ate that affected my baby…but anyway my point is I would concentrate on meds right now. I know I sound like a drug pusher, sorry!!
give zantac at the highest dose for weight, give spaced 4hrs from the PPI- the PPI most likely isn’t any good and to be honest it might be the RED DYE that is not good for your baby- well, that & it’s most likely NOT a made right and NOT a high enough dose…I would email dr philips and have him contact your dr he will do that for you

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Dr.
Philips: phillipsjo@health.missouri.edu

Office Phone: (573) 884-0672

stockd@missouri.edu is the contact person for Buffer
Babies

573-884-0672

also read this about formula- personally I wouldn’t go down that road (at least not yet)

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Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

hellbennt2009-12-28 10:02:36

[Anonymous]

Laura, thank you so much for the great advice, but honestly reading all the threads you posted on here has left me confused. Should I switch to Prevacid? Because from what I am reading, for her age, the best thing is the Prilosec, which she is on. I am going to call the pharmacy tomorrow to find out how they compound it and how much she is on,because I cannot tell from the bottle.

I can tell that you are right though that it loses it’s effectiveness after two weeks if they pharmacy compounds it because she is getting really fussy again.

I tried the TED a few times, but never make it a whole day. I feel like such a horrible, horrible, mom! But I live with my parents and they eat crap all day long and it is just so hard to avoid everything! However, there were four days that she did not throw up at all and only minimal manageable choking (not the head thrusting, not breathing choking)…but I have NO idea what gave me those blessed four days! I ate everything and even had her on formula. I have been giving her Nutramagin formula to allow my mother in law to babysit her so I can go back to work, but she only gets one to two bottles a day. She doesn’t seem any better or worse while on it.

I tried just formula for a day and she seemed to choke worse but didn’t throw up….confused me, but I would rather she choke on breastmilk than formula so I did not switch her.

Anyways, thank you again for all your information I am just confused on the prevacid versus prilosec posts you flagged.

[hellbennt]

try prilosec if you want- that’s what ‘they’ usually start with and then, if need be, it gets switched to prevacid. that’s what happened w/ my baby…he was on the highest dose by weight for prilosec and it didn’t help much (it did help some) so then we switched to prevacid (with what was then called caracream, which is now called Bufferbabies)

personally I would not deal w/ the pharmacy. I would TELL dr to either rx:
1) Zegerid (this is a prescription packet of powder that contains omerperzole- whatever the generic of prilosec is- and once you mix it, according to Dr Philip’s instructions-not the drs or pharmacists- always check w/ marci-kids as they created it in the first place, it becomes a stable liquid and can be given at any time with our without food/breastmilk/formula)
2) ask for a plain ‘ole prescription for prilosec and then, on your own, buy Bufferbabies and mix the prilosec w/ the Bufferbabies and then voila! you have your own stable compound (liquid form of medicine) Bufferbabies can be used w/ either prilosec or prevacid and also can be given at any time.

From what I have read here, though, is that prilosec in general (& w/ Bufferbabies) tastes nasty…however, zegerid seems to go down fine!

also: the prevacid 101 post actually has information about all the PPIs as well as a link to zantac info. it started off as ‘just’ prevacid info but then I added to it…

my guess is that your prilosec dose is very low.
if you have any zantac left I would give that, too, at the highest dose for weight, and you mentioned that your lo wouldn’t take it, well you can mix it w/ mylanta to help it go down better-
try mylanta cherry
supreme or any store brand equivalent, looking at the ingredients to see that
you choose the one w/o any aluminum. it’s the adult kind and safe for
even newborns. give 1ml and see what happens. you can give up to 5mls over the
course of the day & if you see loose stools, just back off some.

if you DO give zantac and mylanta, make sure you space if four (4) hrs from the prilosec. the zantac CAN be given with the mylanta, but NEITHER the zantac nor the mylanta can be given w/ a PPI

hellbennt2009-12-28 10:24:39

[Author]

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