CMA or MSPI AND Reflux??? HELP!

[Anonymous]

I have a 2 week old daughter who has been showing signs and symptoms of reflux. I have had issues with her from the second she was delivered. Some of her symptoms include, constant crying, she would wake up from a dead sleep and just cry. I was breast feeding at the time, and she would also cry in the process of nursing. I contributed this to being frustrated with working so hard for no reward(food). I then began supplementing with Similac Advance Care. Some other symptoms she had and still has that started right after delivery is coughing and choking. I was told this was normal as my labor and delivery took less than 30 minutes, and she was not able to clear her lungs effectively while in the birth canal. I of course *bought it*. We brought Kora home after just 24 hrs in the hospital(Christmas Eve).

The night we brought her home she had 2 of these choking episodes, where she would spit up slimy stuff so hard she couldnt catch her breath. This still continues. She then developed green crusty eye discharge, my doc claims it to be a clogged tear duct but prescribed the same eye ointment they use after delivery, which has helped. But when the meds are stopped after a week of 2x a day treatment, the discharge returns.

I decided to quit breast feeding and try her on Enfamil Prosobee(soy) to see if it was a CMA. The constant crying/fussiness continued, the spit up continued, and the choking continued. I had discussed these symptoms with my doctor and he told me to try a thickened formula instead, so we went with Enfamil AR. The spit up decreased, no more choking episodes, but she got constipated and the bowel movements she did have was very runny, and she was still fussy and seemed to cry for no reason. I then decided to try Enfamil Nutramigen, and her bowel movements returned to normal, and she had less gas, but the spit up was worse, and the choking was as well, she would projectile throw up so bad it came out of her mouth and nose, and she would stop breathing. I then switched her right back to Enfamil AR, Now…she has the runs, less spit up, no choking, but still cries and is still fussy all the time.

We use a pacifier and she is hellbent that it stays in her mouth, and will scream bloody murder if it falls out, and its very tiring to be getting up every 5 minutes to put it back in her mouth. She will also start crying with the pacifier in her mouth. The crying episodes have been random, it started to only be in the late evenings and at night, but now it is during the day, and she seems calm by night fall. She has from birth slept through the night, 6-8 hrs without waking for a feeding, her weight has not been disrupted by the spitting up or sleeping through night time feedings, so we have just let her sleep.

We have tried everything to comfort her. We have her in a bassinet with a wedge, so she is elevated at all times. She is not burped, swaddled or moved very much for the first 30-60 minutes after a feeding, to reduce spit up. But she continues to be very uncomfortable. We have her on Enfamil AR but use the nutramigen every 3rd feeding to see if it helps with constipation. Enfamil AR is a milk based formula, so I am curious if she may have a CMA and reflux?

We also noticed she gets diaper rash faster and its worse with the AR, than it was with the nutramigen. She has an upper GI this Thursday but I am wondering if I should ask her doctor to make us an appointment with a ped allergist as well? I plan on using Marci Kids guidelines for dosage no matter what medication he prescribes for the reflux.

Now, I was also wondering if I should attempt the Nutramigen formula again, but thickened with either cereal(dont want to do) or some other thickening agent, to see if it helps with the possible CMA symptoms and the reflux, to rule out CMA. I don’t feel her reflux is CMA related, as she still had reflux symptoms on the Nutramigen. She also has some symptoms of Sandifers with the arching of her back, but the head wobbling at her age is also normal…so thats a toughie to figure out if it’s sandifer related or just newborn related.

I am also wondering if it could be MSPI? As she had the same issues and symptoms on the soy formula? I would like to keep her on something thick to keep her from having her choking episodes, it scares the hell out of me to watch my baby choke on her own spit up and quit breathing, I barely sleep even though she sleeps all night, because I’m scared she will choke while I am sleeping and I cant get to her and the unthinkable happens, so a thickened formula is a must..or something to lessen the spit up and choking. BUT no one makes a hypoallergenic formula thats thickened for babies with MSPI and reflux, and I know the PPI’s only help with the pain. So its damned if I do and damned if I don’t.

I just want my baby to feel better, stop crying so much lol and just be happy. It breaks my heart to just let her cry, but nothing I do consoles her. I am also in the process of finding Mylanta or a generic version without the aluminum. I’m at a loss at what to do for her. How would I thicken the Nutramigen without rice cereal? I use Dr. Browns bottles, oh, and she eats between 2-3oz per feeding. She LOVES the taste of the AR and will eat the whole 3oz but doesnt seem to care for the nutramigen so she usually only eats 2oz of it.

So, thats about everything. If anyone needs any more info to offer better advice, feel free to ask.

Her birth weight was 7lbs 14oz and she was 8lbs 1.2oz by last Thursday(exactly 2 weeks).

[Anonymous]

Congrats on your new baby! I’m just a newer mom like you so I don’t have much advise but I’m sure you’ll get some good info soon from an ‘expert’. : )

I can totally relate to how it feels so awful to see them in pain and you just want them to be happy and do what normal babies do!

Lastly, I can relate to the colic. My son cried for 12-16 hours a day. It was the absolute most challenging thing I’ve ever been though. Hang in there!

It sounds like she has been on a lot of formulas. We switched my sons formulas a lot and what I’ve found is that if it’s a really bad one, we know right away as he has constant crying episodes and extreme reaction. This happened with soy and with goat’s milk. He too did NOT like the taste of Nutramagen (it seems very fine and wattery) and his refulx was worse on that. When we found other formulas, he liked the taste but after a few weeks he would start doing poorly on them so I think that is what the moderator (Hellbent) was referring to as the Honeymoon period as sometimes it takes awhile for symptoms to surface. Also, your baby may just be trying to adjust to a formula period and that could be causing some of the stool problems? We tried Alimentum when my son was about 6 weeks old and he did better with that than Nutramagen. That has no soy and does not has Lactose but contains Casein which is a broken down version of Lactose to my understanding. Maybe try that for a couple weeks or just stick to what you are on now for a couple weeks and allow your baby to adjust?

Does your dr know she chokes after eating? Do her lips turn blue or is it a gagine episode? My son did that too and the dr. said they can also have a suck and swallow coordination problem.??

That’s all I can think of for now. I hope you get relief soon.

[Anonymous]

ngarcia- Thank you! I havent had her on one specific formula for that long honestly. The first time we used the Soy she was on it for almost 2 weeks with no change. The AR was used for 3 days, but only seen improvement with the spit up/choking episodes. The nutramigen she was on for almost a week, until 2 days ago when she had a really bad choking episode where it came out of her nose and she projectile vomited the whole bottle, and she quit breathing. She has had episodes where her lips have turned greyish blue from not being able to breath.

After the last episode 2 days ago on nutramigen I switched back to AR with every 3rd bottle being nutramigen to see if it helps with constipation…but she just had a bowel movement that was pretty clumpy. Her bowel movement color has gone from a yellow seedy looking consistency to a greenish color, more like a grass green coloration.

Her doctor does know about the choking episodes, and the coughing and the crusty eyes lol. I have been up his rear end since she was born, contacting him and making appointments every week since her delivery.

Now my question about Alimentum compared to nutramigen, is that the ingredients are almost exactly the same. Nutramigen has no soy or lactose in it and 17% of casien, but Alimentum has 17.5% casien, and casien is stilla milk protein, so she could be having an allergic/intolerance issue to soy, lactose and casien?

I’m wanting to try Elecare or Neocate, but I can’t really take out a second mortgage on my house just to buy it lol, that and I would have to order it online, as I live in the back woods of Iowa and no one carries specialty formula’s around the state.

I do know she doesn’t have an issue with the coordination of suck and swallow. She doesnt choke while eating, its only when she projectile vomits. She does cough while she eats, and she coughs when she doesn’t eat…I have also noticed that she sneezes a lot more than I ever remember any of my other babies doing, but yet she doesnt have a cold.

Anywho, I am hoping someone with more knowledge than I can chime in and help me figure out exactly what I need to be asking my doctor to do, or what I need to do to better help my little girl. I love her with all my heart, and I can’t bear seeing her in pain anymore.

[Anonymous]

maybe you could try oatmeal to thicken the formula rather then rice….the beechnut kind has no soy….good luck!

[Anonymous]

The primary reason for mentioning Alimentum was that I found it to be slightly thicker and my son preferred the taste. Ingredients are primarily the same tho.

Just FYI Nutramagen AA is also an Amino Acid based formula such as Elecare/Neocate. I called their website and they sent me a free sample without any hassle – it’s one can.

Sorry I can’t help with the bigger issues you’re having! Good luck. : )

[Anonymous]

dee108- Thank you! After the constipation and gas pains of last night(Kora didnt fall asleep until late) we are going back on Nutramigen and we are going to try and add the beechnut oatmeal to thicken. Hopefully we won’t run into any poop issues, but will be picking up some light karo syrup just to be on the safe side.

ngarcia- I would consider Alimentum, but I just feel so bad with going from formula to formula. She has gone from Soy, to AR, to Nutramigen, back to AR and now back to the Nutramigen. I still haven’t decided if I want to try the Alimentum as it saved me once before with my 6 yr old, but caused hell in my 2 yr old lol. But then again knowing what I do now about reflux leaves me to think it wasn’t the formula but the reflux making me think he was reacting to the change.

I think I am also experiencing the same issue now too. Maybe she isn’t MSPI or CMA, but the reflux is just so bad its causing the poop issues, and once I get her on some meds, maybe then we will see a difference.

Anywho..the AR is a no go, I cant fathom making my little girl suffer from the pain of constipation/gas ontop of her reflux. That and her poop was mustard colored and seedy on the Nutramigen which is a normal color and consistency for her age.

[Anonymous]

let us know how it goes!

[Anonymous]

dee1028- Will do. We are going back to Nutramigen and adding beechnut oatmeal with mixed fruit, to thicken and hopefully the mixed fruit will help with constipation. We also got some Karo syrup, and gripe water.

But after reading stuff about possible corn syrup allergies, i’m getting paranoid lol. I doubt it is likely, as I too am lactose intolerant and 2 out of 3 of my boys were also sensitive to lactose.

I am also wondering if her reflux is just bad enough(pain wise) that no formula will show any type of tummy help until her reflux pain is managed.

Now I was wondering if anyone had a list of possible PPI’s I could use in trying to decide which med to request. I was thinking of doing Prevacid as it worked wonders for my 2yr old, but if she is sensitive to lactose, Prevacid probably wouldn’t be the best route to go. I am also requesting that she is put on Zantac along with a PPI.

I know I am rambling, I’m just speaking aloud so to say to help me come up with other possibilities. And so anyone can throw in their 2 cents on my little girls situation.

[hellbennt]

welcome! congratulations!

ok, stick to one formula for a bit?

give it two whole weeks!

also: once meds are better/right maybe choking will be better?

I’m not so sure thickening is so good for a tiny baby? I really don’t know?

as for neocate, etc, your insurance will cover it/can cover it

here is a thread (topic w/ posts) about how to get insurance to cover:
https://www.infantreflux.org/forums/topic/going-to-the-top/going

[Anonymous]

It was suggested to me with my 2 yr old when he was about the same age. I really hate to use any type of cereal for thickening, but I can’t find anything else. She did wonderful with no choking issues on the AR, but her gas and constipation was horrid. We are def. staying with Nutramigen as it seems to help with gas issues and her eye problems.

I plan on telling her ped. about us using oatmeal to thicken, he will probably chew me out, but I cannot stand to see my baby choke to where she quits breathing.

I also have no insurance as of now, so it would come out of pocket. Hopefully when we start the meds her choking and gagging will get better, but like we all know, the meds don’t cure the spitting up.

[Author]

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