Advice for a confused mom

[Anonymous]

My daughter is 3 months old and we’ve been dealing with reflux since about 6 weeks. The opinion of her pediatric GI specialist, who we have seen twice now, is that she has a milk/soy protein allergy as well as reflux. Trace amounts of blood were found in one stool sample. We had a lot of problems initially with gas and although she is still a gassy baby, it doesn’t seem to cause her as much pain for the most part. Currently she is on Alimentum formula and Axid (1.2 ml two times per day). A few things have me confused lately and I was hoping for some input.

First, she has started to spit up quite a bit more. She was more of a silent refluxer initially but now she spits up several times with every bottle (and it seems like a lot to me at times) as well as between bottles. Sometimes it seems more mucousy than anything else. She is often fussy at feeding times but doesn’t seem too terribly distressed when she spits up between bottles. Within the last several weeks, she has started to sleep from 12-6 every night/morning and has even begun taking one long nap (2-3 hours) and one or two shorter naps during the day for her sitter (a HUGE improvement). I’m confused by this because if the reflux was really bothering her a lot, wouldn’t she still be restless and uncomfortable like she was in the past, and yet why is she spitting so much?

Also, about two weeks ago she seemed to develop a cold. She was really congested and her nose was running, and at about the same time seemed to be gagging on her bottles a bit more. I wasn’t honestly sure if she had a cold or if the reflux was flaring, but she had been on the same Axid dose for a month so I requested an increase to be on the safe side and gave her Tylenol for a few days to help her over her cold. She seems to feel fine but still has some coughing at night and wakes up slightly congested and stuffy some mornings. Can this be a result of the reflux? I am just getting over a cold myself so I felt fairly certain that she had one as well but can’t really be sure. I guess I’m also not sure if this is something to mention when I see the GI doc or if it’s just a coincidence. Around the same time, she also started to eat less, going from about 26-30 oz. of formula a day to as little as 18 or 19. I chalked that up to her not feeling well from the cold and continued to monitor it, and we’re getting back up to about 22-23 oz. now. I recently changed her to a Level 2 nipple and it seems to help her eat a little better as she was taking forever to eat and seemed to lose interest half way through. This morning when I fed her she was fussy and my husband suggested that she was still hungry so I offered her more and she did take about another 1.5 oz and then settled. I wonder sometimes if I am so concerned about the pain of reflux or other issues that I miss the obvious signs of something simple, like she’s just still hungry. I worry about over feeding her at one feeding though because of the excessive spitting.

So, I guess my questions are these: Does anything I’ve said seem to indicate that she needs a stronger medication like a PPI? Is it common for babies with reflux to begin spitting up a lot more? Also, do you think she could be helped by adding a small amount of cereal to her bottles? I know that practice gets mixed results but I’m wondering if a tiny amount would help keep the liquid down and also help her to feel fuller without loading her belly up on more liquid, which she can’t seem to keep down. I’ve done research and I know that I’d have to use selective cereals given her allergy.

We see her GI specialist on Tuesday and I’m hoping to get your advice on what to ask/request of him. He’s fairly conservative in his medication dosing and will not prescribe a PPI without a formal scope. I’m hesitant to do a scope on my daughter at this point since she seems to be gaining weight and growing well in spite of some of her challenges. I do believe that Axid gives her relief because I can notice a difference when she is outgrowing her dosage or if I am late in giving her a dose for some reason, but as I’ve said, I’m just often confused and overwhelmed by the different behaviors and symptoms she exhibits. I worry and think (or “over think” as my husband says) so much about the reflux and gas issues that I end up just confusing myself more!! Thanks so much for your input – this site has been a great resource for me!

JulyMom2008-10-24 13:16:55

[Anonymous]

Also, about two
weeks ago she seemed to develop a cold. She was really congested and
her nose was running, and at about the same time seemed to be gagging
on her bottles a bit more. I wasn’t honestly sure if she had a cold or
if the reflux was flaring, but she had been on the same Axid dose for a
month so I requested an increase to be on the safe side and gave her
Tylenol for a few days to help her over her cold. She seems to feel
fine but still has some coughing at night and wakes up slightly
congested and stuffy some mornings. Can this be a result of the reflux?
I am just getting over a cold myself so I felt fairly certain that she
had one as well but can’t really be sure. I guess I’m also not sure if
this is something to mention when I see the GI doc or if it’s just a
coincidence.

Emphatically yes. Refluxers can aspirate stomach contents and symptoms of this are congestion and wheezing.

Has your GI spoken to you about thickening feeds? You might want to check out Simply Thick, it’s worked wonders for Janna.

Axid is an H2 receptor antagonist. Check out:

http://www.reflux.org/reflux/webdoc01.nsf/(vwWebPage)/Vascillate.htm?OpenDocument

and scan to “medicines stop working”.

While you’re there spend some time on the Pager site. There are quite a few interesting articles there that may help.

I would say it’s time for a PPI. Check out the marci-kids.com site for more information about various PPIs and dosing. If you’re in Canada beware of Losec (Omeprazole) suspensions. They more often than not, do not work.

Jsquared2008-10-24 13:32:53

[hellbennt]

hi & welcome!

I have a LOT to say & (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

so glad you found us!

~laura

[Anonymous]

I can comment on the increased spit-ups… for us they started increasing around 3 months and have continued to do so…(we’re at 5 months)
oh–and finn has always been congested. I’ve never seen mucous in his spit-ups though…
Finn’s mom2008-10-25 01:46:59

[Anonymous]

Our Ped GI keeps telling us that it’s normal for babies to spit up-it’s when it pains them or makes it difficult for them to function that it becomes a problem.

We love our PPI (Prevacid)-it really gave us a new baby once we kicked the Zantac. Much like Jennifer, we thicken our feed with Simply Thick-we do it because our DD struggles with silent aspiration. Basically that means that liquid goes into her lungs without her coughing it up. Untreated, it can lead to respiratory arrest-and no one wants that. However, it is very treatable-at least for us. You too could thicken with Simply Thick to see if it helps. However, if the Simply Thick is outside of your budget, you can thicken with a little bit of rice cereal. It’s not ideal because in addition to causing constipation, it can make it a little more difficult for your DD to get it out of her throat if she refluxes it up-but I guess it’s the damned if you do/damned if you don’t kind of choice. I wonder if you are having the same issue as us-gagging, choking while feeding? Think about feeding her while she is sitting straight up in your arms, and ask your dr about doing a modified barium swallow study. We also struggle with just about constant congestion. We initially thought it was b/c of the reflux or her silent aspiration. For us, it’s regular old allergies-a cross that just about all people living in North Texas get to bear. I think I’ve read somewhere though that reflux babies are more prone to both congestion and ear infections anyway-so it’s par for the course-and the course does get easier-I promise. Also, a couple of us on here are thickening our EBM or formula-feel free to ask if you want more info, or if I get unlazy, I’ll find one of the threads for you. I’m not all fancified like Laura-I can’t pull any thread out of thin air like she can-she’s superposter.

Good luck and come back often-you are not alone. These wonderful, wonderful women helped me find the right Dr, meds, and combination of all for our DD-we are super happy now as a result! It will get better!!!

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