Reflux still not under control!!

[Anonymous]

Hi, I hope someone could help me out or just give me ideas on what to do next.

My DS is 5 months old (born on 25/7/2011
full term + 5 days).

I am struggling with his weight gain and
refusing to nurse. He is exclusively breastfed. His weight history
is:

at birth: 7 pounds 7 ounces

at 1 month: 11 pounds

at 2 months: 13 pounds 14 ounces

at 4 months (this is where we noticed the problem
was affecting his weight): 14 pounds 12 ounces

at 5 months: 15 pounds 9 ounces

He has reflux which seemed to aggravate at
around 2 months old. He is on Nexium 10mg for a little more than 3 weeks now (granules in 15 ml of water, once a day in the morning). He
cries (screams), arches his back, nurses on and off during all feeds. I often
get him to sleep and nurse him while asleep 🙁 I tried pumping and giving him a
bottle but he still refuses to open his month for more than 1-2 ounces every 3
hours!! He seems hungry and routes for the breast only to nurse for 3 minutes
and that’s it. He spits-up (sometimes 2 hours after feeding), burps a lot, gets
hiccups. He will not nap for more than 45 minutes and often wakes up in a bad
mood. He wakes up every 1.5-2 hours every night all night, and nurses for
anywhere between 6 to 10 minutes. I believe he does this to make up for lost
nursing sessions during the day, but he is still not gaining weight. He nurses
for a total of around 8-9 times per day, usually from one breast only and rarely
empties it. As you can see, he dropped from the 95th percentile to less than
50th now. He is medicated and I am off dairy since before he was born (my
youngest DD has a dairy allergy) and off soy since he was 2 months old. Now I am
on my 6th day of Total Elimination Diet consisting of Turkey and Lamb, rice and
millet, zucchini and pears, sweet and white potatoes (with olive oil, sunflower oil, salt, pepper and
cinnamon).

I have seen no improvement, neither from the Nexium
nor the diet. Please help!!! What should I do??

[hellbennt]

keep w/ the diet- look to see if you can increase nexium dose- I don’t know ‘proper’ nexium dose by weight but that’s what I’d do- I’d ALSO give zantac, too, if you have any, again dosing at proper dose & giving 4 hrs from nexium

actually I hate to say it but i’d DOUBLE the nexium dose giving in a.m. & p.m. (if I were to do this I wouldn’t add in the zantac) & see if it makes a difference, i can’t tell you to do this…but if it works then tell your dr the truth or tell dr “oops- both me & my hyusband dosed baby w/o knowing it- we’re so sleep deprived- & lo! and behold it’s helping so we’re just going to continue, thank you very much”

again, I can’t tell you what to do.

research all you can

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

[Anonymous]

Thanks so much for your reply. I don’t want to up his medication, I intend to stop it all together hopefully once I get to baseline. I am sticking with the diet for now although we still have some bad days. I am on day 8, not long to go… Thanks again.

[hellbennt]

I understand. You might want to increase meds until you get to a baseline- to make baby most comfprtable- w/ poop/gas and then, once at baseline, decrease meds as gut ‘shows’ it’s healed (via poop & gas)

[Anonymous]

UGH!! Just found out that Nexium has corn ingredient!!! What the *&^%^!!! I am on a TED diet and my DS is getting corn from his medication…. What am I supposed to do now??? We are on day 10 TED and still no baseline. Eating is much better, but the green mucousy poop are still there. Do you think I should stop the medication and wait it out, or should I switch around in the TED diet’s ingredients and hope he is ok with corn?? I am so overwhelmed… opinions plz!

[Anonymous]

just my opinion, but your son’s weight was doing well, but has now crossed over two major percentile marks. i think it is time to do testing because he is no longer gaining weight adequately.

[hellbennt]

me, I wouldn’t stop any meds. the meds are for the pain and to stop the damage of the acid burn. christine is right, it might be time for an endoscopy so they can ‘see’ what’s going on in there. they’ll also take biopsies and look for eos cells and even for esophogeal thrush.

in the meantime, I’d continue w/ the TED since you’ve come this far….

also, the poop can take quite a while to ‘clear’ out. have you done any hemocult testing to see if there’s blood in the stools? how’s the gas?

Erin‘s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

More Erin: https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

Erin post: https://www.infantreflux.org/forum/forum_posts.asp?TID=13576

[Anonymous]

Thanks for your replies ladies. I have read all there is to read about Erin’s story and really it is tough to put two and two together on my own. I really need your help… Yes he has crossed the curves from the 95% to less than 50% and that made us start on medication. I haven’t done any testing though. The allergist wants to wait until he is 6 months old (in 2 weeks time). I haven’t seen a GI this time around because frankly with my YDD the GI was of no help AT ALL. She did request the barium swallow test which we did just to confirm what we already know, she was refluxing!! I knew that!! She did nothing else…
Concerning poop and gas, he still have stinky gas but not as much as he used to have. I have seen only one normal yellow pop since I started TED and that was on day 3 or 4 i think but then we were back to dark yellow/green kind of watery. I haven’t been thinking about blood in stool since I was off dairy for sooo long and I thought that was dairy allergy/intolerance only. My questions:
– Should I request more tests to be done, the ones you ladies mentioned.
– If I get to 2 weeks TED and still the poop are not yellow, what should I do next, continue without adding anything or just assume that the poop will never be yellow again, and start adding food.

P.S. I think my milk supply is starting to suffer 🙁

[Anonymous]

This is just my opinion.. you can take it or leave it. I would not stop the Nexium. I would increase it. If the Nexium is bothering him, change to Zegerid Powder packs. If that doesnt work then I would consider pumping and freezing your milk and change him over to Elecare while you figure this out. I also think you need a GI. If you didnt like the one you had for you YDD I would look for a different one. Again, just my opinion.. I am not a doc.. Just what I would do in your shoes.

[Anonymous]

i’m not sure what the allergist has to do with this—since allergy testing is not particularly accurate at this young of an age—although our ped GI did do some allergy testing on sylvia at 8 months…..

a barium swallow is not meant to diagnose reflux–it is supposed to look for things like malrotation and anatomical problems–it is not necesarily going to show reflux—kind of a waste of time in my opinion–unless they suspect an anatomical problem–plus, it can’t hurt anything to have it done—however, it doesn’t always show what it is supposed to show. sylvia had two of them and neither on showed her hiatal hernia—her scope didn’t show it either–and it was a good sized hernia.

i would be asking for an endoscopy and a ph probe. i had no idea how bad sylvia’s reflux actually was until we had these two tests done. plus, it made a major difference in her treatment.

sylvia ended up needing a fundo—but most babies don’t get that extreme—we have also dealt with esophageal thrush with two children—don’t let your doctor tell you it is rare!!! i have pretty bad reflux and it now loooks like i have eosinophils—i’m working on getting myself into a specialist to see what can be done.

there is plenty to be learned from having more tests done than just a barium swallow. if your ped Gi won’t do it—find a new one!

[Anonymous]

Vigilantmom: I appreciate your opinion a lot and I am more than willing to do anything to help my DS. I will discuss this with my DH and see what we can do. I am not sure we have Zegerid here but is it allergy free??

Kevieb: I have hopes in the allergist BECAUSE my GI did not help us much the first time around. Unfortunately, this is the only Ped GI in my area 🙁 I was reluctant to do any intrusive tests on him, he is still so young. A blood test is the only thing I was convincing myself of…

To update you on the TED effects: DS is eating a lot better. He is having around 11 ounces of pumped milk during the day (8AM-4PM), when he only used to have around 7. He had a yellowish (more yellow and not slimy) poopy yesterday. I am thrilled and going through with the diet, I am on day 12! In 2 weeks, he has his regular check up at the ped (6 month), if he still have a slow weight gain, then we will reassess. A GI would be necessary and probably a change of medication and formula 🙁 We will think about that when we get to it. I will keep you posted.

Thanks again, and wish us luck!

[hellbennt]

might not be allergies, might be intolerances…

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

Sheri’s allergy/intolerance explanation: https://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638

Another Sheri explanation- intolerance/allergy post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442

Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815

[Anonymous]

Thanks for the posts. I guess I should be trying to find another GI 🙁

[Anonymous]

I know this doesn’t help but your story helped me not feel so alone & not crazy. I felt like I was reading a story about my son although he is a little bit older. DOB 6/13/2011

I hope you find some answers & relief.

[Anonymous]

Just to update:
We were at the Ped yesterday and my DS is almost 17lb. I am happy that he gained some weight. I am still on the TED, added successfully avocados and chicken. I started him on rice cereal a couple of days ago as per the doctor and he is doing fine with that. I still have one issue though, I swear after every vax, he is very miserable for a couple of days and literally stops feeding!!! So, since yesterday after the visit, he barely had a couple oz of BM. He also does not nurse for long but better than from bottles. He is driving me crazy. I am at work now and on the phone with his sitter almost every 30 minutes. It has been more than 3 hours since he nurses for 2 minutes and he is still refusing the bottle. UGHH!!!! What are the possible allergens in the 6 months shots, anyone has any idea… I am soooooo sad today, and this makes me rethink everything.

Tigress: Thanks for your post, it does help a lot because I know that I am not alone . Tell me more about your son, have YOU found any answers??

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