Ugh...I just don't know what to do with him anymore. He'll eat OK in the middle of the night...in fact that's the only time he eats well...but then he's miserable because he's laying down afterwards (I do hold him upright for 30 minutes afterward...but it doesn't seem to matter). During the day he screams...so I try to feed him...he starts to eat...then keeps arching his back and kicking his legs and cries. I know he's hungry because he tries to latch back on but it's just a continuous cycle for about 5 or 10 minutes until I can't stand it anymore...and it's not doing us any good. He's not sleeping well at night AT ALL...and during the day he doesn't nap more than 20 minutes MAX. He hasn't gained weight in 5 weeks...and has lost almost a half a pound. We go to the new GI on Wednesday...but I'm just so worried about him. He needs to eat!!! Anyone have any advice or experience with this!!?

i don't have any experience in breastfeeding but unfortunately i have some in food refusal...:sad3:

you said he eats well when you sleepfeed him?
if bram sleepfeeds well then i know he is not really in pain....babies with reflux may develope food aversions due to the pain and that is ceirtainly our case....
when he is in pain he just doesn't eat, i can't even sleepfeed him, when it's really bad he doesn't even ask for food....
you've got the GI on wed and if he is having weight issues things are usually much faster (or at least it was on our case....)...
maybe he needs his prevacid upped...
did you try some maalox or mylanta?

i know that he needs to eat and how worried and frustrated you are,i've been trough that and still am on and off...
hope things get better and you'll figure out something with the GI:hug:

Well...I think he just needs new meds altogether. The Prevacid has never really helped him. I think the only reason he's held steady is because he will sleepfeed. But...once he eats at night he's miserable and won't sleep. I've tried the Mylanta...and it will help for a very short time...like long enough for him to get about a 30 minute nap in...but then he's usually screaming again. I hope we get some answers from the new GI.

Oh...and he's only in the 10th-25th percentile in weight for length...and he's normally in the 75th-90th. Meanwhile his length is above the 97th percentile.

My dd was always better at b'feeding at night--the daytime was horrific. She'd constantly look to latch, then go through much of what you described.

Okay, a couple of things that *might* help you get through until Weds. First, it's great that you're holding him upright after feeds; however, we all know that you need your rest, too, and that you can't just hold him all night. :-( Do you have a swing or bouncer chair? If so, that *might* help if you let him sleep in that. It will keep him more upright.

I'm glad you're able to give the Mylanta. I *wonder* if you could give him a little more? I am NOT a doctor and you would really need to call your ped just to make sure. I don't know how often you can give it to a little one; however, it's worth asking.

It could be that he's developing an aversion and is just too tired/hungry at night to fight too hard, it could be that he's really still in pain at night, but again--is too tired/starving to fight you...and the b'milk might be soothing to him once he's relaxed enough to take it; however, once it gets to his tummy, it exacerbates the reflux. It's a horrible catch-22. :sad5:

It is so scary when they won't eat/start losing weight. On the bright side, you have a GI appointment on Weds and hopefully s/he'll be able to help you ASAP. The down side is that it's two days away and it is so hard not to worry about this. Please let us know what happens--and vent as much as you need to! :hug:

Thanks so much for your help Mary!!! I've tried the Mylanta...but the GI we just saw told me to use it no longer than 5 days and no more than twice a day. I've been told that's TOTALLY WRONG...but I'm so confused as to what to do!!! I mean I think the GI we saw was totally off his rocker...but I'm so afraid to take a chance. How often and for how long can you give it??? What would he be worried about as far as side effects of giving it longer and/or more often??? I've been saving it for when he gets really bad during the day...and then at night right before his night-time feeding. I am DEFINITELY thankful this new GI got us in so quickly!!! We had to wait 6 weeks for the other guy and that ended up being a total bust!!! The really hard part is that he's so big. People don't look at him as a sick baby...he's the size of your average 6 month old...but he was born big (as was my DD)...so he looks like he's growing great...but when you look at it on the chart...he follows the curve until now and then he takes a nose dive....so I plotted it all out on a chart I printed off the net and I'm taking it with me on Wednesday. Oh and as far as his swing or bouncy chair...he won't touch them!!! He sleeps on an incline in my bed (poor DH has been kicked to the couch!!!) because he's outgrown his bassinet....but he chokes a lot and will ONLY sleep on his side or tummy...so I'm not comfortable with him in his crib just yet. I think if we could find some meds that work we'd be on a roll...and I'm hoping and praying that this new GI is willing to figure out what works!!!

Oh, boy--my dd was also a chubby-wubby and nobody took us seriously, either. I honestly believe we would not have the myriad of problems with feeding now if her initial ped. had listened to me. :-( Some of the other kids here look "just fine" and their moms have also had problems getting taken seriously. :-(
She went from 95%ile down to off the charts and remained off the chart for a year. It is scary to watch your child plummet like that and I don't think docs should wait until kids start losing weight to take action. *steps down off soapbox*

Okay, as for the Maalox (that's what we give our dd), I give it up to 2-3 times per day; however, there are a couple of differences. First, she's 2 years old. Second, she doesn't need it on a daily basis. She does take a PPI (Prilosec) in the morning and gets Pepcid (H2 blocker) before bed to help with breakthrough reflux. If I notice her refluxing/puking during the day, I break out the Maalox.

If he sleeps best on the incline, keep at it. He's probably most comfortable/relaxed knowing you're right there and if he's in pain, it probably helps him just a little to know that mommy's nearby. (sorry about your dh!)

I"m glad you're taking the chart in with you--and you might also want to take in some of the info here. Hang on and I'll get you the link to all the info...

:hug: No advise just lots of :hug: :hug: :hug: :hug:

Okay, click on this link, then go to "dealing with doctors".
http://www.infantrefluxdisease.com/infant_reflux_main.php

Also, check out some of the other stuff there; however, there are 2 great articles on how to deal with your doctor, as well as a great checklist to bring with you and a reflux diagnosis sheet to fill out and take along. It might help you get somewhere with your GI.

Good luck--I really hope you're able to get the help you need. If not, keep trying. It is frustrating and so tiresome; however, you will find someone to take you seriously. Even if you wind up in the ER, somebody has to listen! :hug:

Oh, boy--my dd was also a chubby-wubby and nobody took us seriously, either. I honestly believe we would not have the myriad of problems with feeding now if her initial ped. had listened to me. :-( Some of the other kids here look "just fine" and their moms have also had problems getting taken seriously. :-(
She went from 95%ile down to off the charts and remained off the chart for a year. It is scary to watch your child plummet like that and I don't think docs should wait until kids start losing weight to take action. *steps down off soapbox*

Okay, as for the Maalox (that's what we give our dd), I give it up to 2-3 times per day; however, there are a couple of differences. First, she's 2 years old. Second, she doesn't need it on a daily basis. She does take a PPI (Prilosec) in the morning and gets Pepcid (H2 blocker) before bed to help with breakthrough reflux. If I notice her refluxing/puking during the day, I break out the Maalox.

If he sleeps best on the incline, keep at it. He's probably most comfortable/relaxed knowing you're right there and if he's in pain, it probably helps him just a little to know that mommy's nearby. (sorry about your dh!)

I"m glad you're taking the chart in with you--and you might also want to take in some of the info here. Hang on and I'll get you the link to all the info...

Amen about the docs not waiting until the child is doing so poorly to do something!!!

As far as the Mylanta...it sounds like I should just stick to the 1-2 times a day then. I'm giving him half of the Prevacid solutab twice a day now too as recommended by the other GI...just to see...and so far I've seen no difference. I'm also off all dairy and soy again...although I have tried that before and it did nothing...I'm trying it again just in case...heck...I'd stand on my head and snort pixie sticks all day if I thought it might have the slimmest chance of helping him!!!

He does sleep best in the incline on his tummy...but even then we can only get 2 hours MAX out of him. He's just so miserable...and of course so am I!!! Hee hee...DH actually offered to sleep on the couch because he was here when we had the choking incident in his crib and it scared the bejeezus out of him too!!! He just doesn't trust himself to not roll on him or pull the blankies up too high or something...so right now it's our best option!!!!! We lay together and watch TV or just talk for an hour before bed...so it's all good!!!

I also printed off the impact sheet and diagnosis sheet last night and have those both ready to take with me. I had DH check to make sure I answered them all correctly. I just don't want to wait until this is so severe that there's major damage being done...KWIM??? I just can't see doing that to my child just to appease a doctor!!!

Thank you for all your help once again...this place is like a gold mine for infant reflux and I'm SO GLAD I'M HERE!!!:party0049:

Maybe it is something in your diet that is triggering it? I am not sure but I am sure you have already heard this a million times but I think any milk products and like brocolli is bad for reflux. I am not sure that is whayt I have heard.

I'm a breastfeeding mom who had the same problems with my 5 month old for weeks and weeks. He would cry like he was hungry but wouldn't take more than a few sucks before arching/screaming/thrashing and pulling off (he would eat fine in the middle of the night half asleep though). That's what led us to suspect reflux in the first place. He continued to do it on Zantac and Axid and for the first ten days or so on Prilosec. Then one day a last week, he suddenly stopped. I guess the Prilosec is finally working. Although, I've also cut out soy and dairy from my diet, so maybe it was an allergy? Based on my own experiences, it sounds like your little man's reflux is still acting up, or maybe he's developed a food allergy to something you're eating? Does he have any other allergy-type symptoms (red rash around anus, increased vomiting, blood in stools, etc...)? I hope the GI can give you some answers on Wednesday so your little guy can get back on the right track. :hug:

Thanks!!! He doesn't have a rash anywhere...but his stools are always very foul and sometimes mucousy. They're also an orange/brown color vs the mustard yellow they should be...and several times have had black specks in them...but I don't know that it's blood. I've tried the dairy free diet before and it didn't seem to help...but I only tried it for 2 weeks. I'm back on dairy free...and have eliminated soy as well...and I will try it for a bit longer this time to see if it helps at all...but it's been almost two weeks already and things are definitely still getting worse!!! I'm allergic to shellfish...so that's out...and I despise broccoli and couliflower so that's out too!!! His reflux has never been under control. I honestly think he's still got esophagitis and I can see that his cheeks still have the bluish/white film on them from the thrush...so hopefully once we get a handle on the reflux I think we'll be on our way to better eating habits...or at least I hope!!!

It's strange how similar your story is to ours!!! Roman's stools were exactly the same as your ds (though we've had some red/pink blood), and they weren't much different without dairy/soy. We've also been fighting thrush for almost 4 months, so not sure if that's related or not. In any case, I've added back in some dairy lately without trouble, but I tried supplementing with Carnation Good Start formula and his diapers got very smelly and mucousy again, and he spit up alot more, so I think he definitely has problems with dairy. Anyway, what really made the biggest difference for us was two weeks on Prilosec. I really think that with reflux under control - alot of other problems disappear. I sincerely hope that your little man gets fixed soon!!!

No real advice, just :hug: :hug:
We're lucky that ds's reflux is well controlled with Prevacid, but I remember the days when he was younger and would want to nurse all the time, but arch and scream and pull off, just like you said. Sooooo hard for everyone in the family. I hope you figure out something that works!

You know, I tried to eliminate tons of stuff from my diet and nothing affected ds, EXCEPT we finally figured out that decaf coffee was driving him through the roof. I never thought that would bother him, since it's decaf, but I guess just the acidity from the beans was horrible for him.

Just a thought--don't know if you're drinking coffee at all. HTH

Thanks!!! I actually don't drink coffee...I had a run-in with it when I was 7...and that was it for me!!! He's eating better now...and I did read somewhere that there is a developmental stage they hit at 4 months which causes breastfed babies to not eat well during the day because they're so busy pulling away and looking at things...or they stop sucking to listen to things etc. He still does the pulling away and screaming at times...but it's gotten better. He's holding steady with his weight...so hopefully soon he'll get back on track and start eating like the little piggy I KNOW he is!!!

You know, that's really true. When they're going through a big learning phase, they often can't be bothered to eat... Maybe he's working on rolling? Sitting? Etc? I know that right now my ds is really close to crawling (army crawling all over the house) and he also really interested in the whole world. I'm having a hard time feeding him if we're anywhere other than at home...even then, he eats best if I take him back in the bedroom. He's also having a hard time realizing that he needs to sleep and can't practice crawling all the time!

Is it getting any better the last couple of days?

You know, that's really true. When they're going through a big learning phase, they often can't be bothered to eat... Maybe he's working on rolling? Sitting? Etc? I know that right now my ds is really close to crawling (army crawling all over the house) and he also really interested in the whole world. I'm having a hard time feeding him if we're anywhere other than at home...even then, he eats best if I take him back in the bedroom. He's also having a hard time realizing that he needs to sleep and can't practice crawling all the time!

Is it getting any better the last couple of days?

Yep...that's pretty much what I had read. I've tried feeding him in his room (we put dark curtains in there). He does eat a little better...but I can tell when it's actually that he's in pain cause he pulls away and screams vs. just pulling away to look. Thankfully that only accounts for about half of his pulling away...so I know he's getting more than before!!! He's not gaining weight right now...but he's not losing either. Honestly I think he gets most of what he needs at night!!! I just wish I could get him all figured out. I know I was TOTALLY spoiled by my DD...she was the calmest baby in the world!!! Slept through the night at 4 weeks. I don't expect that from David...but I would love to just see things improve steadily...instead of getting better...then going back again. It's SOOOO FRUSTRATING!!! That's so cute that you're little man thinks it's time to practice crawling ALL the time!!! Well...it's cute until you're trying to get some sleep!!!

My son is on Prilosec. His doc said that she found out recently that thier is milk protien in Prevacid. So maybe the med should be changed. I am diary free and he is much happier and eats so much better.

My son is on Prilosec. His doc said that she found out recently that thier is milk protien in Prevacid. So maybe the med should be changed. I am diary free and he is much happier and eats so much better.

OMG SERIOUSLY???? Well that totally defeats the purpose of me being on the dairy/soy free diet if there's milk protein in the Prevacid!!!? Ugh...I'll have to check that out!!!

I don't know if anyone has mentioned this since I have not totally combed through all the replies, but I can tell you that my boy did just that -- the nursing screaming horror - until I got all the dairy and soy out of my diet. It took about 3 weeks from my eliminations to see results - and I was really careful and eliminated pretty much all suspect dairy/soy or related foods. But, after 3 weeks he started to nurse without the screaming while still hungy problem. I so feel your pain for this. It was just terrible while my guy was doing this. Anyways, my ped. had told me soy/dairy was not a problem since there was not blood in his stools. But, I was so at wits end I just went ahead with the eliminatin and it worked!!! (With all the right meds. in place too of course.) Now, if I make any type of mistake with my diet, any little bit of soy or dairy at all, my guy will go right back to the screaming fussing horrible nursing so I know that it really is my diet that causes this since it's not like I have forgotten his meds. on those days. (I have only slipped once, and it took about 3 days for my guy to be back to ok.) Good luck! Stephanie