Please help with next steps - breastfeeding at major risk - Page 10

[chlobo]

Originally Posted by DeChRi

I've notcied a decrease in E's appetite...not wanting to eat during the night @ all..never eating more than an oz or two @ a time.

I took my oldest in for a strep test this morning & on the way out did a weight check on baby E. Same scale we always use. Fully clothed and wet diaper and she was still 2oz lighter than she was a week ago. I've never ever had a kid lose weight. My other two were 95th percentilers for years.

At what point do I worry about this?

Weight loss just might be enough to get you fast tracked into the GI. Might want to ask your ped about it? They take FTT very seriously.

[eclipse]

Originally Posted by chlobo

Weight loss just might be enough to get you fast tracked into the GI. Might want to ask your ped about it? They take FTT very seriously.

Yep. I'd see if you can get your ped to do an "official" weight check for you and then call the GI and ask for you to be bumped up because she is losing weight. I'd rather she not be losing weight, but it might be a "good" thing if helps you get answers faster.

[DeChRi]

I called her & we're going in Monday to check in and check weight. I agree that if she's losing we can fast track her in. I know 2oz isn't huge loss, and she was, at one point, 98th percentile. So she hardly looks malnourished. However, her last well baby she'd moved from 98% to 66%, so to lose a bit now worries me a bit. Not freak out worry, but more "something's not right" worry.

[farmerjess]

mama, I hope you figure everything out soon.

[ktgrok]

Can you take her in sooner o be weighed? Waiting almost a week, then calling the GI doctor, then waiting for that appt, then waiting for whtever tests they schedule....I'd think you should start that process now.

[DeChRi]

Originally Posted by ktgrok

Can you take her in sooner o be weighed? Waiting almost a week, then calling the GI doctor, then waiting for that appt, then waiting for whtever tests they schedule....I'd think you should start that process now.

I can take her in anytime, however, the GI folks don't see a 2oz loss in a week as a red flag. If she loses, or even stays the same, over the next week they "will discuss with the Dr and see if it warrants an earlier appt". Freaking. Frustrating. It is like the ER...wait until she turns blue.

She started the Neocate on Sept 8. One week down tomorrow and she is not much better. 5 days on 30mg Prevacid (after only being off of that and on the Zantac for 3.5 days) and notta. She screamed for hours tonight. She won't eat more than an oz or two at most at a time. I did syringe feed her when she was really worked up this evening and she gulped an oz down. She was pretty unhappy/crying all day long, with a happy 45 min spurt outside on a blanket, then raging screaming for hours after. It's so odd...she was completely not refluxy today. I had her upright and attached to me all day and I could barely feel any refluxing, which I usually can really feel. She spit a few times but none that bothered her at all.

I really thought the Neocate, after a week, would give some relief, if nothing else. I am giving it more time, but just a little discouraged. Really starting to feel like I am just chasing a ghost. I know the GI appt is key, but part of me feels like at some point of nothing making sense or helping, I just throw everything out the window, no meds, no formulas, no diets, just nurse like hell for a week and go back to square one....assess latch, suck, swallow, blah blah blah.....but everytime I go back to nursing, by about hour 36 I am telling my husband....remind me how bad it is Right Now, next time I want to try this.

So furstrated and keep thinking it just has to pass.

[mamafish9]

Oh man.... screaming babies are soooo hard. Has she ever been in a good place while on the prevacid? If you haven't seen any improvement after 5 days on neocate + prevacid, I'd change something. Drop the prevacid, or try a formula alternative. Prevacid's easier, so if she's never had a good stretch on prevacid, I'd take that out first and see what happens.

It could be she doesn't tolerate the neocate. Docs tend to think of it as hypoallergenic because the proteins are broken down - but intolerances can be to the non-protein parts of food as well (like the soy oil or corn syrup or safflower oil or coconut oil in the neocate - most kids in this forum react to at least one of those ingredients, some to all of them). I hope that's not the case for you, just know that it doesn't work for everyone.

The reason I encourage you to keep testing is that it's unlikely the Ped GI will be able to move instantly to fix things either - it will likely involve more testing, waiting, etc. So to keep your sanity, it might help to be changing one thing at a time, every 5-6 days if nothing is getting better.

[eclipse]

You said she's showing a two oz loss clothed and with a full diaper, though. Depending upon what she was wearing and how full the diaper was (and how much a newborn diaper weighs and if it's cloth or disposable), you could be looking at a pretty big drop in a week. I'd probably go in in the next day or two just to get whatever drop there's been on record, even if you still have to go back on Monday for another check.

[ktgrok]

what about sitting in the GI office and refusing to leave? Let them hear her scream. Or looking into another children's hospital or nearest medical school? A baby that can't eat more than an ounce at a time and is losing weight should be something a medical school is interested in.

[DeChRi]

Originally Posted by mamafish9

Oh man.... screaming babies are soooo hard. Has she ever been in a good place while on the prevacid? If you haven't seen any improvement after 5 days on neocate + prevacid, I'd change something. Drop the prevacid, or try a formula alternative. Prevacid's easier, so if she's never had a good stretch on prevacid, I'd take that out first and see what happens.

It could be she doesn't tolerate the neocate. Docs tend to think of it as hypoallergenic because the proteins are broken down - but intolerances can be to the non-protein parts of food as well (like the soy oil or corn syrup or safflower oil or coconut oil in the neocate - most kids in this forum react to at least one of those ingredients, some to all of them). I hope that's not the case for you, just know that it doesn't work for everyone.

The reason I encourage you to keep testing is that it's unlikely the Ped GI will be able to move instantly to fix things either - it will likely involve more testing, waiting, etc. So to keep your sanity, it might help to be changing one thing at a time, every 5-6 days if nothing is getting better.

She was on Prevacid for quite awhile and we really didnt think it was doing much, so we quit. She did get worse it seemed, so we just added it back in. It takes two weeks to fully work, so at the end of two weeks, if things are still stinkin, we'll yank it.

I just am not sure, if we have not seen a GI in a week, and if she is no better, what the next step is.

I did by a faster flow bottle this evening, in hopes to try and get enough food down her. I struggle here because I dont want her to be hungry, but if she adverse to eating for some reason, I want it flagged.

[elanorh]

I'm sorry. Ina was limiting her feeds to manage her reflux -- both at breast and at bottle. The day she was hospitalized, she refused both all. day. long. (among other issues, including her breathing changing significantly, and then an 8 oz weight loss from what she'd weighed 3 days prior).

I hope that the weight issue gets you more traction with the Ped GI, and in sooner. And, I hope that the Neocate starts helping.

I think you should be prepared to talk with the Ped GI about other potential causes for this (beyond allergies/intolerances). A mitochondrial disorder would be one thing to consider. A member of my support group years ago had a daughter who was eventually diagnosed with a condition which caused her to actually feel herself digesting food (she had nerves where they shouldn't be). I sincerely hope that things are easier to diagnose and resolve than this, but I hope the Ped GI is up on all these very unusual different diagnoses.

Really, really hoping that things turn around in the next few days!

ETA
I'm sure you'll be doing this, but if you haven't thought of it, make sure you bring some detailed documentation of what you've done to the Ped GI appointment. I did a typed overview for Ina's allergist appointment - bullet points on a timeline, and then more detailed information attached behind it, and the doctor read through all of it - it saved him time, and I think it gave him a good idea of our level of dedication/knowledge - there was no patronizing at all during our conversation.

[DeChRi]

Originally Posted by eclipse

You said she's showing a two oz loss clothed and with a full diaper, though. Depending upon what she was wearing and how full the diaper was (and how much a newborn diaper weighs and if it's cloth or disposable), you could be looking at a pretty big drop in a week. I'd probably go in in the next day or two just to get whatever drop there's been on record, even if you still have to go back on Monday for another check.

Yup, agreed. Dr said to pop in anytime I want in the next few days, grab a nurse and weigh her and they'll chart it. I keep trying to eek food down her, but wonder if for the next week I let her intuitively eat and see what her weight does.

[DeChRi]

Originally Posted by elanorh

I'm sorry. Ina was limiting her feeds to manage her reflux -- both at breast and at bottle. The day she was hospitalized, she refused both all. day. long. (among other issues, including her breathing changing significantly, and then an 8 oz weight loss from what she'd weighed 3 days prior).

I hope that the weight issue gets you more traction with the Ped GI, and in sooner. And, I hope that the Neocate starts helping.

I think you should be prepared to talk with the Ped GI about other potential causes for this (beyond allergies/intolerances). A mitochondrial disorder would be one thing to consider. A member of my support group years ago had a daughter who was eventually diagnosed with a condition which caused her to actually feel herself digesting food (she had nerves where they shouldn't be). I sincerely hope that things are easier to diagnose and resolve than this, but I hope the Ped GI is up on all these very unusual different diagnoses.

Really, really hoping that things turn around in the next few days!

What ended up being the full picture with Ina?

The Ped GI practice here is extremely well respected, thus the reason it is SO hard to get in to. Patients come from many surrounding states as this practice has Gi Docs that specialize in many, many things. But it's so frustrating to get in to. We have a big university hospital here but no Ped GI.

My aunt did track down a GI doc in about an hour from here that does identify as "works with peds". I'm hopeful with the documented weight loss and the 2nd Dr in NE that followed me through allergy stuff making call there, that we can get in soon.

[DeChRi]

And, I have the stomach flu. Baby slept amazingly...woke 1x all night, and I was up sick on the bathroom floor!! Come on now, lol.

Anyway, as I laid on the tile floor I had a thought. From the time E was born she never would nurse more than 5 min or so, which we attributed to massive letdown and such. Her first month she was so sleepy and stuff that I just mini-mealed her and around 4 wks the slide started. Of course I have no idea how much she gets while nursing, but I always was working to get her to nurse longer sessions to get more hindmilk since LLL leader here first thought it was a fore/hind imbalance. None of the times she's taken the bottle, has she sat and drank 3+4oz..always just an oz or two. But I bottle fed like I nursed and just kept popping the bottle in to get is down her and bit as a time. When she gets a lot of food she gets more upset.

I'm suddenly wondering about a stomach emptying kind of thing. She ate 1.5oz @ 8:45pm & fell asleep. 11pm I woke her & she ate an ounce. 2:30pm, just over an ounce, 6:15am, one ounce and sounded so full it was sloshin in her throat. And now @ 7am I'm working on another oz. Writing that out I see how wonky it looks.

[DeChRi]

And each of those feedings took ten min or more.

[AquariusHome]

Although she is still screaming, you say she has not been refluxing over the past day or 2 right? So that is improvement I would say. What about the congestion? That could be either a result of the reflux or a stand alone symptom. She might be screaming because she is starving but not willing to put up with the pain from her torn up esophagus. Or she might be less refluxy because she isn't eating enough to come back up and there really is no improvement on Neocate. The fact that she got worse on zantac tells me the prevacid is doing something even if it also contains ingredients she is reacting to. A problem for sure.

I hate to say this, but I agree with Elanoh that you should prepare yourself for other possibilities that are less easy to fix, and also prepare yourself for a hospitalization. It is not good for your poor baby to be loosing weight like this. The GI dept is probably not aware of everything you have already tried, which are basically the easy fixes.

As for what your options are while waiting here is what comes to mind:
1. You could try another TED, this time cutting everything that you have left in in the past - all supplements, checking with manufacturers of all your foods to ensure no hidden ingredients (I'm most suspicious of corn), and eliminating the prevacid. If you can keep up the calories to be sure you aren't dumping toxins and reduce your weight lifting during this time you can hit a bunch of factors at once and be able to narrow down the possibilities quickly this way, provided your technique is flawless. But eliminating the prevacid in a baby who is already refusing food is risky - she might refuse to eat even though the food is not going to cause a reaction just because she is still so raw.

2. You could try Elecare - if its a true IgE allergy to anything this ought to take care of it. Elecare will also help her if the problem is one with digestion unrelated to food allergies or intolerances. You could leave in the prevacid to test the digestion theory or eliminate it to further explore food intolerances but there is still soy, corn, and safflower oil so if she's very sensitive to one of these things she will still react (something most doctors will not agree with but the moms on this forum can attest to). Elecare requires a doctors order I believe.

3. You could try a homemade formula. This way you could be sure to eliminate corn, since that is the one thing (from my memory) that has never been eliminated. But if she reacts to cow's milk too, which given the degree of sensitivity she's showing I would say is likely this won't help and will probably make things worse.

In any case I think the key at this point is to get her eating. I agree that you may want to wait before making another move to allow the prevacid a full chance to be effective. If after 2 weeks on prevacid she is no better then I would be prepared to make another change which may mean starting a TED soon in anticipation. But possibly the best thing, as much as you hate to see this happen, is a hospitalization where she can get IV nutrition and allow her esophagus to heal and at the same time force some testing. Hopefully things turn around before it gets to that point.

[crunchy_mommy]

Originally Posted by DeChRi

I'm suddenly wondering about a stomach emptying kind of thing. She ate 1.5oz @ 8:45pm & fell asleep. 11pm I woke her & she ate an ounce. 2:30pm, just over an ounce, 6:15am, one ounce and sounded so full it was sloshin in her throat. And now @ 7am I'm working on another oz. Writing that out I see how wonky it looks.

You could be onto something there... Perhaps that would also explain why she's generally better at night (if she's not eating as frequently during the night, everything has more time to move through her system?)

Any chance your pediatrician could refer you for a couple of specific tests while you're waiting to get in to the ped GI? Could she at least send your baby for an upper GI or something? (I know usually they like the specialists to make that call but maybe they'd make an exception??) I don't know, I just don't think waiting a week for her weight to drop, and then waiting another week or two to get in to the ped GI, and then waiting up to a month or more to complete all the tests & have a follow up appt, is the route to go. Is there another specialist who could get you in sooner in the meantime?

My DS screamed & cried for the first year of his life, and spit up 'round the clock for the first 9mos -- not the little bit of spit up after a feeding that many babies do, but MASSIVE amounts all.day.long. no matter how long it had been since his last feeding. He nursed every 20-30 minutes for that first year, and I suspect only took an ounce or two at a time, I had huge oversupply and when he got too much he got sooo miserable and spit up even more. Extreme block feeding helped but never completely eliminated his reactions. I remember exactly ONE time when he was probably about 8 months old when he was happy for 45 minutes straight. In his whole first year, that was his only 45 minutes without screaming. I never slept because I was waking up constantly to flip him over the minute I heard him starting to spit up (didn't want him to choke on it, he wouldn't flip himself when spitting for some reason). Now when you mentioned stomach emptying issues, I looked up delayed gastric emptying and it sounds very much like what he may have been experiencing. I don't know why I'm telling you all that -- I guess it's just that your DD reminded me so much of my DS all along for some reason. This brings up a lot of hard feelings for me, because everyone (dr's etc.) didn't seem to think it was a big deal and just brushed off my concerns, and we never really pushed, we were new parents and confused & thought maybe all that screaming and puking etc. WAS normal, but looking back, I don't feel that it was.

Anyway. So, long story short, do what you can to get her in there or SOMEWHERE sooner. I hate the idea of just waiting for her to turn blue or lose 3lbs or something. I can't believe no one is fast-tracking you yet. Also, didn't you say she dropped from the 95% to the 66%? Don't know if I'm remembering that correctly but if so, would another huge drop in percentiles be as good a 'red flag' as actual lbs lost?

I don't know what else to say but I hope you are able to get to the bottom of this soon & hope you yourself are feeling better!!

[AquariusHome]

An upper GI test will show how quickly the stomach is emptying. It is done the same way as a swallow study (with barium) but looks at the whole upper GI tract rather than just the mouth and throat. You could knock out 2 birds with one stone there.

I guess we posted at the same time, Crunchy Mommy.

[AquariusHome]

A couple late thoughts on the TED option:

I'm not sure how much Neocate helps with digestive issues. My understanding is that it is geared toward babies with food allergies or sensitivities. If I'm right about that and your technique with the TED is impecable, things should not get worse switching from Neocate to a strict TED. You've already tried 2 different TEDS with similar results so I would look at the common denominators and eliminate those. If she gets worse you can swap out each individual food to see the results, but I think it is more likely she is reacting to something in the common denominators rather than one of the "low allergenic" foods you tried in your TEDs. But I would not nurse her - give bottles of BM so that you can track intake and control the variables as much as possible.

[DeChRi]

I have a lot I'd like to reply to but & on phone & can't quote. (Still bathroom prone)

In further support of delayed emptying...looking over her eating/spitting habits the last day or two...she spits excessively when she eats more than a couple oz in an hour's time. Every single time.her silent relfux symptoms flare then too. Having had a severely refluxy baby, and also a moderately refluxy baby, my gut says her reflux is a symptom and not a main cause.

I'll come back and comment on all of the recent thoughts/advice.

Thanks so much for hanging in here with me.