I was right all along.

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KittyRN's picture
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I was right all along.

Hi ladies

I've been MIA for awhile. There is definitely something wrong with Simon. Not sure if you remember my posts fretting about his eating habits and reflux, etc. But now he's losing weight.

He is on strong drugs for his reflux and doesnt seem to be bothered by this (he used to grunt and strain all the time but he's stopped that) and is a pretty happy baby to be honest with you, and sleeps through the night....but is just not that interested in eating, or is bothered by eating.

I've been waking him at night to get a feed in since this seems to be the only time he eats well. I've tried bottles too but he'll drink maybe 1 ounce then pushes it out with his tongue or gags. He used to take bottles fine.

The doctor is now doing some investigations, including ruling out a UTI (which I doubt) and doing an ultrasound to look at his kidneys (he has a history of horseshoe shaped kidney) but I dont think this is the issue either.

It's just so weird. He almost seems more happy the longer it has been since his feed. But the act of eating itself does not really seem to bother him, it's almost like he's just not that hungry. He often dives for my nipple, but will just pacify, and same with the bottle, but then pushes it out as soon as he realizes he's getting fluid. He's not really thrilled with solids either, but will take a bit then refuse to open his mouth.

Sigh! This is so stressful. The doctor did some bloodwork and he is very borderline dehydrated, so only slight, so he's taking enough in to remain hydrated but is losing weight now. He's still a big boy, so it's frusterating that things are moving so slow since "he has alot to spare". Babies are suppose to enjoy eating. Sad

See, mother's instinct is RIGHT all along!

Thanks for letting me vent.

rubber_da_glove's picture
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:bighug:

How strange. I hope they find out what's wrong with him and it's nothing serious

alwayssmile's picture
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:grouphug:

KUP. I'm really interested to know what's going on. It is strange that he doesn't want to eat.

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Man, that is tough. As a mom, that's your first goal...to make sure they're fed and growing! I am sorry to hear you are going through this. Thank God he has some to spare, and hopefully the docs can figure out what is going on before he uses up all his reserves. I am sorry I can't help or offer advice in some way, just know I'll pray for ya!

Newlywed630's picture
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Sad I hope it is nothing serious and they can figure it out quickly.

momW's picture
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I hope they figure something out quickly so he doesn't have to use all his reserves. Mothers intuition is a good thing to follow, it's served me well over the years. I'm glad to hear you are advocating on his behalf. KUP! And good luck. If you need to talk, we're always here for you.

Can babies get stomach ulcers?

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((HUGS)) KUP!! Prayers.

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Poor guy. Hope they give you some answers soon. KUP

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Oh my gosh, it definitely sounds like something is wrong. I hope they figure it out quickly! :bigarmhug:

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Sorry he is losing weight and hope you get some answers.

What are the side effects of the reflux meds? Could loss of appetite be one?

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Hope they can get to the bottom of things quickly & without too much invasive testing Sad
KUP!!

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Oh wow Sad I am soooo sorry this is happening... I hope they are able to find out what exactly is going on and fix it easily and quickly. BIG HUGS!

KittyRN's picture
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I'm not 100% sure of the side effects of his meds, but the doctor didnt bring that up so I dont think it's that. Plus without them he is definitely in pain.

It's just so weird since he's relatively happy and sleeping well. Just like he's not hungry, but why????

He slept through the night again last night and I was super engorged this am and pretty much had to keep making him eat so I could get some relief (I dont have my pump anymore Sad i borrowed it). He didnt seem to be bad to be eating, but kept unlatching and looking around, or just letting the milk dribble out of his mouth instead of eating it all. But like I said, wasnt acting like he was in pain or mad to be there.

So weird.

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A similar thing happened with dd2 - she was ebf, wanted to be at the boob all the time, but didn't necessarily want to EAT - sometimes just comfort nursed. She was FTT at 9 mths (after losing a couple of pounds) - didn't get back to her 6 mth weight until 12 mths -

ANYWAY, have they done a stool sample? They can test for fat content/blood in stool/etc....

:bighug:

Please KUP

eta: The docs kept telling me my milk wasn't strong enough, etc, but I knew it was something else (Ella cried all night.Every night, though). And just FYI, she has a protein intolerance and likely had some silent reflux going on as well, but she wasn't on meds for it.

KittyRN's picture
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"StateChick" wrote:

A similar thing happened with dd2 - she was ebf, wanted to be at the boob all the time, but didn't necessarily want to EAT - sometimes just comfort nursed. She was FTT at 9 mths (after losing a couple of pounds) - didn't get back to her 6 mth weight until 12 mths -

ANYWAY, have they done a stool sample? They can test for fat content/blood in stool/etc....

:bighug:

Please KUP

eta: The docs kept telling me my milk wasn't strong enough, etc, but I knew it was something else (Ella cried all night.Every night, though). And just FYI, she has a protein intolerance and likely had some silent reflux going on as well, but she wasn't on meds for it.

What did you end up doing for her?
They have checked his stool for blood with he was maybe only a month old, and it was negative. The ped doesnt seem to think it's an allergy/intolerance since he has no rashes and his stools have been normal (visually anyways). Plus like I said, he's not miserable at all, during the night or day. I'm so confused!

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Lurker**

My DS is the very similar. He never shows hunger signs. Is always on the go, and cant be bothered with a silly thing like eating. He is between 5-10% but he has remained on his curve, thankfully. His pedi happens to also be a growth specialist and feels nothing is wrong. But I just think there is. I mean what baby doesnt like to eat? I hope you find some answers, I am trying to find another growth specialist to get a 2nd opinion from but I believe in my LOs case, he would just rather be playing than eating. Which there is nothing I can do about it. I have started back with dream feeds at night to give him a little extra calories. I also have a baby scale and every friday before bath I weigh him to make sure he is gaining. Its any where from 1-6 oz a week, typically onlike like 4 a week. its better than nothing I guess. Good luck and KUP!

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I'm gonna come back and reply when i have 2 free hands!

StateChick's picture
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Kitty, I see that you are bfing - the bottles that you mentioned, is that ebm or formula? He could have a sensitivity/intolerance to a milk or soy protien and just have an aversion to the bottle.

So I can tell you what we did for Ella, I can't fully answer the question WHY she lost weight. But I will say this RECORD HIS WEIGHT. It is usually free to go to the pedi office for a weight check. Use the same scale, and weigh him the same way (with clothes or without, just be consistent).

For Ella, we discussed cystic fibrosis, celiac's (but unlikely cause because she hadn't been directly exposed to wheat), parasites

They tested for blood and excess fat in the stool (both were negative)
Her skin was perfect. Never a hint of eczema. No clue.

She was ebf, but had had rice cereal four or five times and became violently sick after the first couple of times, and then she started rejecting it, but would react from whatever tiny bit I shoved in her mouth (not realizing that there was a REASON she was eating it.). She was ultimately diagnosed with FPIES, but there is not a ton of info known about it right now. A lot of FPIES kids struggle with reflux, failure to thrive, lethargy....

I may just do a seperate thread about FPIES on the board, but I will say it is unusual, although not unheard of, for a baby to have a full-fledged FPIES reaction when he/she is being exclusively breastfed, HOWEVER, researchers are finally admitting that the gut damage can be very real just from the proteins passed through the breastmilk, even if it does not cause a full blown reaction.

So that's Ella's story - any update on your little guy?

It took us from 6months - 9 months for the doctors to acknowledge something was wrong...she went from the 95th% to the 3rd% before we could get an appointment with a specialist!!! So as I said, monitor your little guy's weight carefully, and if he keeps losing, urge them to figure out WHY.

KittyRN's picture
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The bottles I give him are formula as I pump very crappily. I was giving him Alimentum which is milk/soy free but it made no difference so he's getting goodstart now. His poops actually look more like bf poops on the goodstart for some reason. He takes in MAX 4-6 ounces of formula a day, and on a good day.

Well we went to the doctors again and his weight went up. The doctor said that this is the age where the thin out but shouldnt lose weight, so we're keeping an eye on him. He has an ultrasound but not til May. ERG! But we'll be weighing him weekly and if he does start to lose again we'll be doing the testing faster.

The doctor thought that also teething may be playing a role in this. He doesnt really act like his teeth are bothering him, but he said it may just make his appetite less. I dont know. He also said that at this age their kidneys are much better at concentrating urine so that maybe that is why his output seems much lower. He has maybe 3 heavy wet diapers a day. Maybe even just 2. So frusterating!

But he weighed 20 pounds 10 ounces at the doctors, so he's still a big boy. But that is part of the problem, no one thinks it's serious and is waiting til he gets skinny it feels like. Why should we wait until there is a serious problem!?!? At least this doctor does feel his behaviour is abnormal and wants to keep tabs. The other doctors all dismissed me.

So I guess it's just more stressing for me. I am continuing to dream feed in the middle of the night since that is his best feed. I'm also going to start pumping again as i feel my supply is starting to take a serious hit since he doesnt want to eat much, especially in the afternoons/evenings. Hopefully if I can get my supply up he'll have no choice but to get milk even if he just wants to pacify. I missed the engorged days!!!

Thanks for all your support ladies. I'll keep you updated.

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Hey Kitty....sorry I haven't responded before. I'm sorry you are dealing with this. You are right, momma's usually know when something is up...its our 6th sense. Smile Glad to hear that his weight went up this week. :openarms:

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How frustrating. Sad GL with the pumping.

StateChick's picture
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Yeah, when Ella stopped gaining they wanted me to pump and then feed her (so we could see how much she was drinking), but I could pump ABSOLUTELY NOTHING. It was very frustrating.

And I forgot to mention they also did an abdominal u/s for her that came back all clear.

Hang in there, mama - keep an eye on him and keep pushing for any testing that you feel is necessary. (hugs)

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That sounds so frustrating. I hope you are able to get some answers soon! Waiting is a terrible thing to do when you feel like your child's health is at risk. Hang in there.