Infantreflux.org | Question for CAIOMHE re: bottle refusal

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May 12, 2006 at 3:59 pm #7937

Anonymous
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Hi Tracy,

You answered my last post about Myles refusing his bottles. Thanks for that. Since Ian and Myles are the same age, I wanted to ask you some questions.

Why does Ian not like his bottle? He’s on Prevacid like Myles, so I assume he is not in any pain.

What is Ian eating these days? Is he mostly spoon fed?

What does Ian’s doctor think of his bottle refusal?

I can’t figure out why Myles dislikes his bottle so much. I understand why he refused his bottle before Prevacid because he was in pain. But once he was on the right dose of Prevacid he began to accept bottle feeding quite well. He was never a comfort eater, and he never loved the bottle, but he was doing fine until these last few weeks. I just don’t get it.

Do you have any ideas at all? What are you doing about Ian’s bottle refusal? What does his doctor think you should do?

Sorry about all the questions! I’m just at a loss and figured you might be able to shed some light since you are going through this with Ian, too. Thanks.

Anyone else have any ideas or suggestions? Thanks.

May 12, 2006 at 4:08 pm #7938

Anonymous
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Christine,

I really don’t have any answers for you unfortunately. I have seen the same thing with Hailey though. We go through waves where things are going “better” or I should say bearable, and then we go downhill again with the refusal. Right now we’re not in such a good place again, and it seems to be every few months. I don’t know why. I wish I did. I hope this phase doesn’t last long for Myles. Hang in there.

May 12, 2006 at 4:20 pm #7940

Anonymous
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Thanks Lori,

I wonder if I should take him to the doctor to see if something may be bothering him. I took him last friday and they said his ears and everything were fine, but he did have a fever, so probably some kind of virus. He seemed to get over that and he’s quite happy with no fever or grumpiness at all. He just doesn’t want anything to do with that bottle. On the bright side, he hasn’t thrown up today. He’s been spoon fed all day though. He’s only had two ounces from a bottle so far. We’ll see what the rest of the day brings and after this weekend if he’s the same maybe I’ll take him to the doctor to see if something may be bothering him. All I can say is this kid must have the metabolism of a marshmallow becuase he lives on next to nothing!

I just can’t see spoon feeding this baby from the age of 7 1/2 months on. It’s crazy. Thanks again. I hope things get better for both of our little one’s soon.

May 12, 2006 at 9:25 pm #7958

Anonymous
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Glad to hear at least he’s not vomitting today. Hope he gets better over the weekend.

May 13, 2006 at 8:16 am #7974

Anonymous
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Hi Christine-I just saw this-apologies. I’m running out for morning but promise to reply this afternoon when I can give you my full attention.

Hang in there!! I’m so glad he didn’t have vomiting yesterday.

Tracy (Ian’s Mom 9-26-05)

May 13, 2006 at 9:32 am #7978

Anonymous
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Thanks Tracy. He drank 3 ounces twice yesterday, so that’s an improvement, but he still doesn’t want the bottle most of the time. He only drank two ounces this morning, after going all night with nothing.

May 13, 2006 at 3:54 pm #7992

Anonymous
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Okay, I’m back.

Firstly, I sooo understand what you’re going through right now. It’s incredibly frustrating to be doing everything the doctors say to do and still have problems like this. It breaks my heart. I can only pass along what I’ve learned/and experienced.

First question “why doesn’t he like his bottle?”. I’m not so sure he doesn’t to be quite honest. Ian, like Miles, had bad reflux but also severe mspi. Once we switched to Elecare and Prevacid (30 2x a day) things got much better. He was a dream at 4months-eating really well and happy. Then one day he started showing signs of being backed up-small, loose stools and infrequent. He was also showing weird bearing down signs after eating in his bouncer. It looked like he had to poo. So for a month we tried enemas, laxatives, etc and nothing. Then we got schedule for an endoscopy because he wasn’t eating at all. Finally week prior to endo, he started projectile vomiting with blood. NEVER did I see him show any traditional signs of reflux-I swore up and down it wasn’t that because of his symptoms. Well endo showed a couple of ulcers from severe reflux damage. My dh and I still haven’t figured that one out. Ian was in daycare at the time getting sick left and right (winter) so we figured colds aggravated it. We’ve since taken him out of dc and had one month (at 6 months) where he couldn’t get enough-40 oz a day. Then started to refuse again and slowly worse each day. Now at about 16oz a day. But always he goes the bottle very hungrily and pulls away from what appears to be pain. He grunts, clears throat, cries. So his symptoms now appear to be reflux. They tried to put him on reglan but I’m terrified of it.

As far as spoon feeding goes, not much. He’s only eating bananas and squash right now. Oatmeal failed-no rash or anything but reflux aggravation, big irritibility, and bottles went downhill even more. EVen today he’s crying during all bottle feeds.

I wish I could help you better-I so do. I wish I could make Ian feel better too but we’re all at a loss. He’s growing right now-slowly but growing(he’s really tall). Doctors have many theories (we live in nyc and are “supposedly” seeing the best in the country-gi, allergist, feeding clinic, infectious disease doc, ped). There are concerns he may have esonophillic(sp?) disorder but endo showed negative (I’m going to post under a separate post on this). This is because Ian’s Milk allergy has gotten worse since elecare and his reactions to food tend to be not obvious like rashes, etc). Also, a sign of ed is when reflux is not controlled by ppis (but I think almost everyone with a reflux baby on this board experiences good and bad days).

Sorry, this is long winded (long story). I’m just trying to figure it out myself. I really fear for the day he has to feed himself. He likes solids ok it seems but drinking causes him pain and he completely gives up defeated. It sounds like Miles really has disdain for the actual bottle though. The vomiting Miles is having is also a big concern – is it projectile or large spit ups? Ian hasn’t done that in a couple of months. Not even spit up really. What is good though is that Miles is eating a good variety of foods. You still may want to try a different formula to see if it helps. Soy is a big allergen for kids. Did they ever diagnose Myles with why he has reflux? That would help alot too. With Ian we know it’s mspi. What have your doctors told you??

It’s all scary and tainted. Just want to enjoy my baby and move past this already! Big hugs to you both!

Tracy (Ian’s Mom 9-26-05)

May 13, 2006 at 5:01 pm #7999

Anonymous
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Thanks Tracy…I really feel for you. It’s so scary..and so frustrating to not know why you’re baby won’t eat.

No, they never told me why Myles has reflux. I didn’t know there were different reasons.

His vomiting is large, projectile vomiting. Like everything he ate all comes up. He’s still hungry after and wants to eat (with the spoon, not the bottle).

I’ve never really considered a food sensitivity with Myles because as soon as he started the 30mg of Prevacid daily, he was eating fine. That continued for months. And his diet hasn’t changed at all in months, except for the variable of what may be in the breast milk each day.

Myles doesn’t have any poop problems or sleep difficulties. That’s another reason I haven’t considered a milk or soy sensitivity. He’s very happy most of the time. Spoiled, but happy!

How do you check for MSPI? Is there a medical test?

Myles is drinking mostly frozen breast milk, so there could be dairy in that. I’d hate to toss it all, but if that’s what’s bothering him, I will. What formula is best for MSPI?

I wish someone could just tell us what the problem is and what to do about it. I know what you mean about just wanting to enjoy your baby. Myles is my last and I cannot enjoy his infancy at all. I’m just waiting for the day he is a toddler and hopefully this is all behind us. It sucks to not be able to enjoy the beautiful baby God gave me because I’m so worried about him all the time.

BTW – I’m originally from Long Island. I miss NY in lots of ways, but like the small town life, too.

Thanks for answering my many questions. I’m going to do what I’m doing for a few more days (spoon feeding when he refuses the bottle) and if he continues to push the bottle away I may take him to the doctor next week to see if something may be bothering him that I’m missing. If that gets me nowhere, then I’ll try one of the specialty formulas for two weeks. I don’t really know what else to do. Thanks again. I hope Ian improves and starts feeling better and eating better soon.

May 13, 2006 at 6:53 pm #8003

Anonymous
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Christine-big projectile vomiting like that is not normal. Do you have a ped GI? Can you force them to address it? The way mspi works is the proteins build up in the system and then the child starts to react-it could be a few days or a few weeks. Soy traditionally can make kids vomit. Can you try alimentum for a week or two and keep your breastmilk frozen just to see if it helps? He may have a hard time with the taste at this age but they tend to like the texture of the ready to feed? We never had a test but we were on nutramagin for 5 days and Ian was a new baby (after breastfeeding and goodstart) and then reflux hell!! Our GI here said that was a major sign of proteins building up and after a month on elecare-things went really well(and it’s a rollercoaster now but I’m sure better then if we stayed on it). You could do an endo but perhaps alimentum first?

I’m so not a doctor but I’d definitely find one you like that’s a specialist. Where did you say you live now? Maybe I can help you find one? I belong to castle connolley online and have access to best physcians in different states. Also, reflux can be for various reasons-some scary, some just normal outgrow kind of things. Ian’s was mspi but I’ve heard imature sphincters, hirschsprungs, pyloric stenosis, etc. List goes on-I’m sure for many things I don’t know.

Hope he’s eating better today??

Tracy

May 13, 2006 at 8:26 pm #8004

Anonymous
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OMG…I thought big projectile vomiting was normal for Reflux! He did have an Upper GI at 5 months of age and it ruled out Pyloric Stenosis. It did show moderate Reflux. Maybe I better take him to a Ped. GI. I haven’t yet because I thought this was all normal for reflux and his doctor said he’d outgrow it with time. I am worried because the vomiting is worse now than it has been in a long time.

What is hirschsprungs? Sounds very scary

He only threw up once today and took 9 ounces total in three bottles, so he’s a little better today. My personal opinion (being his mom) is that it is something “mechanical” and not a food senstivity because he’s been on breast milk from birth and soy since one month. He sometimes goes weeks with no more than a few little throw ups or none at all. Then all of a sudden he’s throwing up multiple times per day. There’s no pattern at all and his diet is exactly the same. He only gets soy at bedtime and until lately didn’t throw it up very often. And he sleeps very well, waking only once or twice for his nuk, and then back to sleep, or he talks to himself for a while and goes back to sleep. So, he doesn’t seem to be uncomfortable at all.

So, I don’t think it’s his diet, but who knows? Thanks so much for your advice and information. I will definitely talk to his doctor next week, and probably take him to a Ped. GI if it doesn’t improve very soon.

How’s Ian?

ndrose2007-6-20 23:39:30

May 13, 2006 at 9:14 pm #8013

Anonymous
Inactive

Christine:

We saw Dr. Blahfaus in Fargo – let’s just say my impression wasn’t good. All he did was talk – really didn’t listen. He said “oh you just have a fussy baby”. He was OLD (no offense against old people – older people can still be up to date on current treatments but I think he chose not to) and really didn’t want to hear anything new, especially when I brought up marci-kids. I know there is one in Sioux Falls too but don’t know his name, of course that would involve a lot more travel.

Hope you can find out something soon!!

May 13, 2006 at 9:47 pm #8019

Anonymous
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Robin,

Thank you, thank you, thank you for the info on Dr. Blahfaus. I will make sure I don’t go to him. I’ll drive where ever I have to if Myles doesn’t improve. Maybe there’s someone in Bismarck. I’ll check with Myles’ doctor on Monday and see who she recommends. She’s usually terrific with her referrals, but if she mentions his name I’ll ask for someone else.

Myles only threw up once today and once yesterday and he drank 3 ounces three times from a bottle today, so he’s better. I hope he’s on an upward trend again. But these days I’m afraid to be hopeful.

Did Kayla have reflux with vomiting, or silent reflux? Did she outgrow it suddenly, or was it gradual?

ndrose2006-5-13 21:48:41

May 13, 2006 at 11:25 pm #8022

Anonymous
Inactive

I did some searching and couldn’t come up with another pediatric GI in ND. Who knows, maybe if you are able to get past his personality, maybe he would be able to help out with Myles. When we saw him, Abby was pretty stable (just cranky) so maybe he would have ideas for a situation like yours. You have been suffering a long time with this – it may be worth a try if there is no one else.

Both Kayla and Abby were silent refluxers. Kayla wasn’t as severe as Abby and was able to find relief with only Pepcid. She gradually outgrew her dose and I never saw any more reflux at about 9 months. Once she got on the med, the problems seemed to disappear. We tried Pepcid with Abby and it didn’t even touch it.

Please let me know what you find out. Take care!!

May 14, 2006 at 7:28 am #8025

Anonymous
Inactive

So sorry you are dealing with bottle refusal, I know how frustrating it can be. We dealt with it for about 5 months and for us it was because Tyler was MSPI and couldnt tolerate his formula. After 6 weeks on Elecare he began to take his bottle again and now is quite good with his bottles.

I really hope you can find a good ped GI – it really makes all the difference. Good luck.

May 14, 2006 at 9:50 am #8033

Anonymous
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Thanks Robin,

I think I’ll still avoid him because of his age. I know that sounds bad but my experience with older doctors is that they are often stuck in the past with their experience. If there’s no one else I may have no choice but I will look around and maybe have to go to Minneapolis or something

Thanks Amber,

I’m glad Tyler is doing better on Elecare. Hopefully Myles will start eating better soon.
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