medical mystery

[Anonymous]

So we took Evie to the Ped. GI (or his practitioner, I should say.) She was very nice and listened and examined Evie extensively. I told her that I have a miserable baby, who I have seen reflux. Although she only has visible reflux about 3-4 times per week, she spends most of her day miserable and fussy or having just a crying tantrum. She has silent reflux. If I lay her down flat after a meal, she screams and then she starts arching her back, smacking her lips, and has full-on acid breath. This attack ends and then its back to more fussing and just regular tantrums. I am bf and have eliminated all hidden dairy and soy. She is still having mucousy stools, but no other visible signes of a food allergy. Our regular ped put her on 15 mg of Prevacid (7.5X2) for about 3 weeks. No changes. Minimal at best–I administer them appropriately according to marci-kids, you know on an empty stomach and follow up with a full meal. Evie does not vomit and gains weight well. She sleeps poorly during the day but great at night. After I tell all of this to the nurse, she consults the Ped GI on the phone who tells her to tell me to take Evie off of Prevacid b/c she does not have reflux but MSPI. I have been particulary careful about not eating anything allergenic. I also asked her if she could be allergic to anything else in my diet and she doubted my 9 week old would have another allergy/intolerance. She gave me 3 cans of Neocate and told me it is my call. The dr. wants her to come in for an endoscopy and CT scan, blah blah. MY insurance covers Neocate 100%, so I don’t have a problem switching, but would like to remain bf if this is a bogus diagnosis. Can anyone relate? Could she have just good old fashioned colic?? Is colic/MSPI/reflux all just a visious cycle. What is wrong with Evie!?!?

[Anonymous]

dianne just posted a post about this…the thread is called “excellent article….” it talks about “colic” and reflux and mspi.

“colic” is an excuse. in the article dianne posted, it talks about how there is no such thing as “Colic”. dr sears also says “colic” is an excuse they give you when they dont want to look deeper into the cause of the babies discomfort.

15mg is not the marci-kids recommended dose. i would try that. many of the babies on here did not get relief until they were on the marci kids dose.

second, i would not stop breastfeeding. breastmilk is so much better than formula. my son is MSPI, but i recently discovered he is also intolerant to wheat/gluten. maybe you can try cutting that out of your diet. i know eggs bother a lot of babies too.

good luck to you. i just want to add that many of the doctors we have come across have been wrong about my son. we were told he did not have reflux, that he did not have mspi, that he was just colicky….and my ped had never even heard of neocate. please stick to your guns..do your research and be persistant. i wouldnt rule out reflux or mspi/mfpi.

[Anonymous]

Personally I would not give up breastfeeding until I had tried the marci-kids dose for at least two weeks. The ped gi seems to be forming his opinion that she does not have reflux on the basis that the Prevacid is not working, but many babies here (including mine) did not get relief from their reflux until they were on the PPI doses that marci-kids recommends.

Perhaps you can try the full elimination diet to rule out any other intolerances.

I’m sorry that you are going through this. I remember how horrible it is. My daughter was never treated properly for her reflux and it was a long, horrible 9 months. I hope you find the answer soon.

[Anonymous]

It sounds to me like whether she has MSPI or not, she still has reflux that is causing her pain. Will your doctor let you try a higher dose of PPI rather than stop it altogether? Also, I don’t see why you would need to give up breastfeeding if you don’t want too. It might be worth trying the elimination diet like Christine said before you resort to Neocate. Good luck with everything!

[Anonymous]

Hi, I agree re the Marci Kids dose and trying that (do you have enough left of your script to try a higher dose for two weeks?).

Alana was a silent refluxer and did pretty much the same thing, wouldn’t lay flat on her back, acid breath, irritable pretty much all the time (but a comfort eater and gained weight to welll!!

If you want to try the neocate and still leave the option of bf open you could pump???? (I’m pro-breastfeeding BTW, just putting other options out there ). But it would take awhile to see if the neocate was working so you would have to pump awhile.

The right kind of testing might help if the Dr doesn’t understand your little ones symptoms????

[Anonymous]

We have also been told that Hailey has either no reflux or mild reflux at best. I know she has severe reflux. Testing can often be valuable, but even then it’s not perfect. Your doctor should not be telling you to stop BF and I don’t see how he can say that it’s not reflux based on the symptoms you described. Can you get a GI?

[Anonymous]

I eliminated all dairy and soy from my diet when I was trying to bf Kaelyn, but she was still a mess. I was having health issues myself, so I didn’t try any other sort of elimination with her and we switched to formula. Looking back, I’m guessing that it was the wheat bothering her. It is certainly possible for a child to react to more than just dairy and soy.

[Anonymous]

nataliachick7 wrote:

dianne just posted a post about this…the thread is called “excellent article….” it talks about “colic” and reflux and mspi.

Where is this article at?

[Anonymous]

mum4boys wrote: [QUOTE=nataliachick7]

dianne just posted a post about this…the thread is called “excellent article….” it talks about “colic” and reflux and mspi.

Where is this article at?

[/QUOTE]

here you go:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8291&a mp;KW=excellent+article

[Anonymous]

Just curious…

What did everyone like so much about that article?

[Anonymous]

s&h’s mum wrote:

Just curious…

What did everyone like so much about that article?

it tells us that too many doctors use the excuse “colic” as to why many babies are miserable and cry all the time. they dont bother to investigate causes such as allergies/intolerances or reflux. they send you home and tell you there is nothing that can be done, you just have to wait till your baby “grows out of it”.

its a bunch of bs. i know a few moms whose babies have severe reflux, but in the begininng of their journeys they were told that babies either didnt get reflux or that medication was just ludacris for an infant. because it went untreated for so long, these babies just had to suffer because of doctors using the term “colic” as an excuse.

it just isnt fair.

[Anonymous]

nataliachick7 wrote: [QUOTE=s&h’s mum]

Just curious…

What did everyone like so much about that article?

it tells us that too many doctors use the excuse “colic” as to why many babies are miserable and cry all the time. they dont bother to investigate causes such as allergies/intolerances or reflux. they send you home and tell you there is nothing that can be done, you just have to wait till your baby “grows out of it”.

its a bunch of bs. i know a few moms whose babies have severe reflux, but in the begininng of their journeys they were told that babies either didnt get reflux or that medication was just ludacris for an infant. because it went untreated for so long, these babies just had to suffer because of doctors using the term “colic” as an excuse.

it just isnt fair.

[/QUOTE]

This happened with my firstborn unfortunately. I brought him to the ped many times describing how I couldn’t lay hime flat and he cried during feeds, etc. I was told he had colic and he would grow out of it and I needed to wait it out or that he was a high needs baby, etc. Finally when he was 10 weeks old I got an on call doc who said “maybe he has reflux, give him maalox before his feedings” and that was as close to any reflux meds I ever got for him.

He (and I) suffered unnecessarily. He is a very poor eater now as a toddler. Textures gag him now. He only wants to eat smooth things like yogurt. Sorry, I am rambling now. I suppose I should post about that somewhere else. Now that I am learning more about reflux I am becoming more concerned about Kaden and his eating habits and if they will ever resolve.

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