Infantreflux.org | Scared for my baby, Help please!

This topic has 12 replies, 1 voice, and was last updated 16 years, 3 months ago by Anonymous.

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June 26, 2010 at 2:58 pm #66562

Anonymous
Inactive

My baby is so hungry but each time he takes a few swallows he begins making gulping sounds, scrunching his face as if in pain, arching his back and crying. It’s nearly impossible to get him to eat more than 1.5 ounces. Because of this, I’m feeding him constantly and he isn’t getting much sleep since he is often hungry or feeding. I’m so scared for him and it literally makes me sick to my stomach watching him in so much pain while he is just trying to do a ‘simple’ thing. He just wants some food in his little belly but it’s a traumatic event to feed.

Facts

*A premie born at 36 weeks

*Symptoms began at 3 weeks old

*Only formula fed

*Allergic to soy, currenty testing for milk protein allergy

*Tried Similac, Nutramagen, Good Start, and Alimentum.

*Actual feeding is better on Good Start but lots of gas pains

*Feeds worst on Nutramagen and Alimentum but less gas

*Gaining weight, but slower than average

Tried

*Zantac – he’s been on it for 3 weeks with no improvement; tried increasing his dose

*Gas drops and Gripe Water don’t help

*He’s sleeping on his side on a 30degree angle

*Dr Brown’s bottles seem to be best but have tried many other bottles/nipples

*He’s held upright for 30 minutes after feeding

The doctor just keeps dismissing this as colic and sends me home so switched doctors last week. The new doctor is testing for a milk protein allergy (even though he is on Alimentum right now).

I’m completely lost and don’t know what to do. Any ideas? Does this sound like reflux or something different?

Is there any reason my baby may not be able to eat more than 1.5 ounces per feeding? This amount of eating has been consistent since he was a newborn.

June 26, 2010 at 4:07 pm #66563

Anonymous
Inactive

How old is he? It does sound like reflux to me… a few things you could start off and try:

1- Keep the Zantac and give 10mg/kg based on his weight over a 24hr period.

2- Add cherry mylanta supreme (or a generic equal meaning no aluminum) 1ml up to 5x/day to see if that helps

3- probiotics will help with some of his gas pains, but it may get worse before it gets better if he has lots of yeast to kill off.

4- You may need to try elecare/neocate but I would try the other things first since they are so expensive, you won’t really be able to diagnose a milk protein allergy at this age, and he may just have MSPI (milk/soy protein intolerance) and that won’t show with allergy testing.

You also most likely need a PPI like prevacid, zegerid, nexium which will help him much more than the Zantac will.

Check out Laura’s groupie intro, also do a search on here about probiotics we use Kirkman Labs pro bio gold ( you can only order it online, but it is very good and hypoallergenic) I even use it with my dd who doesn’t have reflux or MSPI like my ds did.

Good Luck, you have found a great site and lots of mommas who will help you, maybe alittle slow b/c it is the weekend, but I am sure other moms will chime in as well.

June 26, 2010 at 9:42 pm #66564

hellbennt
Keymaster

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hi &
welcome!

you’ve
found a great place!

the key to
all of this is RESEARCH and, of course, support!

I have a LOT TO SAY! and most of
it is here:

Groupie Intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853

there
is even a link from Groupie Intro for finding a dr near you.

(Anyone
else reading this who has not posted their dr on that link: PLEASE do, as it
helps others! the good AND the bad…thanks!!)

Groupie Intro is
looong, but PLEASE read/skim/scroll
through it & refer back to it, as it TRULY will help you!

so glad you
found us!

~laura

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Zantac dosing- my/other’s question (has axid & pepcid dose,
too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

weight- pounds to kilos- conversion chart:

http://www.sfca.co.uk/match/kilolbs.htm

Probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

hellbennt2010-06-26 21:44:44

July 5, 2010 at 1:11 am #66632

Anonymous
Inactive

Thanks for the two posts and the information.

I’m so bad at math with the Zantac conversion. He currently is taking .6 ml once in the morning and once at night. My baby weighs 10 pounds and is 9 weeks old as of today. What would be the recommended Zantac dose for him? He’s been on Zantac for 5 weeks with no improvement.

I switched doctors but no one seems to want to help because he is showing very slow weight gain and he is not dehydrated.

Can anyone help me with questions or suggestions to approach my doctor with? I’m with Kaiser and I have to be referred to a GI specialist, so far, my doctor is dragging her feet with a referral. Thanks in advance.

July 5, 2010 at 1:36 am #66638

Anonymous
Inactive

Your right, your LO sounds like mine. To me it sounds like reflux, i havent been around the reflux bin like everyone else, im just starting but i honestly feel that in my gut my Vlay has reflux-even though my doc says its colic…

IMO they say its colic when A- they dont wanna deal with it or B-they dont know what is wrong…

I agree with usign the mylanta, that works really good for Clay, he always smiles after i give it to him lol

July 5, 2010 at 11:55 am #66639

Anonymous
Inactive

How much are you able to get Clay to eat in one feeding or do you know his intake of ounces per day?

I have a dr appt tomorrow and I’m brining the whole family because we are going to push this dr until she does something. I’ll let you know what happens. Please let me know if you make any progress.

July 5, 2010 at 12:56 pm #66640

Anonymous
Inactive

His has varied wuite a bit. Before everythign started he was up to 5.5 ozs each feeding and was taking 6 bottles a day. once he started fightign the bottle, he would go about 6+ hours with nothing and then maybe an oz or 2. Now, after switching formulas again and doing 3ML of zantac 3 times a day, i can usually get 4 ozs in him, but nothing more or he will throw up…

I will def let you know…ill be thinking about you and hopefully your doc will help you tomorrow.. 🙂

July 5, 2010 at 7:15 pm #66644

hellbennt
Keymaster

ngarcia wrote: He currently is taking .6 ml once in the morning and once at night. My baby weighs 10 pounds

Can anyone help me with questions or suggestions to approach my doctor with? I’m with Kaiser and I have to be referred to a GI specialist, so far, my doctor is dragging her feet with a referral. Thanks in advance.

I will help you with the zantac dose:
ok 10 lbs
I looked on this chart http://www.sfca.co.uk/match/kilolbs.htm
and 10lbs is 4.5 kilos

maximum zantac dose is 10mgs per kilo, so that means
10 x 4.5 = 45mgs total for the day of zantac
your zantac is in liquid form, so look at the bottle and it says
15mgs/ml
that means that for every 1ml of liquid you give your baby, there is 15mgs of the medicine zantac in it
you can give 45mgs a day, so, to figure that out, you take the 45 and divide by 15 to know how many mls you can give
(1 ml of liquid had has 15 mgs, 2mls has 30 mgs, 3mls has 45mgs)
so: you can give 3 mls total for the day of zantac
you are currently giving .6 + .6 = 1.2 mls a day
you can increase your dose (safely!!) to 1.5 mls and 1.5 mls a day!!!!

DO NOT JUST TAKE MY WORD ON THIS! read here:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

as for how to get a referral?
TELL. do not ASK.
FAX THAT DOCTOR AND KEEP IT SHORT & SWEET:
date
To Dr. you-selfish-doctor-wanting-my co-pay:
I. your name, hereby am requesting a referral for my son, date of birth, to go to a ped GI (here I would PROVIDE the NAME of the ped GI!)
THANK YOU.
sincerely,
your name, mother of son’s name, birthdate

then call to say you sent a fax.
then call again to ask if the referral is ready?
call again. and again.
YOU are the mama and YOU have the RIGHT to ask for a referral. THis is america, gosh darnit

I would find the ped GI on your own and call her/him to make sure s/he takes your insurance: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
this way, you are not relying on your selfish doctor

July 5, 2010 at 9:05 pm #66648

Anonymous
Inactive

Laura,

Thanks so much for the Zantac dosage, I will check the info per your request.

Your fax example made me lol!!! Thank you also so much for that. I appreciate you!

: )

July 5, 2010 at 9:21 pm #66649

hellbennt
Keymaster

ah, sadly you are not the first one to have this problem w/ their god-complex-wanting-the-copay pediatrician!

shame on her/him!!!

seriously, this IS the good ‘ole US of A!
we have rights! you are paying for your insurance! You are the MAMA!
so don’t ask your ped anything anymore: TELL.
and…switch peds while you’re at it 😉

July 6, 2010 at 10:18 pm #66653

Anonymous
Inactive

Hi Laura,

Today at Maverick’s (my son) appointment he was actually down to 9 pounds 15 ounces. I brought my dad and my aunt with me and told the dr. we wanted a GI specialist. I don’t get to pick who the specialist is, but I got a call from one this evening around 5pm. He sounds WONDERFUL! I could tell he thouroughly reviewed Maverick’s history and thought it was ridiculous that he had been on Zantac for 5 weeks with no improvement. He told me that as of tomorrow we are switching to Prevacid and that I can also use Mylanta (1 ml) as needed to see if that helps a bit as well.

If the meds aren’t working by Friday evening, he gave me his personal phone number and e-mail so I can make an office visit next week and he can run some tests.

Please let me know if anything ‘doesn’t sound right’. I’ll keep you posted.

Seriously – I hope you receive many blessings for the good deeds you are doing in this forum. We need more people like you!

July 6, 2010 at 10:27 pm #66654

hellbennt
Keymaster

yay!
ok don’t stop that zantac!!!! it can take up to two weeks for you to see the effects of the prevacid and you never know if it’ll be in the right form or dose at first…so give the zantac too, making sure to space it 4hrs from the prevacid. the mylanta can be given w/ the zantac but NOT the prevacid.

look at the list of doctors and see if he’s listed &
also list your pediatrician and tell others NOT to go to her/him:
https://www.infantreflux.org/forum/forum_posts.asp?TID=660

read about the prevacid so you can know what it is that you want to try for your baby. go to http://www.marci-kids.com and research there…

let us know!

July 7, 2010 at 9:42 pm #66657

Anonymous
Inactive

I just wanted to add that I’m glad you were referred to a GI specialist! And I’m so happy that he sounds so involved with his patients. When you go you may want to bring up MSPI, to me it sounds like your LO may not be tolerating the partially broken-down milk proteins in the Alimentum (the gas, arching, reflux are all signs he is still having trouble digesting them). You might want to ask about an elemental formula. Unlike the hydrolysate formulas (Alimentum, Nutramigen), elemental formulas are 100% dairy-free and are made up of individual amino acids (the building blocks of protein), which are easier for babies with allergies/intolerances to digest. If you want to try samples of Neocate and your GI doesn’t have any send me a PM and I can help you get some samples. Good luck!!
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