Infantreflux.org | Don't know what to do!!! Help!

This topic has 13 replies, 1 voice, and was last updated 19 years ago by Anonymous.

Viewing 14 posts - 1 through 14 (of 14 total)

Author

Posts
August 27, 2007 at 11:04 am #41767

Anonymous
Inactive

I have no idea what to do with my 7 week old baby. He has been an extremely unhappy baby since day 1! The Ped. seems to think he has reflux, and all the research I have done seems to agree.

I guess I just don’t know where else to turn. No one I know has dealt with this. He cries most of the time unless he is asleep. He won’t sleep anywhere but his carseat or swing. Here lately he’s not sleeping there either. Yesterday he wanted to be held ALL day long, and that’s impossible for me b/c I also have a 2 year old. Every time I’d put him down, he’d wake right back up. Last night was a nightmare. He cried literally all night long. Neither Dh or I could console him.

What should I do? I have had him to the Ped’s office 3 times already. They put him on Zantac, cereal in his bottles, and Alimentum the first time. Zantac was not helping, so he was switched to Prilosec. He’s been on that for a couple weeks now. Nothing is really seeming to make a big difference. He still cries a LOT, and is a POOR sleeper. He sleeps the best on his stomach, but I refuse to let him sleep like that at night. I do let him during the day for naps, but I am constantly checking on him.

I am so frustrated! Here are some symptoms that he has. Can someone please tell me if this sounds like reflux, or just a unhappy colicky baby…He doesn’t spit up though, that’s why I’m not sure what is wrong with him! Should I switch to a different formula?? I thought Alimentum was the most gentle!?

Arches his back when he’s in pain

Gets “rigid” and won’t bend at the waist

Cries after almost every eating, takes a while to settle down

Sounds “raspy” or “hoarse” like he’s congested (he’s not though)

Very very gassy

Wants to be held constantly

Seems like he’s hungry, but then he either gulps it, or spits it out

I would so appreciate ANY advice, or ANYTHING. We are so so frustrated, and I don’t know what else to do!

Kelly

August 27, 2007 at 1:01 pm #41769

Anonymous
Inactive

Hello and welcome,

Yes, that definitely sounds like reflux. I’ve had two reflux babies, so I sure know how hard it is. And it was my second and third babies who had reflux, so I know the hardship of trying to take care of older siblings with a screaming infant in your arms all day.

Zantac is notorious for not working well or working for only a short time, so I’m not surprised that Zantac did not help him. PPI meds like Prevacid/Zegerid have a much better track record for helping babies with reflux. Prilosec is a PPI medication but it has problems of it’s own. It’s what we call a compounded PPI medication. The problem with compounded PPI meds is that they are frequently not prepared properly by the pharmacist. They have to be made exactly right or the drug loses it’s effectiveness right in the bottle. Here’s a link which explains it.

https://www.infantreflux.org/forum/forum_posts.asp?TID=4505&KW=pharmacy+compounded+

Also, many doctors underdose our babies because they are not aware of some current research that shows babies need higher doses of PPI meds than adults and they need 2-3 doses per day because they metabolize these meds 3-4 times faster than adults. You can read about this at http://www.marci-kids.com

So, I’d check to see that the Prilosec is being made exactly right AND that the dose is adequate, OR I’d ask to try another PPI like Preavacid or Zegerid.

Also, it’s a good idea to continue with Zantac (but make sure the dose is high enough) for two weeks after starting a PPI medication because it generally takes two weeks for the full effect to be seen. A good dose of Zantac would be 5-10 mgs. per Kilogram of body weight. Just be sure to space the Zantac 4 hours apart from the PPI.

Cereal in the bottle is controversial because for some babies it actually makes things worse. If it’s not improving things for him I’d just stop thickening. Most babies at his age are not ready for solids and it so it can cause lots of gas and consitpation.

Is he still on Alimentum? It’s best to try a formula for at least two weeks before you decide if it’s working or not. As for Alimentum, some babies do better on the RTF so if you’re using powder it might be worth a try to see if he’d do better on the RTF.

Be sure to look at Laura’s Intro. It has lots of valuable information which may help you.

I’m glad you found us and I hope your little guy is feeling better soon.

August 27, 2007 at 2:14 pm #41774

Anonymous
Inactive

I agree with everything Christine so eloquently said. If you’re going to do prilosec, I’d try to get zegerid. Compounds are so difficult to make correctly, and a correctly made prilosec compound tastes foul. Good luck. I hope your little one is feeling better soon.

August 27, 2007 at 3:26 pm #41778

Anonymous
Inactive

Thank you so much. I’m SO glad I found this place. I was beginning to feel so alone! The Pharmacist that made the Prilosec was an “old timer”. I never even thought about it not being prepared correctly! Also, I didn’t know you could take Zantac AND Prilosec. The Ped’s office told me to stop the Zantac! Goodness! This is like trial and error isn’t it?? I stopped thickening his formula except for the nightime bottle. I didn’t see any difference during the day when I did it. He is still on Alimentum. It’s not proving any miracles to me though. If he was lactose intolerant, would that cause the crazy amount of gas that he has?? Would soy based formula help?

Thank you all so much!!!

kellyg2007-08-27 15:32:59

August 27, 2007 at 3:41 pm #41779

Anonymous
Inactive

Many moms on this site report that soy causes gas and constipation. It’s pretty uncommon for a baby to be lactose intolerant. (Mother’s milk also contains lactose). It’s more common for babies to be MSPI (milk / soy protein intolerant). It’s the proteins they have trouble with, and many who are intolerant to milk proteins are also intolerant to soy proteins. I’d stick with the Alimentum and try to get his meds worked out. Once he’s on a good dose of a PPI (not compounded, or compounded correctly) things will hopefully improve. If not than it’s possible he has severe MSPI and will need an elemental formula like Neocate, but that’s really jumping ahead. Many babies improve dramatically once they are on a good PPI dose.

Good luck and hang in there. It will get better.

August 27, 2007 at 3:53 pm #41780

Anonymous
Inactive

HI and Welcome. I agree with what the other ladies have said. About MSPI from what I have learned…. thickiening with cereal only made Cooper worse b/c the rice cereal proteins mimic the protein in milk and therefore if your lo does have MSPI then that could be part of the problem. We are almost 6 1/2 months old and have only had fruits and veggies. I am going to try Oatmeal cereal next week after we are done with all the fruits and veggie trials. I also wouldn’t give oatmeal or barley cereal until after 6 months b/c of the gluten which can increase the risk for celiac dz. Just a few of my thoughts. I am not a doctor, but my hubby is a pharmacist and I am dietitian, so I am pretty comfortable with all this medical stuff. I just couldn’t imagine going through this if I didn’t have the background that I do.

August 27, 2007 at 4:17 pm #41785

Anonymous
Inactive

Thank you again. I think I may put in a call to the Peds office in the morning. I HATE to call there again. I have already had him there several times. It’s embarassing! I don’t want to be a pest. I will ask about the dosage though. I don’t really think it’s enough. It’s been at least 2 weeks since we went on Prilosec. He’s getting 1cc/ml 2 times a day. Is that typical to start them off on? He was getting 1.5 cc/ml of Zantac 2 times a day. I will stick with Alimentum for the time being.

What kinds of tests do they do to determine anything about Refulx?? I am just starting out with this. My older DD did not have it. I am new to all of this! This site has been a big help already! Is there anything I can do to relieve his gas???? Gas drops are a waste of money I think!

August 27, 2007 at 4:27 pm #41786

hellbennt
Keymaster

this should help you a lot: Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

August 27, 2007 at 7:00 pm #41790

Anonymous
Inactive

That was a big help!!! I have some ideas to start with now!!

Thanks!

August 27, 2007 at 9:09 pm #41800

hellbennt
Keymaster

Babywearing: https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

SAVED us!!

August 27, 2007 at 11:55 pm #41803

Anonymous
Inactive

Hi, Welcome to the board although I’m sorry your little one is having such problems. You’ll get so much more education and direction from the experienced moms on this forum than you will probably get from your doctors, I’m afraid. But you’re the mom – and you know what your little one needs better than anyone else. Hang in there and trust your instincts!

If you have time (yeah, right!!), you might really find it worthwhile to take a look at the book “Colic Solved” by Dr. Bryan Vartabedian. He is a ped GI specializing in “colicky” babies who actually are sick little ones needing help with either reflux or milk protein intolerance. He explains reflux very well and also explains why so many doctors misdiagnose it as “colic”. You might be able to get his book at the library – definitely from Amazon and/or his website http://www.colicsolved.com. I actually sat there and sobbed as I read the first pages of the book. I felt like FINALLY someone was describing exactly what I was going through!

Hang in there! And trust me, your baby and your 2-yr-old won’t remember any of this. My sister kept reminding me of that through my roughest times – and it helped me relax a bit. (So did Noggin TV channel for my 2 yr old…!)

August 28, 2007 at 5:48 pm #41833

Anonymous
Inactive

Thank you so much for the book idea. I think I will invest in buying it ASAP!!! He’s had a bad couple of days, and I’m willing to investigate all options!! I’m waiting on a call from his Ped. as we speak!!

I agree about babywearing too….I have a Moby Wrap, and it is great!!!

My 2 year old does watch way too much TV!! I also feel guilty about that! LOL!

Thanks again!

Kelly

August 28, 2007 at 5:54 pm #41835

Anonymous
Inactive

Well, I am coming in late and the ladies have covered so much, and so full of knowledge they are…

I just wanted to say…HUGE hugs to you. It will get better. I have a 2.5 yr old. He was just over 2 when Landen came along and I cried and cried the first couple of months when Landen was at his worst b/c I felt I was neglecting him so much. I literally had the tv on all day and the poor kid heard the baby crying all day, as well as me. It is a rough time but each week will get better than the last once things get under control. Hang in there!!

August 28, 2007 at 6:11 pm #41840

Anonymous
Inactive

Jill,

You just described my days word for word!!!! Exactly!!!!

I just now went online and bought the above mentioned book. Can’t wait to get it!!

I can’t say enough how glad I am that I found this site!!

Kelly
Author

Posts

Viewing 14 posts - 1 through 14 (of 14 total)

The forum ‘HELP!!!’ is closed to new topics and replies.