When do you give up..?

[Anonymous]

…Meaning, when do you give up, and think it may be something OTHER than reflux?? My son is 13 weeks old. He was born 5 weeks early due to placenta previa & placental abruption, I began bleeding heavily, was rushed to the ER and delivered via emergency C/S. At 6 days old, he had jaundice (was sent home from the hospital jaundiced, but they didn’t begin to treat it until 2 days later) and went totally LIMP, we rushed him to another hospital’s ER 40 min. away,where he stopped breathing. They stabilized him, sent us to Children’s Mercy in KC, where he spent 4 days in the NICU on a respirator & feeding tube. MRI showed damage in several areas of his brain.

He has been on Zantac for several weeks, but just this week they changed him to Prevacid (1.75 ml 2x a day) as the zantac didn’t seem to be working any more. Previcid doesn’t seem to be working either. He is miserable. As far as his development, it is normal, he shows no signs of developmental delays ,as one might suspect from the MRI results.

We are about at our wits end w/ his misery… his Ped is awesome, is older and from the Old School of “docterin’ “, he actually gets on the phone & talks to me personally when I call his office, also makes calls himself to check on Gavin’s progress. Wish ALL dr’s were as personally involved/concerned about their patients’ well-being.

Is this the max dose for Prevacid (he’s just at 12 lbs.) ? I hate to keep giving him meds, also giving him infant’s Tylenol for the obvious pain he’s in. The endless screaming is heart-wrenching… not sure what else to DO!!!

[Anonymous]

Hi,

Sorry, this is a quick post so I will get to the nitty gritty. The prevacid can take awhile to work…some mums descirbe up to 3 weeks, most about two weeks. Whether he is on the max dose depends on what amoung of mgs per ml your prevacid is. Many of us mums have had success with the marci kids dose recommendations http://www.marci-kids.com which are a little higher than a lot of drs recommend. I’m not sure whether you have been to their site, but they have a dosage calculator where you can put your bubs weight and age and they will give you their reccomended dose. I personally would suggest pushing for this dose and giving in a good 2 weeks or so. Hopefully this will have good effect for your little one…don’t give up just yet.

Compounding seems to be a bit hard for some pharmacies- they make it so it degrades quickly. Some of the more knowledgable mums will fill you in on this. You might want to look at Zegerid, which is a stable compound. I haven’t used it personally (i would have given it a try if they had it in aus) but it seems to be of good effect to lots of bubs.

The other possibility is some kind of milk intolerance/allergy. Are you bf or formula. Many babies have reflux and MSPI. I’d personally try and get the meds at a good dose first then if that didn’t work look at MSPI.

Goodluck.

[Anonymous]

Therese covered most of it. I agree that you need to give the prevacid more time to work. It took us 3 weeks on Zantac and then 3 dose increases on Prevacid along with a formula change to see a noticeable difference in Cooper. We still have bad days, more just spitting and not sleeping, but I know he isn’t in pain from the reflux anymore as he smiles, spits and then smiles again.

[Anonymous]

The compounding issue is something you should probably look into. It’s very common for Prevacid to be compounded improperly by the pharmacy and then it loses it’s effectiveness right in the bottle, so the baby is essentially getting no meds. Here’s a link with information on it.

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

Hang in there. Once you get the meds right things really do improve. I had a rough time getting Myles on the marci-kids dose of Prevacid, but once I did things really turned around.

[Anonymous]

Hi. I am sorry to hear about all you have been through so far. We also got off to a rough start with Brian…birth trauma in the form of a hematoma and skull fracture and also jaundice…but both his CT scan in the hospital and follow up MRI at 4 mos were normal. I know of another baby who had an abnormal MRI but did not end up having any developmental delays whatsoever so do your best to stay positive about that. I do want to tell you though that when we were

discussing Brian’s head trauma with our pedi and asking about what signs he would be looking for in terms of any possible developmental delays, he did say that inconsolable crying was one of them. Other early signs were the baby not making eye contact, not focusing on faces, clenching his fists alot, projectile vomiting and/or poor weight gain. Some of these are also indicative of reflux so that makes it harder to tell what is going on.

In terms of the reflux, I would try Prevacid solutabs instead of the compounded Prevacid. Brian started out on 15 mgs but at 12 lbs, he was increased to 22.5 mg (the solutabs come in 15 mg tablets so we give him 1/2 tablet in the am and a full 15 mg tablet in the pm). He has done much better since the dose increase but the first few months were ROUGH. We also use a prescription medicine called Carafate which coats and soothes the esophagus. It’s like a super Mylanta. You can ask about that. Or you can try using 1 ml of Mylanta Supreme 10-15 minutes before feedings to help with acid pain. What also helped alot when he was still in alot of pain was me carrying him in the Baby Bjorn front carrier. It was the only way I could get him to sleep during the day for several weeks.

Are you seeing a pedi GI? Also, have you seen a pedi neurologist to discuss the MRI results?

Hang in there and please keep us posted!

[Anonymous]

Thanks for all the helpful replies,you’ve all given me food for thought. He has seemed much better this afternoon/evening (knock on wood) and I am wondering if it’s because he got 5oz of breastmilk today. My supply had went way down after he was hospitalized 2 weeks ago for viral menningitus,seems to finally be picking back up.

Another question: Gavin rarely spits up…don’t most reflux babies spit up a lot? He doesn’t make a lot of eye contact,but he does sometimes,will smile & coo at DH & me & the kids often. I need to ask the pediatrician about a follow-up MRI, I suppose.

SOrry my brain is scattered from sleep deprivation, no, haven’t seen a GI, they were all booked until October! I wonder if he stats up again if the ped will refer him to one?

[Anonymous]

Glad to hear that you are having a better day.

Many reflux babies are called “silent spitters”, mine included. They tend to reswallow their spit up.

I hope you get some sleep soon.

[Anonymous]

Brian was not much of a spitter until recently. The first 3 months he was a silent refluxer where it came up but then went back down. Our pedi GI told us that might change when he got to be around 4 mos old and she was right. In the past few weeks, he has started spitting up more where it’s all down the front of my shirt, etc. But he doesn’t seem to be in any pain from it thanks to the meds so it’s more of a laundry issue right now. We are very slowly starting him on rice cereal this week (he’s 4 1/2 months).

If your pedi calls a pedi GI on your behalf and asks that your baby be seen sooner, they will usually get you in sooner but only if you pedi calls.

Good luck and hope you get some sleep! It does get better!

[Anonymous]

Aha…so THAT’s what a “silent spitter” means! I had read it here & there, but didn’t know what it meant. I have another qusetion; is it also common for relux babies to sound congested after feeding? Gavin seems to sound raspy,like he’s congested….??

[Anonymous]

Yes, sounding congested after feedings (and anytime really) is common for refluxers. I had a spitter and am currently dealing with a silent refluxer who always sounds congested! He’s very raspy sounding all the time and has a chronic cough from his GERD too.

[Anonymous]

Yes, refluxers often sound congested after a feeding. My dd did all the time. Especially if they’re refluxing during feeds. Is he choking when feeding at all?

I’m sorry to hear that you’ve had such a hard time. I really would consider that maybe the compound isn’t being made properly. We had that problem for a long time and didn’t start getting relief until my dd was on a higher dose of PPI- not a pharmacy made compound.

The other thing, is that often babies who have ng tubes temporarily have worsened reflux due to the fact that the ng held the lower esophageal sphincter open, and then it gets kind of lazy. But that’s not all babies, it depends how long it was in there.

Also, I’m glad that your doc is on the ball. If your doc is old school, you might have to give him some marci-kids info to read. Often docs will underdose. I would guess that his dose is probably on the low side based on the info you’ve given.

Good luck. I hope that things get better soon.

[Anonymous]

That’s what I thought. He only souds that way after eating. Sometimes he will be the happiest boy, then begin screaming bloody murder out of the blue… sometimes the only thing that will calm him down is his swing. I feel so bad,I know he doesn’t understand WHY it hurts,and I worry that he may think we are the ones hurting him.

[Anonymous]

He knows that you’re not the ones who are causing him pain. Believe me. Hailey used to scream so loud and hard almost nonstop. She was hurting so much and wouldn’t eat, and wouldn’t sleep, and she arched so badly that it was hard to tell if she even wanted you to be holding her. It was almost impossible to console her. But now she’s so attached to me and so loving and lovable. DH says it’s because I was always holding her and trying to comfort her. All you can do is to try and hold him and tell him that it will be okay. He’ll feel your love. And try to get your doc to up his dose of medication… maybe try zegerid. BTW, does your compound have flavouring in it?

HUGS.

[hellbennt]

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

SAVED us!

[Anonymous]

I have recently heard some other breastfeeding moms of reflux babies talk about infitus bifidus. They say once their baby was on it there symptoms cleared up. I think you would have to get it at a health food store. I tryed probiotics with Justice and never saw any results, but it’s worth a shot. I know I will be trying the infiitus bifidus with my next baby. Probably as soon as it comes out. Those other moms swear by it.

[Author]

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