Help! When does the pain end for the baby? I've been in tears...

[Anonymous]

My 2-month old seems to have reflux and was prescribe zantac. He went through the entire 2-week trial. It seem to help a little at first, but after a few days he was back to crying in pain particularly during feeding. He has already began having a severe aversion to feeding. As a matter of fact, if we put him in a feeding position he already begins to cry. We typically give him expressed breastmilk in the bottle during the day and breastfeeding at night. Four days ago, our pediatrician took him off of zantac and moved him to prevacid. We have seen a pediatric GI and she gave me some tips with feeding positions and getting a nap nanny (a glorified bouncy seat). We've done everything we could but my son's intake has gotten dangerously low.

In the past two days, he took in about 6 ounces of breastmilk in a 24-hour period. He was dehydrated so we started syringing him with pedialyte to help him make wet diapers. That seems to help although the feeding isn't going much better. He continues to scream in pain when swallowing the slightest bit of milk.

Prevacid was started 4 days ago at 2mL twice a day. The Pediatric GI bumped this up to 2.5mL two times a day on New Year's eve. I don't know if there is something else wrong with my son or perhaps the Prevacid hasn't kicked in yet. For parents whose kids were on Prevacid, how long did before you noticed that the medication took effect?

[Anonymous]

Our dr said 4-7 days and we noticed improvement after 2-3 although DD wasn't nearly as bad as you describe. I would keep calling your dr and don't allow them to push you off with 'let's wait and see'. If you are having to syringe pedialyte I think your dr needs a new plan of attack.

[Anonymous]

I've been where you are and you are right to be very alarmed.

Call the Ped GI on call now. They should have you give Mylanta Cherry Supreme (aluminum free) for breakthrough pain as needed. Some babies react to soy in some versions of Prevacid. Some babies need both Prevacid and Zantac with occasional Mylanta. Zegrid works well for some kids where Prevacid seems to make things worse. Were you using COMPOUNDED Zantac? Regular liquid Zantac can irritate tummies. Refrigerating it? Dosing 3x per day? There is a lot of info on dosages and meds at Marci Kids and on the Babycenter.com Breastfeeding a Reflux Baby board (look at the stickies).

Has anyone recommended that you try cutting dairy and soy from your diet completely? It is quite possible that that is what he is reacting to. Today is Saturday and the Breastfeeding Center at 2141 K is open. I'd call and make an emergency appointment. Ask for a copy of the elimination diet plan (same one my ped gave me, some peds are not as aware). I'd also ask about supplementing with hypoallergenic formula (no milk or soy) in the meantime. Ask them if they would recommend renting a hospital grade pump just to keep your supply up.

You need to take steps to turn this around today or you are going to end up inthe ER. Once you get the meds right and the milk tweaked (one of the big benefits of BM for sensitive kids, you can take out what they react to and it isn't almost $30 per day) he will start gaining. Good luck OP and please let us know how it is going.

[Anonymous]

Anonymous wrote:I've been where you are and you are right to be very alarmed.

Call the Ped GI on call now. They should have you give Mylanta Cherry Supreme (aluminum free) for breakthrough pain as needed. Some babies react to soy in some versions of Prevacid. Some babies need both Prevacid and Zantac with occasional Mylanta. Zegrid works well for some kids where Prevacid seems to make things worse. Were you using COMPOUNDED Zantac? Regular liquid Zantac can irritate tummies. Refrigerating it? Dosing 3x per day? There is a lot of info on dosages and meds at Marci Kids and on the Babycenter.com Breastfeeding a Reflux Baby board (look at the stickies).

Has anyone recommended that you try cutting dairy and soy from your diet completely? It is quite possible that that is what he is reacting to. Today is Saturday and the Breastfeeding Center at 2141 K is open. I'd call and make an emergency appointment. Ask for a copy of the elimination diet plan (same one my ped gave me, some peds are not as aware). I'd also ask about supplementing with hypoallergenic formula (no milk or soy) in the meantime. Ask them if they would recommend renting a hospital grade pump just to keep your supply up.

You need to take steps to turn this around today or you are going to end up inthe ER. Once you get the meds right and the milk tweaked (one of the big benefits of BM for sensitive kids, you can take out what they react to and it isn't almost $30 per day) he will start gaining. Good luck OP and please let us know how it is going.

OP here. I've cut out all wheat, soy, egg, nuts, dairy from my diet as of 12/31 evening. I am only feeding DS what I've been producing and have frozen the previously pumped milk. I will page the pediatric GI today to see if she suggest adding in Zantac although I have a feeling she is going to ask me to "wait and see" and in the meanwhile continue syringing pedilyte as necessary. Btw, I think we were using the prescribed liquid zantac (from CVS) previously. DS hated that zantac and would cry bloody murder whenever he administered it into his mouth. We got the Prevacid at a smaller pharmacy that is supposed to be better at mixing the compound. I am extremely worried at this point. I managed to syringe some milk into my son's mouth while he was sleeping this morning. He is refusing to "dream feed" all together.

Please keep the advice coming. We are feeling quite depressed at this point and willing to try what is necessary to turn this situation around.

[Anonymous]

You need to be on the phone with the GI now. Does your ped have Saturday hours? You need to really push to get him seen, he is so tiny. Pedialyte is not food, I've known a lot of babies with reflux and I have never heard of people doing that. You need to get him better medical help. Has he had a good workup to rule out other sources of pain? Does he projectile vomit? Vomit bile? I'm not clear from your post if he has reflux where he spits up milk orif they are assuming he has silent reflux?

Have them recommend a dairy and soy free formula and try feeding him that. If it works, definitely cut them from your diet.

We also did the Mylanta for breakthrough pain. Prevacid will cut the amount of acid produced but does nothing to neutralize the acid that is there. Also had to cut dairy and soy here, made a difference in a few days and a huge difference in 10-14 days. Sucked, I'm a veggie, but she has outgrown the sensitivity now at 18 months. Even with the diet changes we needed the meds.

[Anonymous]

OP - PP (8:15) is right. Call the Breastfeeding Center asap. Your little guy is NOT getting enough fluids in! The Breastfeeding Center has experts that have dealt with this type of thing before. You could combine the advice from your ped as well as from the Breastfeeding Center. DO NOT WAIT. My DS was not getting enough fluids in early on, and our blood types were different (I'm RH negative) and he was born a few weeks early and he ended up being admitted to the hospital with SEVERE dehydration/jaundice and I felt TERRIBLE because it could have and should have been avoided. DO NOT WAIT. PP is RIGHT. Good luck.

[Anonymous]

OP here. I just paged the pediatric GI and awaiting her call.

[Anonymous]

Also, it can take 2 weeks to clear our dairy, soy, etc from your diet and your little guy can't wait that long. Glad you called - trust your instincts, you are right to be worried.

[Anonymous]

I have a now almost 1yo reflux baby and it seemed to take FOREVER for the Prevacid to kick in. Much more than the week or two that we were told to expect. Eventually the ped GI gave us a regimen that included Prevacid, Zantac, and Mylanta as needed, and after a few weeks on that, things got much better. After lots of reading on the GERD message boards, we made the decision to go with Solutabs broken into pieces to dissolve on the baby's tongue rather than compounded prevacid - it proved much more effective (and by 6 months, he could pop the whole pill in his mouth no problem!)

The awful thing about reflux is that the treatment is all guesswork - you have to try different things to see what will make the baby feel better, and obviously they can't tell you!I'm sorry to say that we also had to switch to formula, and it took a couple of weeks of trying different formulas including the hypoallergenic ones, to see what would work - the ped GI was prepared to move us to the prescription one and gave us a sample to use if we were desperate. If you're not already on the elimination diet, get on it now. I'll be honest and say with 2 kids and no sleep I just couldn't handle removing so much from my diet... plus I felt like I couldn't wait the 2 weeks to see if it would be effective. Once we moved to formula, I pumped tons and after we got a medicinal regimen that worked, was able to mix BM into the formula and that lasted until he was 6 months old. I would have preferred to continue BF solely but honestly I was out of my mind and was desperate for anything that would stop his discomfort.

My little one did the opposite of what yours is doing (he overate to try to comfort himself), so I'm not as smart as the PP about how to handle this. But I have to say that I would consider an ER visit now unless things have improved since your post. Six ounces in 24 hours for a 2m seems really scary low. Good luck and hope you and your baby are doing better soon!

[Anonymous]

Please call the Breastfeeding Center and talk to Pat Shelly. It will take a few days to 2 weeks to see if your diet changes help. If you do the elim diet I think it was only for a few days, you cut way back then add things back in. It gives the most complete info in the shortest time.

You need to have your ped or ped GI and have them call in a script for Zantac to a compounding pharmacy. The mint and alcohol in liquid Zantac could be quite painful, he likely has significant irritation in his esophagus, that's why the compounded is better. It should be dosed 3 x per day. Tell the ped GI that he seems worse on the Prevacid, it happens sometimes. Compounded Prevacid is very unstable, you might be better off trying a version like the Solutabs or going to Zegrid. Call the ped GI and ask about the Mylanta Cherry Supreme (or the CVS version, you want the aluminium free version) and how to dose. It's like Zantac but you can give it far more frequently. You need to coat the irritated parts of his espophagus. We gave it several times per day at first while we were trying to sort things out.

I'd also try a hypoallergenic formula and see if after a dose of the Mylanta he will be willing to eat.

[Anonymous]

Anonymous wrote:You need to be on the phone with the GI now. Does your ped have Saturday hours? You need to really push to get him seen, he is so tiny. Pedialyte is not food, I've known a lot of babies with reflux and I have never heard of people doing that. You need to get him better medical help. Has he had a good workup to rule out other sources of pain? Does he projectile vomit? Vomit bile? I'm not clear from your post if he has reflux where he spits up milk orif they are assuming he has silent reflux?

Have them recommend a dairy and soy free formula and try feeding him that. If it works, definitely cut them from your diet.

We also did the Mylanta for breakthrough pain. Prevacid will cut the amount of acid produced but does nothing to neutralize the acid that is there. Also had to cut dairy and soy here, made a difference in a few days and a huge difference in 10-14 days. Sucked, I'm a veggie, but she has outgrown the sensitivity now at 18 months. Even with the diet changes we needed the meds.

OP here. What dairy formula were you using and where did you purchase it?

[Anonymous]

I agree with switching to the prevacid solutabs. It's not nearly as hard to administer as you'd think- you can try putting it on baby's tongue directly, or you can mix it with a tiny bit of water and use a syringe to feed it. It's much much more stable in the pill form.

Mylanta for break through pain is also a common plan of action.

Might want to consider a second opinion from a different pediatric gi, and also the breastfeeding center for issues related to breast milk/possible irritants to his reflux.

good luck! Don't worry excessively- your baby will be fine, it might be rocky getting there, but he'll be fine. But he needs you to be his advocate and make sure his treatment protocol is right for him, which it doesn't sound like it is currently.

[Anonymous]

I'm that PP. My older kids both were allergic to dairy and soy until 2 so I had already cut them from my diet before birth. We didn't do the hypo formula for that reason. I think I've seen Alumentum or Nutrigemen at Safeway or CVS. Have the ped Gi or the Breastfeeding Center suggest one they think is likely to work. Maybe some other posters can chime in.

I am so angry at your doctors for letting things get to this point with such a young baby. They should have recommended cutting dairy and soy earlier. Mylanta is safe, super effective and prevents additional damage. (Before the big pharma reflux meds it was the standard treatment).

[Anonymous]

Here is the contact info for the Breastfeeding Center.
http://www.breastfeedingcenter.org/consultations.html
We saw Pat there, a ped GI at Georgetown and combined everything they told us, much like a PP.

If the baby is reacting to dairy or soy in your milk than a pillow was not going to do anything. I'd also get an opinion from a second ped GI.

We ended up with me dairy and soy free, using solutabs, compounded zantac, and mylanta for occasional breakthrough. Reflux is something babies typically outgrow by 6-12 months. By a year we were med free and DC eats dairy and soy all the time.

[Anonymous]

OP here again. Aside from Daaroo Pharmacy on Connecticut, is there another Pharmacy that can mix good Zantac / Prevacid?