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

[Anonymous]

OP insist that the ped GI call in a prescription for compounded liquid Zantac. PP is right that Prevacid does nothing to neutralize acid, you need the Zantac, or Mylanta (or both!) for that. The baby is suffering, and more importantly needs fluids and calories. You do not want to end up in the ER with a severely dehydrated baby, their veins are tiny and collapse when dehydrated, been there and it is a horror show. The baby should be nursing 8-12 times per day. Wait and see is not acceptible.

Good for you for being willing to eliminate so much from your diet, I remember how hard it is.

Our old ped GI at Georgetown has left but the whole practice was good. There is also supposed to be a great practice in VA. You can post to the DCUM list and ask for recs based on your area.

[Anonymous]

My son had severe reflux at 2 months. He was spitting up blood. So I sympathize with your situation and I hope it turns around.

I think the other posters have given good advice. The most important thing is to deal with the most immediate medical threat, which is the small amount of nutrition/fluid intake.

The medication that worked for us was prevacid solutabs twice a day. We dissolved them in a small bit of water and used an old dropper to administer. The solutabs are more stable, although I can't imagine this is an immediate problem for you because you just got your compounded prevacid a few days ago. But it's worth talking about for the future visit with the pediatric gastroenterologist.

I do not have experience with combining prevacid and zantac, but I suppose that's something you can discuss with your doctor as well.

Remember that if your baby's esophagus has erosions, it's going to take some time before the healing can begin, even if the prevacid is working. It's miserable, but the medicine should help.

As for positioning, I think you are also doing all the right things. It sounds like the baby is sleeping elevated, you are trying to do feeds in an upright position, and I assume you are trying to keep the baby upright after feedings.

In the end, we needed an upper endoscopy to rule out certain problems and identify the source and cause of the bleeding. An endoscopy can help determine the injured areas, and it also identify some causes, such as whether h. pylori is causing ulcers, whether there is pyloric stenosis, or if there are indications that an allergic component is causing the problem. This could alter the course of treatment, but for us we found that the problem was not due to any of these causes. So we were reassured that we had a clear idea of the location and extent of damage, and we didn't have to continue crazy dietary changes for DW, but the result for us was to increase the prevacid dose and have patience.

[Anonymous]

OP again. The Breast Center is not opened until 10am. Can someone suggest some soy/dairy free formula so that DH can go out and pick this up? I would prefer to breastfeed the baby but I'm desperate at this point and need to be more aggressive with turning this situation around for my son. Thanks.

[Anonymous]

Where is that? We used a pharmacy up in the Spring Valley DC area, think it was at 4900 Mass Ave. There was a good one on Bradley in Bethesda that we used on a Sunday when the other was closed. Google compounding pharmacies.

Good luck to you and your little guy OP. I hope that things turn around quickly for you.

I think the 3 of you are going to love the Mylanta, it works really quickly and makes them feel so much more comfortable. We used to call it Liquid Gold.

[Anonymous]

I"m the PP with the 1yo refluxer. FWIW, we also used Daroo Pharmacy (the CC Supermarket site) - they always insisted compounded prevacid could last 1 month; the ped GI said 2weeks. I hated not knowing if this was part of the problem (he seemed to get more miserable as the weeks went on) so we did the solutabs for that reason.

As for formula, we experimented with Aluminwhatever and Nutramigen, but my big eater didn't seem to like the taste (they do smell awful.) We stuck with Enfamil Gentleease, which our ped GI said was good. After a while we switched to Nestle Goodstart Gentle Protect Plus (green can), which the GI said was better. He's done great on that; whenever I've had to give him something different there's some unhappiness so we're sticking with it for now.

Since you mentioned DaRoo - Do you by chance happen to use Capitol Medical Group? If so, I can recommend Dr. Roche very very highly as a ped with personal experience with a reflux baby - she was amazingly kind to me and my baby even when I came in sobbing and out of my mind.

Finally, with all due respect to all those recommending calling Pat Shelly, and trying very hard not to start something in the midst of your crisis, I want to gently suggest that your problem today is not a BF problem, it is a medical issue with your baby and you really need to see a ped of some sort (ER, GI, regular, whatever.) The BF Center can offer great help for keeping up nursing over the long run, but at this moment you need to get your baby back to eating, and make sure there is nothing else going on medically that might be causing the discomfort.

[Anonymous]

Try ready to feed Alimentum, the liquid. It is also corn free to eliminate one more variable, plus it is easier than worrying about mixing. I believe we bought it at Safeway and CVS. We used it a few times in the same situation, to get calories in while we were waiting for proteins to get out of my milk. You can also get the CVS Cherry Supreme antacid liquid and a syringe on the same trip.

Friends have used Nutrigemen and Elecare, not so sure they are as readily available. It can take trying different formulas but I hope you get lucky on your first try. Good luck to you and the little guy!

[Anonymous]

PP, I am one of the people who suggested calling Pat as well as the doctor. With all due respect, it is a breastfeeding problem, in that the baby is most likely reacting to milk and or soy in the breastmilk. None of the doctors suggested changing the mom's diet in the past 8 weeks and that is likely the root of the problem, in combo with the baby's sensitivities. In my experience and that of friends it took altering diet, feeding positioning, etc. as well as meds. Pat is also most likely to give good advice to OP on keeping up her supply when the baby won't nurse. She has worked with a lot of babies with reflux and knew way more about meds than my ped did. So, I think there is good info to have from both sources. I was also the PP who asked if the baby has had a complete abdominal exam. There are definitely things besides reflux that can cause pain. It was a combo of a second ped GI, second ped, and Pat who turned things around for us.

[Anonymous]

I am all for breastfeeding, but frankly, at this point if I were you I'd just try some of the soy formula. There's no harm in trying formula for a few feedings, especially if it might help your baby.

FWIW, my friend's son also had reflux and was on meds that didn't seem to be working. She finally just tried the soy formula and it was like night and day -- apparently her son just couldn't handle the breast milk. Likely it was an issue with dairy, but at that point, my friend didn't want to resume trying to breast feed because of the pain her son had been in vs. how happy he was now.

[Anonymous]

OP,
We also used the liquid Alimentum. You might want to try Good Start as well, the mill proteins are very broken down and many babies do well on it.

It was actually Pat Shelly who pushed us to try formula temporarily for our own baby who was not eating/gaining. She is far less laisse faire than our first peds practice and less willing to "wait and see". I hated hearing that when I was justifiably frantic. She will have some good advice about turning around your baby's eating aversion. Once you get the reflux meds right it all turns around. Hang in there OP.

[Anonymous]

Soy formula is worth a try but many babies who react to dairy also react to soy (something like 30%+). Two examples building Legos on my floor right now. OP, I'd get a few kinds of formula, if your ped is open your husband may be able to pick up a bunch of free samples. It's trial and error getting the right food and the right meds. It sounds like he has a lot of damage right now too which will take time to heal. So many factors.

I really wish peds were more educated or did more educating about the link between dairy/soy and reflux. If more moms were offered the info earlier and could try eliminating it a lot less babies would end up in bad shape. I had 2 peds at my practice scoff at the idea, then the 3rd gave me a printed out elim diet. We needed to do both diet changes and meds but with milk and soy out the meds actually worked. It seems to be mentioned more with formula feeding moms, they get moved from milk formula to soy to hypo pretty quickly, but if you are bfeeding no one tells you.

My kids outgrew the reflux by 9 months or so.

[Anonymous]

NP here, another mom who's been in the reflux trenches. OP, before you put your baby on a formula, i'd page your pedi and ask what they recommend. ours recommended nutramigen which is completely hypoallergenic but very expensive. to be honest, enfamil AR worked great for us, it's a thicker formula that helps baby keep things down. it's milk based but our pedi said we did not have to worry about milk protein allergies unless there was blood in baby's stool.

as for where to get compounded prevacid, i cannot say enough about grubbs' care pharmacy on east capitol street on capitol hill, and esp. the pharmacist ron thompson. they always had my son's medicine done perfectly and on time, and on more than one occasion had to mix us emergency supplies for travel and always dealt with our insurance for us and were just generally responsive and helpful. def. worth the trip from our house in columbia heights.

[Anonymous]

Good luck OP. Reflux is so hard. My kiddo ate only enough to stay alive so did not gain but was not severely dehydrated. I hope that the formula is helpful. We had to use some until there were less dairy proteins in the bmilk.

We also had to do the diet eliminations, hard when you are frantic and sleep deprived. Make sure to drink something like rice milk or calcium fortified OJ for yourself. To keep things easy I ate like we were in the 50s, meat/chicken/salmon, rice or potatoes or brown rice pasta (Tinkyada is good), vegetables or fruit. The more whole foods the less you have to wory about what is in them. We were fine with the Safeway rotisserie chickens and turkey breasts, having them on hand helped a lot. Oatmeal is really good for your milk supply and those instant packets are convenient. Olive oil drizzled on things is your friend. Take a good vitamin for you and calcium supplements.

Let us know how it is going OP.

[Anonymous]

OP here. Just a quick message to thank all those who have spent time to dispense advice to this worried mom.

My ped GI called back and we are coming in to see her in an hour. I pushed for zantac compound to be used since she did not have any further suggestions. I'm having it filled at Knowles Apothecary (never have used them but both DaaRoo and Village Greene seem to not have their compound "specialist" available).

Temporarily, I will try to switch DS to a formula. I am trying to pick a formula that does not have wheat / milk / soy. Does anyone know if Nestle Good Start have wheat in it? I have put in a called to my pediatrician and the nurse will be calling me back shortly.

[Anonymous]

OP, glad you got an appointment. Also get the dosing instructions for the Mylanta Cherry Supreme (or CVS version). It was the most helpful thing for us in the short run and you don't have to worry about separating it from eating like with the other meds.

Have the ped GI write down dosing instructions. You need to space Zantac and Prevacid from food and Zantac, Prevacid and Mylanta from each other. 3x per day is the best dosing schedule, babies metabolize the meds quickly. Ask what her rec is for formula and ask for samples.

Good Start is milk based, just more broken down.

I hope things start to get better for him very quickly. I'd post on the mail list and get suggestions for a new ped GI in your area for next week. No more suggestions is unacceptable bordering on malpractice for an 8 week old who refuses to eat.

[Anonymous]

Another reflux mom here....We ended up having to switch to the hypo-allergenic forumla Nutriamegen. Also used the Prevacid solutabs. Good luck