Infantreflux.org | HELP! Conflicting Medical Advice for GERD

This topic has 14 replies, 1 voice, and was last updated 16 years, 2 months ago by Anonymous.

Viewing 15 posts - 1 through 15 (of 15 total)

Author

Posts
July 16, 2008 at 9:32 pm #54078

Anonymous
Inactive

Ugh. Another exhausted stressed mama…

DD2, 6 weeks 2 days, has suffered from GERD symptoms since birth. At 4 days, she spit up a large quantity of breast milk with bright red blood. Due to this and other confirmed GERD symptoms, at about 2 weeks old, we started Zantac and have increased the dose 2x without any noticeable relief. Dr. #1 in pediatric group had approved Prevacid if the latest increase did not help.

At a f/u appt. for GERD and resistant thrush infection (started 5 weeks ago; symptoms appear to be limited to me), Dr. #2, writes out a script for Prevacid, but wants me (1) to stop breastfeeding for two weeks and instead give DD hypoallergenic formula and (2) possibly try Axid samples before trying Prevacid. My own research has shown that BFing is normally better for GERD than formula, and I did not see any research to support discontinuing BFing due to GERD. I have eliminated dairy from my diet already (preventative measure because DD1, now 6, was sensitive to dairy, had colic and what I now believe was undiagnosed GERD; no ongoing milk sensitivity). I cannot freeze pumped milk due to thrush and fear that pumping will disrupt my supply. Not to mention, how can I possibly have time to pump enough to maintain supply with a fussy GERD baby?

Per Dr. #2’s advice, we switched from Zantac to Axid a few days ago. The last two days on the Axid have been MISERABLE! DD has had hours of unconsolable crying and has just been miserable. She seems much worse than before. Meanwhile, Walgreens cannot fill the Prevacid script because Dr. #2 wrote it for a dosage that does not exist. Dr. #2 is off for a couple of days and nobody in the practice can fix her mistake. I had the office call Dr. #2 at home, but she will not fix dosage without speaking to a GI specialist re. dosage. Apparently, some doctors in my pediatrican group will prescribe Prevacid for newborns, others refuse to to so before the age of 1. It is my understanding that I will not be able to get into a GI specialist for at least 2 months.

I expect to speak to Dr. #2 tomorrow assuming she remembers to call. I was hoping to be armed with the following info if possible:

1. Whether her recommendation to use formula for 2 weeks is advisable (I suspect that it is not but would like info). On the AAP website, the linked study only seemed to suggest changing to hypoallergenic formula if you were already using formula, not BFing.

2. What are the risks/safety of giving Prevacid to 6 week old?. Is Prevacid riskier than Zantac or Axid? I noticed that Axid is only FDA approved for children 12 and up, while Prevacid is for ages 1 and up.

I found the dosage calculator on MARCI-Kids to help clarify that issue. If I had studies from reliable sources, that would be helpful. I have started to do some research on my own (in my free time), but I am overwhelmed by all of the information and did I mention that I am exhausted?

I would GREATLY appreciate any guidance. TIA!!!

July 16, 2008 at 9:42 pm #54079

Anonymous
Inactive

1) As for bf’ing, Dr. Vartabedian (authour of Colic Solved) talks extensively in his book about how bf’ing is the best option for reflux babies. I don’t have any links from that & you probably won’t be able to get the book before tomorrow, but in case you are interested later.

Dr. Sears does as well @ this link (http://askdrsears.com/html/10/t106004.asp) – #6 under “17 ways to treat reflux”.

Also, this link from kellymom.com

http://www.kellymom.com/babyconcerns/reflux.html#help

I personally would not see that ped again, but that’s just me.

2) My ds has been on Zantac since 2 wks old & Prevacid since 4wks old. Both ped & ped GI were ready to start Prevacid @ 4wks old. I can’t speak for the risks but I can say that Prevacid provided the needed relief that Zantac did not. I’m pretty sure that Zantac & Axid are basically the same thing… they are both H2 blockers.

HTH

erinntx2008-07-16 21:49:55

July 16, 2008 at 10:14 pm #54080

Anonymous
Inactive

Prevacid is a PPI (proton pump inhibitor) and Axid and Zantac are H2 blockers. meaning they reduce the acid production and the PPI actually stops that body from producing the acid. So the prevacid is stronger and more effective. We started at 10 wks but that is b/c we didn’t use Zantac until 8wks b/c I couldn’t figure out what was wrong. We def would have started sooner if we had known. They all are safe for babies so don’t worry about that. What dose of prevacid did your doc write for? I am confused about it not exsisting… I would stick with bfing but I might cut out all dairy and soy even hidden as many reflux babies has MSPI (milk/soy protein intolerance) and that is the best way to figure it out. I am sure some other moms will chime in as well. Glad you found us.

July 16, 2008 at 11:07 pm #54082

Anonymous
Inactive

All 3 major PPI manufacturers have studies underway to have their brand meds approved for infants by the FDA.

http://parentingsolved.typepad.com/parenting_solved/2007/05/infant_reflux_a.html

Here is a great read regarding PPIs.

https://www.infantreflux.org/forum/forum_posts.asp?TID=6026

Marci-kids is affiliated with the University of Missouri-Columbia. They are real doctors doing real research to help our little gerd-lings. Here is some of the research used by them and some of the research they are doing.

http://www.marci-kids.com/research.html

Here is a good link about the “hidden” dairy and soy. I did not breastfeed. There are many great reasons to breastfeed, especially to a reflux baby. If you do decide to go with formula, I would start with the hypoallergenic formulas (Alimentum and Nutramigen) for at least 2-4 weeks. If the hypos don’t seem to do the trick, then you can move to the elemental formulas (Elecare, Neocate, Nutramigen AA).

http://allergyadvisor.com/hidden.htm

July 17, 2008 at 7:03 am #54083

Anonymous
Inactive

Your experience sounds a lot like mine several months ago. I was also told to pump for a couple of weeks and give a hypoallergenic formula, but I couldn’t because like you said, no time and it would affect my supply (I’m a horrible pumper!) So I found info on this site about the TED (total elimination diet), and I went that route — it greatly helped my son, who had multiple food protein intolerances (MFPI).

Bottom line — you can, through diet changes, basically make your milk the equivalent of a hypoallergenic formula — you can find out if your daughter has protein intolerances through the TED or going dairy/soy-free (as a start). Don’t let the doc tell you otherwise.

Even when you eliminate all possible protein intolerances, your daughter may still be in a lot of pain from just plain ol’ GERD. A lot of babies on this site still need meds to manage the GERD pain even after going on hypo or elemental formulas (or TED breastmilk). My son was like this and needed the marci-kids dose of Prevacid. We started him at around 1 month (can’t remember exactly). No one wants to medicate a baby that little, but when they’re hurting that bad, they need relief or else they may develop more serious problems (like a feeding aversion). Anyway, we also went through Zantac and Axid with no relief.

If I were you, I would look into possibly TED and also getting your daughter on a high dose of a PPI. SWITCH DOCS if you have to — we did three times until we found someone who would give us 30 mg Prevacid, and then we FINALLY had a happy baby.

Good luck!!

July 17, 2008 at 7:14 am #54084

hellbennt
Keymaster

poor you! poor baby!!!

there’s so much to learn & who has time w/ a shrieking baby? YOU. You have already found this board & are already trusting your mommy instinct! Please DO NOT stop breastfeeding if you do not want to! And it sounds like you do not want to!

PLEASE CLICK HERE!https://www.infantreflux.org/forum/forum_posts.asp?TID=10133&PID=87611#87611

Wondertime article/colic solved: http://wondertime.go.com/learning/article/interview-colic-expert.html

July 17, 2008 at 8:15 am #54085

Anonymous
Inactive

These wonderful ladies have covered what I would have said. Just wanted to welcome you with a “hello” and tell you that this will get easier.

We had the best luck with a good dose of a PPI drug. I did not breastfeed, but I agree that it is the best for GERD as it is easiest to digest. We ended up using Neocate formula.

Good luck! You’ve found a great place!

July 17, 2008 at 9:47 am #54086

Anonymous
Inactive

Okay…..here is my opinion. I tried to BF all 3 of my babies. All 3 of them ended up on Neocate and all of them were happier, so was I. Having said that, BF is the best for any baby, assuming it can be a working thing between mom and baby. But sometimes it doesn’t work. I think it is really up to you to decide what is going to work best for you and your baby. My advice….decide what you are willing to do to try to make the BF work, set a time limit on it, and then do it. If things don’t drastically improve, go to the Neocate. Then you can do it guilt free knowing that you really tried. And…lots of babies do really well on Neocate. Just my opinion.

July 18, 2008 at 9:55 pm #54176

Anonymous
Inactive

UPDATE: I spoke to the pediatrician, who called in the prescription for Prevacid – again. During our conversation, she reiterated how switching to formula might help. I was prepared with statistics and plenty of research to support that BF is preferable to formula for GERD in the vast majority of the cases. Now that I know where things are with the pediatrician, I am working to schedule with the GI specialist, hopefully sooner vs. later. The medical records were faxed over this morning, but I did not get a call back to schedule the appointment yet. Fortunately, DD2 is gaining weight well (primarily silent reflux so she gets nutrition, plus comfort feeds), even though she is miserable. I will definitely try and schedule appointments with other more BF friendly Drs. in the group. I will continue to position her to ease discomfort (often sleeps in Boppy bouncy seat with a good incline), watch my diet and work to see that she gets adequate hind milk. I am on an incredibly limited diet (no dairy, carbs, sugars, fruits, etc.) already due to a persistent, resistant and spreading case of thrush. It will be hard to do an elimination diet on top of my other limitations. I will definitely avoid the more common allergens for now and work on a true elimination diet once the thrush clears. If all else fails (or if the thrush persists beyond bearable levels), I will keep an open mind re. formula.

I am still working my way through the material and have bookmarked lots of great sites. Thanks so much everyone for the prompt support and advice! There is so much to learn!

July 18, 2008 at 10:41 pm #54180

Anonymous
Inactive

i am assuming that you are saying that the thrush infection that appears to be limited to you is on your breasts, since you are breastfeeding? if that is the case, you and your child both need to be treated at the same time—even if your baby is not showing any obvious symptoms. if you are having this much trouble with yeast, there is a good chance your baby is, also—–don’t believe your doc if he says esophageal thrush is rare—two of my kids have had it with no obvious symptoms in their mouth.

we had this same scenario a few years back and i asked if sylvia could have thrush without it being obvious. family doc said no—ped gi said, yes, it could be in her esophagus. (i couldn’t get both of us treated at the same time because of docs on vacation) we treated her for esophageal thrush and she started to sleep, eat and gain weight. i quit nursing, but she was 16 months old at the time and i wasn’t being treated yet.

just my opinion, but i would not quit nursing yet and would insist on both you and your baby being treated with a good course of diflucan—not the crappy nystatin.

call the ped gi’s office and ask to be put on a cancelation list, it might get you in sooner.

July 19, 2008 at 1:51 pm #54210

Anonymous
Inactive

kevieb wrote:

i am assuming that you are saying that the thrush infection that appears to be limited to you is on your breasts, since you are breastfeeding? if that is the case, you and your child both need to be treated at the same time—even if your baby is not showing any obvious symptoms. if you are having this much trouble with yeast, there is a good chance your baby is, also—–don’t believe your doc if he says esophageal thrush is rare—two of my kids have had it with no obvious symptoms in their mouth.

we had this same scenario a few years back and i asked if sylvia could have thrush without it being obvious. family doc said no—ped gi said, yes, it could be in her esophagus. (i couldn’t get both of us treated at the same time because of docs on vacation) we treated her for esophageal thrush and she started to sleep, eat and gain weight. i quit nursing, but she was 16 months old at the time and i wasn’t being treated yet.

just my opinion, but i would not quit nursing yet and would insist on both you and your baby being treated with a good course of diflucan—not the crappy nystatin.

call the ped gi’s office and ask to be put on a cancelation list, it might get you in sooner.

Very interesting re. the esophageal thrush. I have repeatedly asked if the infection on my breasts could be causing/complicating her reflux and was advised no, because there was no visible infection in her mouth. Thrush started with my breasts about 1 day post discharge. I have taken Diflucan for a total of 4 weeks. At about 3.5 weeks into by Diflucan treatment, the thrush spread to my mouth. My 6 year old daughter may also now have it in her mouth too (white tongue/sore throat), notwithstanding my herculean efforts to sanitize. Since it appears to be a resistant strain, they swabbed my mouth to determine the strain and sensitivity to particular medication. Once we have the results, we can hopefully find a medication that can treat me, DD1 and DD2. DD2 has received Nystatin and 2 courses of gentian violet. I am due to repeat GV again, which may give DD2 some relief if it is a complicating factor. I have an appointment with a specialist for me on Monday (after weeks of waiting). I am happy to hear that the pediatric GI doctor will be able to help DD2 with our thrush issue. Unfortunately, my OB, GP and the pediatrician’s office have been unable to come up with alternative solutions once the first line treatments failed us. I will definitely ask to be put on a cancellation list, or otherwise call in as needed to see if there are any cancellations. This has gone on far too long!

How did you get rid of thrush anyhow? I have been trying GSE, GV, Diflucan, probiotics, APNO and Motherearth Thrush cream without success.

July 19, 2008 at 2:46 pm #54211

Anonymous
Inactive

unless you and the baby are being treated at the same time, you are going to have a dickens of a time getting rid of it—if at all. our ped gi told me that esophageal thrush really is not that rare, especially in someone with a chronic problem—such as reflux—it is just that regular docs just don’t see it—my guess would be because they don’t know that much about it.

sylvia had had thrush in her mouth and i had had it on my breasts. i probably had it for 6 months or so—and that isn’t the easiest place to scratch!! i think sylvia had a couple of courses of nystatin and it disappeared from her mouth. she was past her fundo, but still not gaining well because she had started to refuse to eat. she would either refuse food, or she would chew it and then spit it out. she had also started making a funny sound in her throat. the ped gi said the only way he could know for sure was to do a scope, but thought we should go ahead and treat for it. when she responded so well to treatment, he felt that if she needed antibiotics again that it should be followed with a course of diflucan in the future. personally, i think that the nystatin is not very effective because it does not treat systemically. i don’t think i would ever use gentian violet again, in fact, i think the last time i used it was 24 years ago on my oldest son!

when my older daughter had esophageal thrush, she had never had any obvious thrush in her mouth. she had a scope done because of her reflux and you could see the white bumps all over the surface of her esophagus.

after i quit nursing sylvia, i finally got a cream from my obgyn that was a combo of a cortisone cream and a yeast cream. it cleared right up since sylvia and i were no longer spreading it back and forth.

it sounds like you and both of your daughters all need to be treated at the same time. yeast can be such a bugger!!!! (what is GSE and APNO?)

kevieb2008-07-19 14:48:21

July 20, 2008 at 8:17 am #54219

Anonymous
Inactive

kevieb wrote:

it sounds like you and both of your daughters all need to be treated at the same time. yeast can be such a bugger!!!! (what is GSE and APNO?)

I totally agree that we will need to all be treated. The key is finding which medication to use if the strain is resistant to Diflucan. I am unaware of any other medicine that is used for newborns. I am hoping that my lab results (strain/sensitivity) will be in before my appointment with a specialist tomorrow afternoon.

GSE = Grapefruit seed extract

APNO = All purpose nipple ointment (available by prescription at compounding pharmacies)

Both are described in the Jack Newman protocol for treating thrush:

http://www.kellymom.com/newman/c-candida_protocol.html

July 20, 2008 at 12:34 pm #54224

Anonymous
Inactive

I was going to suggest probiotics, but you mentioned that you’ve already tried that… bummer… however, I do know that it can take quite some time for the good bacteria to really take effect. I would keep taking them and giving them to your girls, even if you don’t see immediate results. It can’t hurt, and can also help with dd2’s digestion and reflux. Just be sure that they are milk/soy free, as you mentioned possible food sensitivities.

July 23, 2008 at 9:09 pm #54368

Anonymous
Inactive

UPDATE: First for the reflux issues, after starting Prevacid, we had a couple of very good days, followed by a couple of very bad ones. DD2 has been very fussy with eating (acting like she is starving but then only feeding for 5 minutes before starting to scream and cry; very gassy; refluxing for a couple of hours after a feeding day/night). Just when you think you have turned a corner… I have been avoiding the major allergens to play it safe. Yesterday, I accidentally ate a product with hidden soy. I am discovering how many items have soy. I also had a little bit of cheese that I was unable to pick out of a salad. I have eaten yogurt in the past without any problem so dairy may be OK.

We have an appointment with a pediatric GI doctor on August 14th. I have also found a pediatrician who has her own practice. She is pro-breast feeding and has a very good reputation. She is a parent with children in DS and DD1’s grades, so I know we will be in good hands.

As for the thrush, the infectious disease doctor confirmed that I have a systemic, resistant case of thrush. I have 3 new prescriptions, plus gentian violet, grapefruit seed extract and probiotics.

Between the allergy elimination (i.e. dairy, soy, nuts, shellfish), normal BF elimination (i.e. broccoli, garlic, spicy foods, etc.) and Candida diet protocol (no sugars, carbs, fruits, mushrooms, etc.), my diet is restricted to the point that I can only eat lean organic meat and most vegetables. I recently read that commercially raised meats with antibiotics will make the infection worse which makes it difficult to eat restaurant food. I have lost too much weight and I am weak, exhausted and discouraged.

My head hurts from trying to figure out what to do (that and the hours of a crying baby). Sigh.
Author

Posts

Viewing 15 posts - 1 through 15 (of 15 total)

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