PLEASE help! Silent reflux, terrible crying

[Anonymous]

Our baby boy is almost 4 months old (born early Feb), and the poor guy is suffering so much from silent GERD (painful cries, arching back, stiffening legs, flemmy breathing and coughing – he rarely if ever spits up though). We need some help! When he doesn’t have reflux episodes, he is the happiest little boy and has such a great disposition.

Here’s a timeline of what we’ve been through so far:

1) Born early Feb at 6 lb 6 oz (2 weeks early)

2) Early weight loss issues due to poor nursing, needed admitted to hospital (but no sign of reflux)

3) Fairly good weight gain while nursing over next 2 months, and no sign of reflux

4) At 2.5 months (April 24th), the first sign of reflux; he cried when feeding like never before – eating decreased

5) Appt with Ped. (April 26th), found nothing wrong, and Lac. consultant suggested gripe water

6) Over the next week, he continued to have reflux symptoms (but we didn’t know what it was at this point), so we went back in to see Pediatrician (different one) on May 3rd; Pediatrician suspected reflux and started him on Prilosec (2 mL once per day)

7) The next day (May 4th) we had a follow up with Pediatrician and were sent to the hospital for some diagnostic tests – the hospital Pediatric doctor did an upper GI study and started him on Reglan (0.4 mL every 6 hours)… we stayed overnight and were discharged, hoping the medicine would help

8) Our son continued to have reflux symptoms over the next 1.5 weeks

9) On May 16th we scheduled an appt with a GI specialist and he ordered some additional blood work/labs, and suggested we start using hypoallergenic formula instead of nursing; however due to nursing problems while dealing with the reflux, we convinced him to stop eating dairy, whey, and casein and continue to nurse

10) His reflux continued for 1.5 weeks despite the diet change, so we called the GI doc and he recommended we start on hypoallergenic formula to rule out any allergies, so we started him on Nutramigen (this was May 25th)

11) After starting him on the formula, his appetite and even weight gain seems to have increased but his reflux in-between eating times has gotten worse. Our poor baby has such painful cries it is killing us to not have this fixed yet.

12) Yesterday we called the doctor and told him the “all formula diet” seems to have made his reflux worse and not better, so he recommended we get the nuclear medicine study for gastric emptying as well as a pH probe study to look at acid levels in his stomach.

13) He also had us stop the Prilosec and Reglan, and instead started him on Carafate (1 mL every 12 hours).

He’s been off the original meds and on the Carafate now for about 24 hours… but today was one of the WORST reflux days! It seems like he got worse yet again! We are happy they are doing studies and trying new meds, but it seems like there must be something more that can be done to help alleviate his pain. We would love to hear anyone’s thoughts or helpful advice. Our poor little guy does not deserve to be in so much pain.

What should we do!?

[hellbennt]

go back to breastfeeding?

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

READ A LOT!!! Arm yourself w/ knowledge!

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

I have a LOT to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

hellbennt2012-05-30 18:45:37

[Anonymous]

Hi Laura,

Thanks for your quick reply. I’ve seen your posts and appreciate all you’ve said and the help you’re providing. I am wondering based on your experience, does anything in our story look odd or wrong to you? Do you think the doctors are doing the right thing and prescribing the right thing? I’ve seen lots of mention of Zantac and Prevacid and wondered if he should be on either of those.

As for breastfeeding, we were specifically asked to stop breastfeeding just to keep the food consistent while the new drug takes affect, and to continue to keep any kind of allergy ruled out.

He is just in so much pain and it’s so difficult! Any other thoughts or suggestions?

Thanks so much.thelundys2012-05-30 19:08:21

[hellbennt]

well, ‘where’ are YOU w/ the whole breastfeeding issue?

if you want to continue, you can make your milk like the formula. I have more to share about this, but need your thoughts first.

sounds like allergy/intolerance to me. especially since this all started at about 2.5 months. this gave the proteins time to build up in his system and thus he reacted/is reacting by not wanting to eat, etc.

& by reflux symptoms

please read best EXPLANATION OF FOOD ALLERGIES/INTOLERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2 to get a better idea of what it is you’re dealing with

& please read Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

Personally I would forget the reglan. I’d work on diet and address pain by giving a PPI

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

and I’d give zantac, too, spaced 4hrs from the prevacid

Zantac dosing– my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

I’d also give the carafate

okay I did a quick search and here is what I found… 3rd post down from Sheri who unfortunately isn’t on much anymore… says space it 2hrs apart.
https://www.infantreflux.org/forum/forum_posts.asp?TID=10620&KW=carafate

Who am I to tell you this? I’m not a medical professional. My baby had severe GERD & I DID give all those meds. not reglan! I stopped that after learning about it & educating myself (here!).

You can ALWAYS back down off of the meds. But for MY baby, meds is what did the trick…

[Anonymous]

Oh dear I feel so badly for you!! You are on a rough road right now. I’m sure you are at the point where you just don’t know what the right thing to do is. With my first child I quit nursing and went to Nutramigen when he was 12 weeks old and with my second we went to formula at 8 weeks. But now I have a 7 month old baby that I am still nursing.

If it is possible to go back to nursing I would suggest that but if not there are still ways to treat the reflux and possible milk intolerance.

When a baby is still in the womb it has no probiotics in it’s system. Probiotics are the good live bacteria that coats and protects our entire digestive tract. A baby picks up these while traveling the birth canal and from nursing and physical touch. If the mom has the baby naturally, eats a healthy diet with lots of fresh fruits and vegetables, has taken no antibiotics while pregnant or nursing (and baby hasn’t taken any either), and there is no history of digestive problems in either side of the family, then the baby will most likely develop the probiotics quite quickly without any reflux or tummy troubles.

If the mom or baby has taken any antibiotics they will not only kill the bad bacteria in the body but also the good bacteria(probiotics). And if there is any history in the family of any kind of digestive problems it is most likely from a pancreas that is not working properly. And this can be passed on to the baby. The most common cause of the pancreas not working like it should is from something called “Pancreatic Exhaustion”. This means that the pancreas is unable to produce enough enzymes to put into the stomach to break down the food. And this is often caused by our poor American diet. All foods have enzymes in them to aid in digestion but they are killed when cooked or processed. When there is not enough enzymes in the stomach to break down our food then the stomach will start producing excess acid to try to break it down. This excess acid will kill probiotics and also cause acid reflux and other digestive problems. In my children it killed the probiotics thus leaving their intestines raw and bleeding. Also without the probiotics to protect their esophagus and throat, not only did the acid push its way up but it burned and caused them to scream in pain. For some babies eating temporarily coats the throat and esopahagus and they want to eat constantly but for some babies everything hurts so badly that they refuse to eat anything.

One of the hardest things for a baby’s (and an adult’s) stomach to break down is protein. This is why babies with digestive problems often do better with hypoallergenic formulas. These formulas have the protein in them broken down extensively.

If a mother will take a probiotic/enzyme supplement while pregnant and nursing she can pass these on to her baby. Also her own breast milk will have the proteins extensively broken down in it so that her baby will have no problem digesting it.

If a baby is formula fed then the supplement can be given directly to the baby.

For my children and myself we take Digestive Health from Core Health Products

If you want to learn more you can go to my blog, My Journey in Finding Answers to my Children’s Acid Reflux and Milk Intolerance

I hope that you will soon find relief for your little one and I wish you the best!! Happy Mom2012-05-31 21:51:35

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