Hellbent and others who have been around

[Anonymous]

Sorry….your pm is full.

Hi,

I want to thank you because I have read so much on this site, and you are so involved…..thank you for putting so much information out there to help people like me.

My son just turned 13 months. Medicated for reflux since 3 weeks old. Stopped nursing at 11 weeks. I have pumped since….but he is difficult to bottle and solid feed. Evaluated by feeding therapy team and swallowing study showed he was able to eat mechanically, and he has age appropriate feeding skills….it is more of a behavioral thing. We eat with television or toys to make it fun and stress free. At 13 months, he is up to 26 pounds….so he is obviously thriving. We weaned off prevacid and at 12 months he started having major issues again. so he went back on meds, but our gi does not want him on 30 mg because she said it is depleting his body of the ability to absorb nutrients. She recommended him having a scope….so he did yesterday….and all looked good, had minor esophogitis near lower part. She said we would have biopsy results next week,but she also mentioned having a ph probe done. :(. I do not want to out him through that. I mean, he is thriving….and there was minor inflammation. Why would I want to do a probe study. She mentioned he is young and still has time to grow out of this awful disease.

I have some issues with him. He still refluxes at 13 months….I can hear it. But if the inflammation is minor, I am not greatly concerned. The meds must be working, right? My biggest concern is his overactive gagging….sometimes he gags at the sight of food….or on textures. He will throw up if he is crying a lot! But to my understanding, and from all I have read on the site, this should improve with age. He sometimes an be difficult to feed, but other times he eAts better than my daughter,

I want to believe that he just needs more time, I wish she had not me tined the probe. I have read all the probe tests done on this site….not sure how helpful they can be in my son’s case. Sorry for typos.Theda2012-10-13 11:37:25

[hellbennt]

so glad the info here helps others!

I suppose you could ask for feeding therapy- they would help you w/ the gagging? also, do a search for gagging- go back one YEAR and older…

as for textures- take it slowly- experiment w/ thickness of purees – are you giving table foods? try giving chunks of things like sweet potatoes, bananas. see how he reacts- reaches for it? gets it into mouth? if he gags, it can be ‘ok’…will he eat puffs? cheerios? graham crackers?

[Anonymous]

Hi and welcome! You are an awesome mom to have pumped your milk for your little one all this time!!!! Does he drink any formula?

In my opinion, I probably wouldn’t do the probe yet. Because like you said, it probably wouldn’t really show much. If the doctor doesn’t want to up his dose then what does she suggest to do next? I would ask her what she thinks the probe might show? And what would she do accordingly?

It is obvious that your son is thriving so it seems like the concern is the inflammation, pain, vomiting, and gagging he has. Have you ever tried probiotics on your son? Probiotics (also known as gut flora) are the good bacteria that line, coat and protect the esophagus, stomach, and intestines. When probiotics (protective coating) are low or depleted then the acid/food that comes up rubs rights up next to the esophagus and causes inflammation and pain. By giving your little boy a probiotic supplement, it would help coat his esophagus and most likely help alleviate some of the inflammation and pain. It won’t stop the reflux though.

How is his sleeping? Does he sleep well or wake up a lot? And what about diet? Are there any foods that bother him more than others?

[Anonymous]

Thanks, ladies:). Yes…he does table foods. I mash everything up pretty well. He can eat cheerios, puffs, etc. His self- feeding skills are limited….I am telling you, this kid would not eat if he didn’t have to. Feeding therapy….I have had a few sessions, but they really dismiss me and tell me that he has age-appropriate skills, ugh!

Martha – thank you! No, he never had formula. A little before 1 he started cow’s milk in a cup….but he still gets a bottle of breast milk before nap and another before bed. He actually chugs these bottles now, so I plan on keeping up the breast milk in a bottle for awhile longer since he now enjoys it. Plus, when he has days where he eats so little, I know the breast milk is so good for him. Thank you for your advice, and information about the probiotics. I never have tried them because I did not know it could benefit him in other ways besides bowel issues (which he has no problems with). I read your blog…and I have contacted the company before about dosage. Do you do the probiotics along with the prevacid? I just eagerly anticipate a day where his belly does not require ANY medicines!!! He actually sleeps pretty well. He typically sleeps 11-12 hours at night, but usually wakes once. I nurse him during this time….partly because it is the only time he will ever let me nurse him, partly because itmis a good way to get more calories in him, and partly because if I let him cry, I am afraid he will vomit. So if I am to blame for these bad habits, so be it, He also takes a good 3 hour afternoon nap.

My daughter had horrible reflux, but she was a comfort eater. I will tell you, reflux is horrible. Gagging and vomitting is horrible. But having a baby tha refuses to eat is the pits. I realize I have been fortunate…my kid can eat, and with enough distraction, we usually can get enough in him. We have never had to worry about a feeding tube. I often would think a baby cries because he is tired, hungry, or needs a diaper changed. Feeding a baby should be bonding with him…it is heartbreaking when it can be so difficult.

I don’t want my baby to grow quickly, but at the same time, I won’t miss many parts of these days.

[Anonymous]

That is so neat that your little boy still gets your milk. I know that breast milk is best. To be honest, nursing in itself is not my favorite thing (don’t know why for sure but I think it has something to do with all the bad memories of trying to nurse my first baby when he screamed etc most of the time and I was existing with no sleep) but I did nurse Shiloh till she was 8 months old. I might have nursed her longer but we took my dad on a camping trip and while there he was injured and then in the hospital for a week and then passed away. So with all that stress, I quit nursing. 🙁

Can you tell me how that works with pumping? How often do you have to pump to get enough milk for your baby to strictly drink your milk? As often as the baby would nurse? That seems like a lot work and time consuming. But if I have an “aversion” to nursing with my next baby, maybe I should try just pumping because I really want my babies to have breast milk.

After I wrote all that I decided I should start a new discussion about it. Here is a link to it. https://www.infantreflux.org/forum/forum_posts.asp?TID=15455&PID=116002#116002 If you don’t mind, please answer over there. I’d love to get your advice.

Ok, back to reflux. That’s really neat that you get to nurse him at night and I am really glad that he sleeps so well.

I mentioned probiotics before but now I will mention enzymes. :)Digestive enzymes are what play a major role in breaking down our food. All foods contain enzymes in them to break down the food but when a food is cooked or processed, the enzymes are killed. But our pancreas also produces digestive enzymes and places them in our stomach to aid in breaking down our food. The bad problems is… that us Americans eat a diet of mostly cooked and processed foods. For many people, their pancreas gets tired and wore out from making so many digestive enzymes that it starts to slow in production. 

It is also possible that a baby can be born with a pancreas that doesn’t work well and this is often inherited.

When food enters the stomach, the stomach excretes a small amount of hydrochloric acid to activate the enzymes in it to start breaking down the food. If the food contains no enzymes and the pancreas produces very little then the only thing that the stomach knows to do it excrete more and more acid to try to activate enzymes. Because there is such an excess of stomach acid then it can be forced up into the esophagus causing heart burn or acid reflux. And it can also be forced down into the intestines causing many problems there too. This excess acid also kills probiotics. 

When there are no or little enzymes in our stomachs to break down our food we wind up with undigested food. This undigested food is them forced out of the stomach and into the intestines. While it is sitting in the stomach it can cause bloating. And beings it isn’t broken down properly then it can cause constipation for many but diarrhea for some. 

So as far as the probiotics helping with more that just bowel issues…. well if you add in enzymes then you will have a powerful combination that should be able to help with vomitting and possible help your child want to eat more and better. My oldest child loved (still does) to eat a ton. As a baby he sometimes drank 40 oz but was still labeled Failure to Thrive. I assume this was from all the barfing. 🙁

But I know that more often, babies struggle with not eating enough. Please take the time to read these stories. They are about babies with feeding problems that have found some help with probiotics and enzymes. http://help4acidreflux.wordpress.com/lorraines-story/ and http://help4acidreflux.wordpress.com/federicas-story/

Yes it is ok to give probiotics and enzymes while giving Prevacid. (I can’t speak for all company’s but I know that the company we use says that)

[Anonymous]

Today I received an email from a mom and it was titled “Reflux Gone thanks to your story”. My husband was standing near when I opened this email up and so I read it aloud to him. But I had to choke the last of it out because of the lump in my throat and the tears in my eyes. I have replied to this mom asking her permission to share her story but she hasn’t replies yet. So if she tells me that it is not ok then I will delete this post. But I doubt she will mind.

She also told me her journey through labor, delivery, and failure to nurse. I will not post that all here but just the part about reflux.

Hello,

I just wanted to thank you for the blog that you wrote about Reflux. My son suffered Silent reflux since the first day I started feeding.

……….

Since I had no experience with newborn I though it was normal for him to make that gulping sound when swallowing, and he was always arching his back, and moving a lot while feeding. Finally at week 3 he started to cry while feeding but he was still feeding, I notice that after feedings when laid down he was making this gulping sound followed by coughs and choking episodes with milk coming out of his nose. He had a lot of wet hiccups followed by painful face so i decided to make and appointment and the Dr told me everything was normal, that he had colic maybe but it will pass.

Since he was gaining weight just fine, it was hard for me to convince them that something was wrong. And since he was not vomiting reflux was quickly discarded. It was painful to watch how my 1 month old was in pain while eating. By 6 weeks,he was crying more and had a hoarse voice, asthma like breathing, wheezing and he was always congested.

I just knew something was wrong so I began doing a research and I came across a forum where it mentioned silent reflux, I them went to search for the symptoms and Leo had them all so I went back to the Dr with that information and finally he was diagnosed with silent reflux. He was put on Zantac twice per day but it did not make a difference so after a week I went back and got switched to Prilosec but it did not work either so Dr recommended adding cereal to his formula, so we did and that helped. We were fine for the following 2 weeks but then it was time for the 2 month check up and vaccines. He was checked and I was told he was growing normally and then was given the vaccines. A day after we were back with all the symptoms and not even the cereal will help, I emailed my Dr and told her that it was too much of a coincidence for the reflux to came back a day after vaccines and she insisted that there was no link between vaccines and reflux and that reflux usually gets worse between 2 and 4 months, she was ready to refer me to a GI specialist since she did not know what to do from there.

So I went back to doing research on Reflux and found that there are some complaints about HEP B vaccine causing reflux but that’s another story. Going back to the story, that’s where I came across your blog in a forum and I read your story. I really admire that you went through reflux for yrs with your kids and I am glad that I only went though it for 2 1/2 months thanks to you. So I denied the referral to the GI and order the Probiotics/Enzymes, I remember I started him on a thursday and friday, saturday and sunday were the worst days for my Leo but I had also read the side effects and detoxification process so I waited and on Monday we had a loving, happy little guy. I was still skeptical that he was going to regress but no. Every day is better and better, he now started to giggle and laugh and he started sleeping throughout the night. I has being a month from his recovery and I thinks it’s all thanks to the probiotics. He does not need cereal on his bottle anymore.

Thanks again for reading such a long email and you should be proud for helping mothers on their journey with reflux.

[Anonymous]

Thank you. As for anyone reading this who has had a child difficult to feed, when does it get easier? Is it easier when they can communicate? My son can be a good eater…but we often feed in front of cartoons to make him relaxed and to help him sit still long enough to get a good amount in before he loses interest? I feel I am a horrible mom for creating bad habits. 🙁

[hellbennt]

you are not alone- do a search going back one year & older- the search button is up in the upper right hand corner of this page…

it gets easier w/ therapy, or so I’ve heard- is your son getting feeding therapy? maybe try someone new if he is?

[Anonymous]

Don’t kick yourself! You are NOT a horrible mom!

[Anonymous]

Oh… by the way, I am not advocating that someone should cancel a GI appointment like this other mom did. I was just quoting what she wrote to me.

[Anonymous]

don’t discount a ph probe yet–what your doctors sees with the naked eye when doing a scope really means NOTHING—it is thw bipsy reslts that will tell the real story. My daughter had severe reflux and the GI came out and told me her scope looked good–but the ph probe and the biopsy results told a whole different story. She is one of the few children who needed to have a fundoplication. her esophagus was getting ulcerated at only 8 months old. she was also anemic and failure to thrive.

She had a hiatal hernia that did not show up during any of hr tests.

I also have severe reflux and a hiatal hernia. I sleep in a recliner more than in my bed–my husband just raised the head of our bed with blocks yesterday–we’ll see if I can sleep in bed now—-

I also possibly have eosinophilic esophagitis–this is something that can only be diagnosed with biospies. I have up to 16 eos per high powered lens—I have had to have my esophagus dilated 3 times.

I finally have an appt. scheduled with a GI next month—I am having trouble swallowing. Can’t tell you how many times my food has gotten stuck and I have stood over the sink trying to get it to go down or trying to puke it up—it is eally painful.

let us know the results of your son’s biopsies.

We learned a ton of information from my daughter’s ph probe.

[Anonymous]

I thought I might add that I have fought taking PPIs for years because I have always worried whethrt or not I would absorb all the nutrients I need from my food and whethe ror not my other medications would work—I discovered one of the meds I was taking would nor work properly when on a PPI.

After my daughter had her fundo, she hadn’t gained any weight 7 weeks post-op–surgeon wa talking feeding tube–GI said to give her a month—not sure how, but I got enought weight on her and avoided the feeding tube.

Later, she started to refuse to eat–or she would chew her food and spit it out. Breast feeding was the only way I could get her to eat. I won’t go into the whole story–but it turned out she had esophageal thrush. Once we treated her, she started eating, sleeping and gaining weight—and then she got sick, stopped gaining weight—and we had a feeding tube hanging over her head again—pediasure did wonders to avoid a feeding tube a second time. She continued to be failure to thribe as time went on—she had eveloped obstructive sleep apnea–she didn’t sleep well and children produce the most growth hormone in the deepest stage of sleep. she had her tonsils and adenoids removed (and an inguinal hernia repaired) a week after she turned two. She has done great ever since as far as eating and gaining weight—she never had any bad side effects from her fundo.

The surgeon tried to tell me 15 years ago that I needed to have surgery–but I didn’t want to—-stupid—I could have avoided a lot of pain and problems over the years if I had had the surgery back then.

I know they say that it can take up to 18 months to get over reflux—but with reflux still as bad as his is at 12 months old—I would have the ph probe done. I had no idea how bad my daughter’s eflux really was until after her probe and her scope and biopsy reports came back.

My reflux has twice caused shatzky’s rings in my esophagus–the 3rd scope showed the eosinophils. reflux is miserable.

[Anonymous]

Thank you or your advice, Christine. If his biopsies still come back good, you would still do the probe? From my understanding, the probe will tell us how many times he refluxes and the levels of acid in the episodes, correct? If he Is thriving, I assume he is not a candidate for surgery, So…I thought the only thing the ph probe would result in is more time on the high dose of ppi, which we plan to do anyway.

Theda2012-10-15 05:11:25

[Anonymous]

if you are already planning on giving him the high dose of the PPI and his biopsies come back showing only mild inflammation–then it would seem like the medication is doing it’s job. If that was the case, then I would think that you could probably skip the ph probe—you did say that he does fine on the meds, didn’t you, with the exception of texture issues?

[Author]

Posts