I have a three boys and my baby, Anthony, has GERD and delayed gastric emptying, I am so frustrated with Doctors I could cry. I was not diagnosed until around 10 months. He had and still has silent reflux. We have been on Zantac, Previcid and Reglan. He is also on Murilax for a laxative.

My child is 22 months old weighs 23 pounds and will not eat anything but creamy foods, ex. yogrut, icecream or pudding. Also has a hypersensitive gag issue. Also still on formula for nutrition.

The only real thing that has worked is taking him to a chiropractor(sp).

I do not know where to turn. I hope you all accept my in your message board. I need so help.

Our next step is to do a scope, has anyone else had this. I am scared it will set his eating back a couple of days.

Hi Sharon and welcome! Your story sounds similar to so many of ours. My son Evan, age 24 months, has terrible gag isssues with his reflux too.

It's interesting that you mentioned chiropractic aid. Many of us have questioned whether or not a chiropractor could help our refluxers. Could you please tell us what kinds of adjustments he/she did and how it helped?

Thanks in advance.

Hi Sharon and welcome!

Yes, your story is so similar to lots of the parents here! My boy is 3 yrs old, silent reflux (undiagnosed until he was 2) delayed gastric emptying (undiagnosed till he was 2 1/2), speech delay, orally defensive, weak trunk muscles. He weighs 25 pounds at 3 yrs old.

He ate only baby food until we went to St Josephs "feeding camp", It was an intensive month long program and he finally graduated to fork mashed foods and is just starting to chew. But for the first 3 years of his life, it was only baby food.

The docs at the feeding center told us that a child wont be able to advance eating skills until all of their medical issues are under control. Reflux is painful and they associate eating with pain. Delayed gastric emptying makes them feel full all the time so they dont know what hunger is. So the first step is to get the medical issues better before trying to advance eating skills.

The sensitive gag response could be that he's using his tongue to block the spoon. They called it a "defensive posture" at the feeding center. The little ones dont want to eat because they know it will cause them pain so they raise their tongue to block the spoon from going in very far. They never learn how to use their tongue to get the food to go down properly so they easily gag when the food ends up unexpectedly in their throat. This is one possibility for the gagging, I'm sure there are other reasons for it but thats what my boy was doing.

Adam never had a scope done so I cant offer any advice about that. But if its not the 24 hour test, I know they use light sedation. So if thats the case, it shouldnt affect his eating much.

When Adam wasnt eating enough, I did some things to get extra calories in him. I made all of his milk "double" - I added powdered milk to regular milk. It doesnt change the taste so the extra calories and protein were good for him. I made instant pudding with double milk and some extra virgin olive oil. Also used benecalorie in things like applesauce. The extra oil and the benecalorie didnt help his delayed gastric emptying - so when we were using these things, we needed to up his dose of milk of magnesia.

Anyway, I hope this helps and welcome!

Phyllis

Welcome Sharon!

You are not alone, we're all here to help!

Yes, we've had a couple scope tests, most recently last week. Chances are it will set his eating back a little bit, they tend to have sore throats afterwards.

Thanks for joining us! I look forward to getting to know you and Anthony.

I love your son's name, Sharon! (Anthony is Evan's middle name, so I guess I'm a little biased...)

Evan's gagging isn't just caused by the spoon going in and hitting his defensive tongue. On a really bad reflux day, he'll gag from his bottle going in, or even just from looking at his bottle or his spoon. Are any of your refluxers so sensitive that they'll gag at the sight of their bottle/cup or spoon?

Hi and welcome Sharon!

My son Trent has been on Pediasure for the last 3 months and has gained 5 lbs since starting on it. I don't know if you have tried it or not, but it has worked well with us.

Janette, Trent will also gag just by looking at his bottle. He will gag sometimes when I try to stick the nipple in. He will also gag sometimes even when I put his pacifier in his mouth. It all depends on how his reflux is doing that day. That is normally how I can tell if he is having a good day or a bad day.

Amy

Thank you for taking the time to respond to my post, I hope we can help eachother through these difficult times with our children.

To get back to a couple of questions/suggestions:

I was first skeptical of chiropractic aid for Anthony. He is my neighbor and wanted to help him. At first I would only let him adjust his spine and lower hips. Now he will adust his neck and shoulders. Does it work, for Anthony I think it does. He said it would take seven or eight weeks to see a difference at at six weeks we saw an improvement. The problem is, that Dr. Joe does this as a favor and cannot always fit us in, so if we miss a day or do not go for a week, we are kind of back to square one. I think for babies they react very quickly to the treatment, but they can also fall back if the ajustments are not on a consisted basis. My pediatrician and GI specialist gave the the okay, because as the GI put it modern medicine does not know how to help Anthony.

Dr. Joe also put him on Okra, which comes in capsules, so i open them and mix it in his yogrut. As with most chiropractors he is not into using medicine to help people especially babies. So the Okra should do the same thing as Reglan. I have not seen a big diffrence in its performance compared to Reglan, but Okra does not make Anthony drowsy the way Reglan does.

Phyllis, I am so glad that St Joseph's helped you, we took Anthony to the Childrens Hospital of Philadelphia's Seashore House Feeding Center, and were turned away, because they told me I was the problem. I was told I react to quickly to his throwing up and give up to easily in feeding him. I was told that they could not help him, because they did not know what to do for him. After I saw the GI, he told my Anthony's problem is not that he wont eat but he cant eat. So I would love to go to another feeding center, the problem is that my primary will not send me because of my bad expreinece. She wants me to try an Early intervention program. They come next month to evaluate Anthony.

I also have the same problem with him gagging on the nipple to his bottle. But after he gains control he will drink his bottle.

I did try Pediasure, unfortunately he was allergic to something in it and now I feed him Nutren about 3 oz and 5 oz of formula.

Does anyone think maybe Anthony is missing an ensyme or something, that his stomach cannot empty. Just a thought.

So I hope everyone had a good day. I hope to hear from you soon.

Hi Sharon,
I was just reading what you wrote about CHOP and the Seashore House. I could SCREAM! My daughter has been seen there since last July and I can't stand them!!! :evil: They actually told me the exact opposite of what they told you-"if she cries, stop feeding her, let her be in control." We've actually permanently switched to a new GI and feeding team this past month after searching around for a while. I found them very unsupportive and uncaring. I could spend days complaining but I don't want to bore everyone.
I'm guessing you live near Philadelphia? If so, I'd love to talk w/ you a little bit more about different places we've been w/ Maeve. We are very happy with our new doctors at Penn State Hershey Medical Center. Maeve's actually eating a little bit of baby food 3x a day after only 1 visit w/ them!
I look forward to getting to know you better!

Sharon,

You mentioned that Anthony will only eat creamy foods. His story, age and weight sound a lot like that of my son Evan. We were finally able to add toddler entrees (from jars) to his diet. If you haven't already done so, try him on them. You could start by chopping up the small pieces of pasta that are in them, and by making sure that they get into the sides of his mouth. We're finding that that helps Evan not to vomit as easily or as often. At 24 months, Evan is now (FINALLY!) begging for our food instead of the toddler stuff. We still tend to give him a meal of toddler entrees, but then finish with some of our food chopped up small.

Janette,

We have tried your suggestion, regarding pasta. Coming from an Italian family, pasta is is in my diet too much. So I have tried all kinds of pasta, mushy or very soft. He will always gag and usually throws up. My sister gave me some toddler table food dinners to try but he refused. I am telling you if Anthony gets 400-500 calories in a day I am lucky. Sometimes I just think everything I am doing is wrong. I try to feed him solids he pushes them away, I try pudding, yogrut and stage one babyfood he eats it but sometimes not the whole thing. The only thing he really wants is his bottle. I think Anthony knows the bottle is safe. Today he did eat part of a chocolate chip cookie at the store, but in the car home it all came up. Acutally I was on the cell phone with my sister-in-law, and she could not believe how calm I was. I told her this is my life, cleaning up throw up. Isn't that terrible.

But thank you for your suggestion, if you have any more please let me know.

Maybe you have tried different techinques that I don't know about.

Hi Sharon,

My goodness, it really is awful isnt it, how our lives revolve around counting calories, cleaning vomit ("I wonder how many calories he vomited that time?!") and trying to prevent our little ones from starving themselves. Its great to come together here, where its not the strangest thing and we can all relate!

I dont know about getting Anthony to eat table foods but when we were going thru "feeding camp" the main thing to get Adam to eat better was to put just a tiny, tiny amount of food on his spoon. And to give him a 15 second break between spoonfuls. I was surprised at how much this helped after 3 or 4 days.

As far as getting more calories in him, maybe give Benecalorie a try. Its a liquid "medical food" that comes in little 1.5 ounce cups and you mix it in to yogurt, pudding etc. You could mix it in to his bottle too but it will make it thicker, like a milkshake. It has no taste, it looks kind of like cornstarch &water and its a whopping 330 calories in 1.5 oz! I order it online thru walgreens but if you contact Novartis, the company, they send a free trial sample. Its worth a try!

Keep us posted!

Sharon,

I find that the toddler dinners and pasta are often too chunky and, therefore, cause vomiting. Try the toddler jars instead. They're pretty liquidy and only have a few chunks. You can always cut the chunks up to begin with. Also Nestle has a powder called Caloreen, which I just stir into Evan's food and add to his bottles. It's glucose based and mixes in quite well. We order it through a specialty foods store at the children's hospital.

Sorry it took me so long to write back, my 10 year old was sick last week and we took advantage of the nice weather and mulched and cleaned up the flower beds. So I have not been online in a few days.

We tried the toddler baby food and he ate some maybe a quarter after gagging a little bit. We have found that if we make him drink water after each mouthful it is a little better.

I have never heard of Benecalorie or Caloreen, but have been using Nutren in his bottle which seems to help, its sweet vanilla tasting so I think he enjoys it.

One other thing that has helped, I think is that I took him of Reglan. We hadhim on it earlier this year and stopped. After a break I put him back on and he was so tired and cranky. So I figured it was the medicine. I just feel he already takes Zantac and Periactin(sp), and of course one of the side affects is nasua. I just thought it was overkill.

Has anyone ever stopped medicine and if you did did you see a big difference. Because I feel he does the same on or off the Reglan

Thanks

Sharon

Hi Sharon,

We find that frequent sips of water during a meal really help Evan to wash things down. I haven't really tried having him off meds though. He's only "off" when he's really "refluxing" and can't keep anything down.

Hi Sharon,
I am new to the message boards too, and I have a 6 mo. old with GERD. I have found these message boards to be my life line. I don't know how I made it through the day before I found them! I don't have a lot of advice because we haven't put Seth on a ton of meds--other than Zantac, Prevacid, and Prilosec. But, I have found one homeopathic treatment that has DEFININTELY helped him digest his food and go to the bathroom regularly---probionic. It has lots of good bacteria that helps babies, children, and adults digest and breakdown the food and make the bacterial balance in the intestines normal. You can order a children's bottle of priobionic at www.haacres.com. IT is an odorless, and doesn't reallly have a taste. It's just a thought. Thank you for sharing your story. By now you know that you certainly are not alone. Oh---about the tests, has your child had any done yet?

Kelly,

I tried the website you mentioned, but it doesn't work. I also tried it with just one "a"...still no luck. Could you check it and get back to us? I'll definitely want to see what they have to offer, if it's available in Canada, and what it would cost us here?

Thanks!

Hi Janette.
Sorry to butt into the conversation, but I have tried probionic as well after Trent was on antibiotics, and did great at stopping the diharrea he had from them. I ordered them from this website http://www.enrichinglives.com/childrens_products.htm
If that link doesn't work, the main site is www.enrichinglives.com, and you can scroll down and click on "children's products". They do service Canada as well as the states.

Amy

Thanks, Amy! I'll have to try it later this evening when I have more time.

Sorry,
The website is www.hacres.com Also, try www.enrich.com Seth is actually taking priobionic from a company called Unicity. You can order it from the enrich website. He takes 1/2 tsp. per day in his bottle. It has billions of live good bacteria in it. It comes in silver packets that you keep refrigerated. I open one packet and dump 1/2 tsp. in his bottle per day. The packet lasts for like a week because it is an adult dose packet. Hope this helps. Kelly

Hey everyone,

I have not tried probianic, actually never heard of it, but I will talk to my chiropractor about it. He told me to get Kidzyme at the Organic food store. It is a digestive enzyme, I have been putting it in his yogrut twice a day. Tried it in his bottle but that was a no go. He does not like when you put things in his bottle.

As for tests we have done an upper GI with lower bowels, a milkscan and and xrays of his stomach and adnoids. My older son had his adnoids and toncills out almost two years ago. The nurse practitioner at the GI said not to do a scope because he can tolerate some solids, a cookie or lightly toasted bread. I am fighting with them to have the test, because my older son also had gagging problems, not to Anthony's extreme, so when they did his surgery the stretched the membranes of his esophagas. THe ENT thought it was too narrow. I told the GI this but still no scope.

He has not been eating very well lately, maybe 500-600 calories a day. I do not know why he sleeps at night, I would be starving.

Is this how many calories your children get, my doctor said 800-1000 was normal.

Also, questions, is anyone concerned about your child's teeth. I think with all the vomit and acid that is in his stomach his teeth are in danger, kind of like a bulimic. Sorry for some of the spelling, long day.


Sharon

So glad to hear that your little guy is still on the bottle too, Sharon. Sometimes I feel like Evan is the only kid around who could wean himself off of it at age 1! (He's finally starting to take some soy milk from a sippy cup this week-end. Juice has never been a problem.) So it goes with reflux, I guess.

I haven't actually counted calories for Evan. It hasn't been suggested by his dietician or any of his specialists to date. I'm just really excited when he eats as much as I know a healthy child his age should (even if part of it is purees with chunks!) and actually keeps all of it down!

Even though we brush his teeth twice a day, I've been concerned about Evan's teeth as well. I had the dentist check them when I was last in for my own check up. I think he thought I was a bit daffy to even think of having Evan's teeth checked before he turns 3. Oh well!...At least I know with certainty that the acid hasn't caused any damage so far.

I don't know enough about the scope to answer anything. That's where one of the other moms (or dad) will have to jump in.

Lastly, what is the milkscan test?

Janette,

A milkscan was a test we did at Childrens Hopsital of Phila. I tested for reflux and how his stomach emptied. He drank a bariam liquid in his bottle and laid on a table, they actually duct taped him to the table so he would not move. I gave him his blanky and put in baby einstien and he fell asleep, thankfully. In the one hour long test they recorded 8 instances of reflux and found his stomach only emptied 23%, normal is 60%. So they diagnosed him with delayed gastric emptying, and put him on reglin and zantac for reflux.

Since then I he has gotten better with medication.

Sharon.

Hi Sharon-

I was reading abouit Anthony and he sounds so like me 4 year old son Marcus. We have been watching his wieght all the time and he is also on prevaicd and periactin. he was just put on Periactin a couple of months ago but he seems to be doing pretty good on it but as you know it is still a roller coaster!!!! Has Anthony been to any of the feeding hospitals and if so do you think it has been helpful and if so where are they!!! We live in Mass and I love my Marcus's GI doctor but I am looking for an answer to why this is happening and why he will not eat and I keep getting t he same answers I DON'T KNOW!!!
Marcus has had a fund at 2 years old and had the g-tube put in at the same time and he still needs the tube and does not eat he may take a nibble of food here and there but that's it and the doctors do not know why he will not eat! The good thing I have to say is that with the Periactin he is nibbleing more and now SOMETIMES may eat a cracker and suck the juice out of an Orange (which he refluxs with) but that is what he asks for and if he asks for food more matter what it is I will give him if he'll eat! but he seems to want the food with acid. If you could let me know what has been working with you.
I hope Anthony is doing good and gaining weight.

Thanks
Kellie