Trent was a full term 7lb 5 oz baby boy. He is now 1 year old.

When we brought Trent home from the hospital we noticed that he never acted hungry. Everytime I would try to feed him, he would arch his back and cry. He often grunted and turned red in the face as if he were in pain. He did not sleep well, and he ate very little.

His eating got progressively worse, sometimes taking an hour to drink 2 oz. I always noticed that he would eat better when sleeping, so I began sleep-feeding him. Every 3-4 hours, I would rock him to sleep and then feed him asleep.

Trent was a silent refluxer. For the first 3 months, I never saw him spit up or vomit. His upper GI was normal. Then after he turned 3 months, he started vomiting after every feed. It was very violent vomiting with gagging and choking. It would come out of his nose and I would have to suction him every time. I took him to the doctor and he was diagnosed with GERD and put on Zantac. No luck with Zantac so then he was swtiched to Prevacid, which worked really great for the vomiting.

Trent is a year old now and he has still never drank a bottle awake. I have been sleep feeding him since he was 3 weeks old. Also, the only way I can get him to eat solid food is by using distractions or my husband distracting him. He will still eat very little, and never acts hungry. At 9 months, he was taken off formula and put on Pediasure by his doctor because of FTT. He was also put on Periactin to stimulate appetite. He now weighs 21 pounds and is in the 20th percentile. The pediasure really packs on the pounds!. He still sleep feeds. He drinks about 20 oz a day and eats about 1 jar of stage 2 baby food at each meal. He will not eat textured foods, he gags and chokes. He also will not self feed. I have noticed that with each big weight gain, his reflux gets worse. He is now vomiting about 3 times a day on average. We are going to the doctor Thursday to get his Prevacid increased. He is currently taking 15mg a day. We have not had an endoscopy done on him yet to check for damage. I would be interested to hear from those whose kids have had it done and what it was like.
We still work with Trent daily to get him to self feed and hold a sippy cup. I'm afraid it is a long road ahead and it scares me a little. The recent weight gain being on the Pediasure is a big relief.
Thanks for listening.

Trentsmom

Hello and welcome! Trent sounds so very similar to Adam, my 3 year old. Its great that he was diagnosed at 1 yr - Adam's silent reflux wasnt diagnosed until he was 2! His reflux flares up whenever he gains weight, has a tooth coming in or if he isnt feeling well. He just started eating fork-mashed food at St Joseph's feeding center - he's in their day-treatment program. So at last, he's graduated from eating only puree.

One common problem with reflux kids is that their tongues are in a "protective posture". They form their tongues into a hill which prevents the spoon from going in very far. This impedes their oral-motor development, their ability to eat chunkier foods, their ability to chew and even sometimes their ability to speak.

The first step in his feeding therapy was to get him to open his mouth nice and wide for the spoon. They did this with a Barney video - each time he opened his mouth wide for the spoon, he got to see the video for 20 seconds. He had 4 feeding sessions that day, each lasting 30 minutes. By the end of the day, he was opening big for each spoonful.

Next was to train his tongue not to go into the protective posture. Each time he opened his mouth for the spoon, they place the spoon on the very top of the hill that he made with his tongue and pushed it down so that it formed a valley. This was a major step so we had about a week of feeding sessions doing this (with the video or toys as a reward for opening his mouth etc) Once it became automatic for Adam to open his mouth and make a valley with his tongue, he advanced to the next step - lateral movement of his tongue.

Lateral (side-to-side) movement is important because you can't eat textured foods if you cant move your tongue from side to side. For the feeding sessions, they would get him to open wide, then press his tongue down and slide the spoon all the way over to the side and then slide the spoon out. First the right side and then the left. This was really hard for Adam to learn but he's got it down now.

Once that became easier for him, he started fork-mashed foods. Its still alot of work for him, but he isnt gagging or choking anymore. Unless he's sick. An important part of this feeding camp is that the reflux is under control - they can't advance if they dont feel well and if the reflux isnt under good control.

So these steps have really worked wonders for Adam. He's even eating some chewable foods now! And his speech has improved dramatically!

I hope some of this has helped! and welcome, its nice to meet you and trent!

Phyllis

I've heard good things about St. Josephs. Trent is currently working with an OT who is retired from St. Josephs in New Jersey and is now living in Savannah. He is making good but slow progress.

Amy

Wow, Amy you've had a long road!

Curious as to how the pediasure worked out. Shae's GI wants to try switching her to it and I am terrified she's going to puke non-stop.

Glad to hear you got some Periactin I've heard good things about that stuff!

Hi Roni,

The Pediasure has worked great for Trent. He liked the taste of it much better than formula, and he seemed to throw up much less after he started on it. It is quite a bit thicker than formula and I think that helps. It also has 30 calories per oz so after starting Trent on it, he gained 4 lbs in 2 months!!!!! It has been a life saver for us and has saved him from the tube. His ped GI wanted to put a peg tube in but gave us one last chance with the Pediasure. After the big weight gain, he no longer felt a need for the tube and I was relieved.
It is a little more expensive than his formula, but Walmart makes the Parent's choice brand which is exactly the same, but much cheaper.
Hope this helps!!!

Amy

Hi Roni,

Unfortunately, the Pediasure did not work well for Evan. I know that it's supposed to help these kids to have thickened things, but that sure doesn't work for Evan. He's opposite to many of the so-called rules of reflux. He is fed orally, though, so hopefully it'll work better for Shae.

No, I am not expecting her to do well, I can't get her cals per oz over 22 with the Neocate without her gagging and puking non-stop so expect her to be horrible on pediasure at 30 cals/oz...that's why we've never tried it before...just b/c I knew how horrible she does on higher calories. At this point and her lack of growth though we need to try something.

We don't need to worry about the taste since it will go in her tube but it would be nice if she liked it maybe she'd take it orally someday... :) .

Roni,

Have you tried Shae on any calorie boosting powders such as Caloreen? Maybe a calorie powder would work. Caloreen is glucose-based and just gets mixed in the liquid they take, without making it bulkier.

The calorie boosting powders do work good. Trent was on Polycose and Moducal which are both glucose polymers. The Polycose dissolved much better than the moducal.

Amy

Caloreen disolves well too.

Ya, we've tried that stype of stuff b/f...makes her puke more....she just can't seem to handle the extra calories at all.

Roni, my daughter is on Neocate too. She is taking in 27 cals per oz. Our doctor wanted us to use Polycase, but she puked it too. So now he has us adding 1/2 tsp of corn oil instead and she is taking it fine. Is Shae also protein intolerant or do all relux kids eat Neocate :?:

What is Neocate? (My refluxer isn't on it.)

Shae couldn't handle the 27 cals/oz at all, that's why she's only on 22. We also tried adding oil to her formula....no go. She's not really protein intolerant just calorie intolerant (who knew there was even such thing :roll: ), and the Neocate happens to be what is working best at this point. No, not all refluxers need Neocate, some do b/c of milk allergies etc but everyone is different.

Neocate is what's called an amino acid based formula, meaning it's completely broken down. You've heard the Good Start commercials about the 'comfort proteins', and how they are partly broken down making it easier for baby to digest. Well, Neocate takes that to the next level, it's basically completely digested already, the proteins are completely broken down the basic elements of food (amino acids), the body then need simply absorb the formula without the work of digesting it.

Hey Amy,
I am so happy to have met you on this website. However, I wish it was under better conditions! Until I read your story, I had never heard of another mother putting their child to sleep to feed them. I totally understand what you were talking about, because Seth (6 mo. old) and I have been doing that same song and dance every time he needs to eat a bottle. IT is so sad to have to put your child to sleep to feed them! I have lots of questions for you since you have been doing this longer than I have. First, do you ever leave the house with Trent? How do you get anything done during the day?? Do you get anything done except for feeding Trent? Do you have help?

The reason I ask these questions is because when I feed Seth in his sleep, it consumes my entire day. I haven't found a way to even go grocery shopping with him unless I just plan on him not eating that afternoon. Anything and everything disrupts his schedule. I haven't been to a mall since he was 2 weeks old. I NEVER get anything done except for absolute necessities (such as paying bills and laundry) unless someone comes to help me --which is hardly ever! Anyway, I'm just kind of wondering what your day schedule looks like---if you have one---and how it changed over his first year of life.

Also, you mentioned a question about an endoscopy in your first entry. Seth had one done. It really wasn't a big deal. In and out of Duke Hospital within 3 hrs. The procedure itself was only 30 min. His throat hurt for about 3 hrs. afterwards and he didn't eat much that day (shock!), but other than that, it wasn't so bad and it put my mind at ease to know that he didn't have much damage. (The medicine works!). Anyway, I'm anxious to hear from you. Thanks for sharing your story and advice with me.

Hi Kelly

It's hard work...I know.

First of all, my schedule is somewhat different now than what it was when Trent was that age. It does get better. When Trent was 6 months, he had no schedule. It would take him up to 2 hours to eat, and I pretty much sat in the rocker all day rocking and feeding. But, now that he doesn't have to have as much formula as he used to, it has gotten better, and he eats faster than he did.

Here is my schedule:

Trent gets up at 6:30, and I rock him back to sleep and feed him a bottle.
7:30 I wake Abby (5) up and feed them both breakfast
8:00 I take Abby to school
10:00-11:00 Rock Trent to sleep and feed bottle
12:00-12:30- Lunch
2:00-3:00- Feed bottle again
3:30 Pick up Abby from school
5:00-6:00 Feed bottle again
6:30 Supper
9:00 Bedtime bottle

Trent has gotten so acustomed to sleep feeding, that now he will not drink a bottle awake at all. When he gets hungry, he immediately gets sleepy, so it doesn't take near as long as it used to. I can normally rock him to sleep within 15 min and then he takes about 10 min drinking the bottle. So about 30 min max.
I have just started being able to go out during the day about 2 months ago, but not for very long. If I do go, it is normally between 10:30 and 12:00 or after I pick up Abby about 3:30 until 5:00. If I need to go grocery shopping, I wait until hubby gets home or do it on Saturday. On the weekends, I have a break between about 2:30 and 5:00 since I don't have to pick Abby up from school.
Trent will only drink 4 oz at a time, and I try to get 20oz in him a day. So I have to fit in 5 bottles. I'm about to drop the 10:00 bottle and just go to 4 bottles and see how he does. He used to get constipated if he got less than about 18 oz a day, so I will see how it goes.

I totally understand what you are going through. When Trent was that age, I was trying to get 7 - 4 oz bottles a day for a total of 28oz. So, I was having to feed every 2 hours, and it took 2 hours to feed!!!!!

It will get better as his requirements decrease, but the thing that will not get better unfortunately is the drinking the bottle. I always hoped that one day Trent would just start drinking awake, but it hasn't happened, and his OT says I have actually made it worse by sleep feeding. Now, he associates drinking with sleeping instead of sucking a bottle. It is basically a mal-learned behaviour that is very hard to change. I haven't been able to train him to a cup because he will not drink awake. So, now I have the issue of him possibly getting bottle mouth because of drinking a bottle for so long. We'll see.

Good luck with everything. Maybe the next time I'm up there in NC I can meet you. I have a sister that lives in Raleigh, one in Asheville, one in Wilson, and the rest are in Goldsboro (I have 6 sisters).

It WILL get better, I promise. What we are working on now, is changing Trents behaviour. We have him on Pediasure which is making him gain weight rapidly. He is now at 22 lbs. As soon as he hits 25 lbs, we are going to start a behaviour modification program which is pretty much starving him. We will not feed him unless he is awake. We know he may lose weight during this process which is why we are trying to get him pretty plump first.

Also, Trent is on Periactin, which makes him hungry. It also makes him sleepy. I give that to him twice a day, and about 30 min after getting it, he is very sleepy. That helps with rocking him to sleep.

Amy

HELLO:

I WAS READING YOUR STORY AND SEE THAT YOU LIVE IN GA. I AM THINKING ABOUT MOVING DOWN THERE FROM BOSTON BUT MY CONCERN IS THE DOCTORS, HOW ARE THEY? I LOVE MY SON DOCTORS RIGHT NOW THEY LISTEN AND BELIEVE WHAT I SAY AND DON'T JUST BLOW IT OFF BY SAYING "DON'T WOORY HE'LL EAT WHEN HE'S READY".
JUST LOOKING FOR SOME INFO IF YOU THINK YOU CAN HELP

THANKS
KELLIE