Hello Everyone,
I have been meaning to write sooner, but we spent the last week in the hospital and I'm just getting home and settled again. Seth turned 6 months old today (April 16). It has been a loooooooonnng six months! But, we have made it so far!! Seth's problems with feeding started within his first month of life. He would cry when I breastfed him, arch his back, cough, choke, and scream. I thought I was always doing something wrong. Because it took him so long to eat and he ate so little at each feeding, I would basically end up feeding him all day. He was never on a schedule and was a TERRIBLE sleeper. His naps were 30 min. max.

Anyway, I breastfed him for 10 weeks, then switched to a bottle. Things were stable and he was gaining weight until he hit the 3 month mark. That is when he started refusing the bottle. Seth never threw up (I know I am blessed that he keeps what he eats down!), but he outright REFUSED to eat. He would go days on just a minimal amount of formula that I could feed him in his sleep. I started taking him to speech pathologists, pediatricians, allergists, ENT's and only the speech pathologist recognized the reflux. She was positive that Seth had a bad case of silent reflux. He always had the hiccups, choked and coughed when fed, had wet burps, red eyes, and lots of wheezing. Eventually, at 4 1/2 months Seth did a barium swallow study that showed reflux and something called laryngeal penetration (he was swallowing the formula down the wrong pipe and it was going to his lungs). They put him on Zantac--no go. Then prevacid. I learned how to feed him in his sleep to keep him out of the hospital. Our days consisted of me getting up with him at 6 am...driving him around in the car from 9-11 am to get him to sleep--then I would climb in the backseat and try to feed him and if he woke up during the feed, I had to start the car again and keep driving around to feed him. Once we got home. I basically turned around and would do it again for his next feeding. Seth couldn't take naps because he was too hungry to go to sleep and in too much pain. If he did fall asleep he would wake up screaming within 20 min. This was a vicious cycle that I was trying to keep up with until he was 5 1/2 months. Then he completely refused the bottle even in his sleep. The second I got it in his mouth he would wake up screaming. I think he was in so much pain that it hurt to swallow. After he lost 1 1/2 lbs. in 2 weeks, I got frantic and took him to the emergency room at Duke Hospital in North Carolina. The pediatric GI immediately admitted him. All the nurses were sure they could get him to eat. One by one they tried to no avail. He lost another 1/2 lb. and I was screaming at the doctors to do something. After more testing and confirming silent reflux, they put him on priolsec and put an NG tube in him. He has had the tube now for 2 weeks. I am so thankful that he is putting some weight back on, but I have no idea how I will ever get him to go off this tube. I HATE PUTTING THE TUBE IN HIM. I would rather shoot myself in the foot than shove that thing down his nose when he rips it out. I am having a hard time adjusting to this tube feed thing. It is so sad how little the doctors know about GERD and how to help these children. Seth is supposed to start Speech Therapy at Duke next week. Right now he is 100% tube fed. Any advice or suggestions from you seasoned reflux moms would be greatly appreciated. Thanks so much for listening. Kelly 8) 8)

Hi Kelly! I'm so sorry to hear what you've been going through!

I'm too tired to write much more right now b/c we only got 3 hours sleep again last night. Hopefully things will begin to improve for you and Seth soon.

Hi Kelly,
I am so very sorry your family is going thru all of this! You are right, it is so sad how little the Dr's seem to understand about GERD and how little they seem to able to help! How is Seth doing with the feeding tube in place? You and your family are in my thoughts.
Heidi

What a heart wrenching story! My heart goes out to you and your boy. From what I've read, it will take 6 to 8 weeks for the esophagus to heal once you start the reflux meds. Bad cases can take a bit longer. Little ones will continue to refuse to eat as long as they dont feel well and as long as it hurts them to eat. It may become easier for him to feed once the meds take his pain away so hang in there a bit! Reflux in itself is really painful and an inflamed esophagus from all the acid going up and down all the time must be excruciating! Wating makes it worse. So no wonder our little ones dont want to eat!

My boy at age 2 was so orally defensive no one could get anywhere near his mouth. We found that his reflux had been undertreated. Once he got on the proper dosage for his case, he ate a bit more and a bit better. There is hope! Hang in there!

Phyllis

I'm so sorry to hear about Seth.
I have been sleep feeding Trent since he was 3 weeks and he is now 1 year. Trent did not actively puke until he was about 3 months. His reflux was silent as well, but worsened with age and weight gain.
I understand how your days were. Mine are still about the same. I get up at 6 am and start rocking Trent back to sleep which takes about an hour. Then he takes another hour to drink the bottle. If any noise is made in the house or if I even move wrong, he wakes up and starts screaming and I have to rock him back to sleep again. After he is done, 2 hours later, it is time to do it all over again. It gets very old real quick. He is getting harder and harder to rock to sleep the older he gets because he fights so back. I have to put my leg over his, put his right arm behind my back and hold his other arm with my hand and try to get him to calm down.
My only thoughts about the NG tube is that it seems to make them even more orally defensive than before. We thought about the tube many times, and our GI doc recommended a peg so that we could still feed him by mouth during the day and do tube feeds at night.
My prayers are with you and I just hope you will be able to get him off of the tube as soon as possible.

Amy

I forgot to add that when Trent was on Zantac, it did not work either, and he did start totally refusing to eat, even in his sleep. He was put on Prevacid, and for the first week, I had to just syringe formula down him because he would not drink anything. After a week on Prevacid, he finally started eating again. Even now, if he doesn't get his Prevacid (like when I forgot it for two days on vacation), he will quit eating. So, it must work pretty well. I just wish there was some way they could have given the Prilosec about a week to work before inserting the tube.

Amy

Amy,

Your "rocking to sleep" efforts are almost identical to mine with Evan. I haven't tried using my leg yet, but thanks for the idea. I'll have to try it tonight. As for sleep feeding, Evan never would do that. It sure would have made it easier in the early days if he had, rather than having to wake a baby that could hardly be woken.

I just recently started using the leg recently because he was kicking the crap out of me!!!
Also, now when I put his right arm behind my back, he has started pinching the fat on the bottle of my arm. It hurts sooooo bad.
He can be a little devil at times! :twisted:

Amy

Hi Kelly,

Sorry you have had to go through so much with Seth! Sounds very much like our story, except that we have a puker. The Prilosec should start to help and heal things up within the next few weeks and hopefully he will want to start eating again. The problem is, as others mentioned, that NG tubes increase oral defensiveness and they can make reflux a little worse sometimes too by holding the LES open slightly all the time.

Janette, just a side note on the peg tube you mentioned...they make reflux worse and can cause reflux in people (not just kids) that did not have it prior to surgery by increasing the pressure within the stomach and on the LES. Most surgeons won't even do a g-tube without doing a fundo at the same time, even if the person didn't have reflux in the first place. And then you have wonderful doctors like Shae's who realize what a crappy solution the fundo is so they just do a j-tube instead. Don't get me wrong, the j-tube isn't the best option either b/c now she has to be on continuous feeds, which makes teaching about appetite almost impossible. I think it's just the better of the two bad options.

Sigh, it's just a vicious circle with no easy answers :( .