Need help dealing with a baby who has severe feeding aversion and reflux

Emily - posted on 10/22/2009 ( 9 moms have responded )

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Hi my name is Emily and my 8 month old is Maddox. He was born 2 months premature and stayed in the NICU for the first 3 months of his life, he was diagnosed with NEC art about 1 and a half months because of a diaper full of blood rather than poop and treated, by the time he came home we thought everything was fine (except for that nagging feeling in the back of my mind). The day after he came home he was right back in the hospital with blood in his diaper yet again! Come to find out it was a severe milk protein allergy and we had to change his formula yet again. He never had reflux until he was about 3 months old (which leads me to believe that this whole mess all stems from the regular milk formula that they were "supplementing" my breast milk with for extra calories) The drs had him on a massive dose of Prilosec and Reglan and the prilosec was upped quite often because he was so very uncomfortable and vomiting constantly. It got to the point that he seemed to understand that if he didnt eat he wouldnt vomit, so he stopped eating. After staying at 12 pounds 3 ounces for at least a month and a half the doctors called it "Severe Feeding Aversion". so basically my baby is to smart for his own good? He was put back into the hospital for the placement of an NG feeding tube. After what seems like a million tests and colonoscopy and endoscopy they are still saying that he has severe reflux and a feeding aversion. We started solids last month and he has been doing amazing with them, but still hates to drink. Other than the constant snot and cold caused by the NG tube, Maddox was gaining wieght again (and of course still vomiting, but getting what he needed) I was recently advised by his GI specialist to remove the tube for a day or two and see how he goes, he was amazing with his solids but still didnt drink enough, so I had to put the tube back in. Now he refuses everything! he doesnt want to eat anything with the stupid tube in his nose and down his throat, and i dont know what to do. The drs have talked about a surgery to put a feeding tube directly into his stomache, and another surgery to actually stpo the reflux. Is there anyone out there who has been through a similar situation?? Can you give me any tips?? Are these surgeries as scary as they sound to me?? Oh and after being very aggressive with the prilosec dose the drs have layed off nad havnt adjusted his dose since he was 12lbs 3oz and now he is over 16 lbs! he is arching constantly and screaming when he vomits and refusing food all together......I have to add that through this whole delema Maddox is the hapiest baby I have ever seen in my entire life! He barely ever cries (unless he is hurt or has gas) and smiles constantly, nobody can believe how happy he is (which is amazing and I love it) but he is constantly at odds with his own body. Please I hope someone can help me or give me some advice on how to get him to drink or tips on dealing with the insanity!

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Sarah - posted on 06/14/2010

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My advice would be to find out everything you possible can about the G tube surgery and the Fundo! For some kids the fundo is not very successful and can actually make things worse. I'm not trying to rain on your parade here, I just think it's important that you gather all the facts before agreeing to an invasive surgical procedure. www.infantrefluxdisease.com has a great message board for both tube feeders and fundo kids. They also have a wealth of information on Fundo in general. I am sorry to hear that your LO is struggling so badly with the food issue. Unfortunately, GERD often causes aversion. It sounds like your LO is quite a trooper, but is fighting a difficult battle. ((Hugs))

Candice - posted on 02/09/2010

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My son was 3 months old when he had the nissan and g tube surgery. That was the best thing that happened to him. His reflux was so bad that he would stop breathing. After he had surgery he got a little better but he had a list of problems. Now I have a 2 month old baby girl who is in the hospital now for this same problem I am praying that she can have the surgery today alone she stopped breathing twice. It is scary but he hardest part is learning how to work the feeding pump and that took me about two days to learn. The doctors will make sure you know how to care for him before you take him home.

Susan - posted on 12/15/2009

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Hi, my son Aaron also had a G-tube placement and Nissen Fundoplication. I've heard that if after having the nissen, if they vomit, it's not a good thing!! My son has not burped or vomited since he had the surgery when he was 1 month old. I have also heard that it can be reversed, I haven't looked into it so I don't know if it is exactly true. Obviously any kind of surgery for your child is scary, but if it helps, than it's worth all the scariness !

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Nazia - posted on 10/24/2014

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Hi Emily, I know this is a really old post. My son is in a similar situation as Maddox. Can you please tell me if you ever decided to go with the surgery or not. How is your son doing now? When and how did things get better for Maddox?

Dee - posted on 02/16/2014

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I know this is a very old post but I desperately need some help. My 10 month old daughter just got her ng-tube and is now going to the inpatient therapy. She hates the ng tube and is still projectile vomitinh. She refuses to eat or drink anything by mouth. We are so confused and don't know what to do. Doctors do not want to rush to a g tube but I think she will be more comfortable with it. She has a very sensitive gag reflex and is very sensitive to new tastes. Can someone give me some advice please?

Emily - posted on 12/20/2009

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Maddox's doctors are still very reluctant to take the steps to any kind of surgery. He is now inpatient at a local childrens hospital for "feeding rehab and therapy" the whole idea seems silly to me at the moment seeing that he eats less for them than he does for me and has lost about 4-6 ounces in the week that he has been there. We are willing to try anything they throw at us, so hopefully this works in time. We were told that he could be there anywhere from 4-12 weeks and this is only week 1, so I guess I hav eto give it a chance. He still has the NG tube and hates it, but they are trying to get rid of it, the whole thing is that he will eat if he feels good and he feels good when he is refluxing like crazy, which is most of the time! We'll see how this goes and hope for the best! thanks everyone

Katie - posted on 10/22/2009

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As far as the projectile vomit thats how my little man's was too. Now whether or not he'll be able to vomit after the surgery there is really no way to tell,some kids can others can't. My son has not vomited or even burped since his surgery. And if he ingests poison I would probably be able to suck it out through his g-tube. After he gets rid of his g-tube I'm not sure. Maybe get his stomach pumped? Hopefully l won't ever have to know that.

Emily - posted on 10/22/2009

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thanks Katie, maddox actually just had his reglan changed to a super low dose of arithromycin (sp) which is an antibiotic but helps with bowel motility. He doesnt usually have diarrhia, but the vomiting can be projectile. Someone told me that after he has the Nissen Fundoplication then he will NEVER be able to vomit, do you know if this is true? And if so, what about if they ingest poison??

Katie - posted on 10/22/2009

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Hi, I'm Katie. My son was admitted to the hospital at two weeks of age for severe dehydration. All due to his reflux. After a week and a half in ICU and after dozens of tests it was concluded that he needed to have a Nissen Fundoplication and G-tube insertion surgery. So at 4 weeks of age he had his surgery. My son would've died if they didn't intervene the way they did. It certainly is scary and I won't tell you not to be scared but this surgery saved my son. It is not without problems though. At 19 months Bobby is still on his feeding tube and we are still dealing with wretching and diarrhea on a regular basis. He still has to take prilosec twice a day and that does help. (I would be careful with reglan as after long term use it can cause some neurological problems but after stopping most go away). My son also has problems drinking. He will eat somethings but when it comes to liquid he panics. I suggest you look into getting a speech therapist as soon as possible. As far as the G-tube is concerned it is a bit of a pain but at least I don't have to worry about him not getting enough calories. Please feel free to contact me with any questions, we've been through the 'ringer' with my little one and I know how scary it can be.

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