Posted By Posting
Oct 12, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Oral aversion, please help
Hello! I am new to this forum and am so very grateful to have found it! My son, Alex, was dx with reflux at 3 weeks. He never spit up but had severe back arching and pulled away from the nipple. I could actually hear the reflux. He has been on Prilosec and is currently on Prevacid SoluTabs. I can still hear Alex reflux sometimes but it appears to be getting better (I hope). However, Alex was born in the 25th percentile but now has dropped to below 3rd, due to oral aversion (docs think). He is 1 yo and is only 17lbs 12oz. Since birth, while breastfeeding, Alex seemed to stay along his curve. However, he self-weaned at 3 months and it has been a daily struggle to get him to take the bottle and now eat solid foods. He gains only a couple of ounces each month. Our old GI doc didn't think anything was a problem as long as he was gaining weight (even if it was only ounces). We have recently moved to Washington and our new GI doc is more aggressive and A LOT more concerned about Alex's continued drop in his curve (even if he gains a couple of ounces). It is a daily struggle for me to get him to eat solids or take his bottle (he was on Enfamil Gentlease and am currently trying to get him to take Pediasure). He has never taken the bottle well, but in these past weeks has decreased from 18oz to 8 oz (maybe the switch from formula to pediasure??). He only wants to drink water. I have tried all sorts of milk in all sorts of sippy cups. Our GI doc thinks that Alex has oral aversion. I don't know much about oral aversion...what it is, how to help, what to do, etc. I have extreme "mom guilt" that I caused this. We are schedule to have an endoscopy in November to rule out celiac disease or other food allergies. Ped GI doc says that if he doesn't improve we are looking at a G tube due to failure to thrive. I am very stressed, desperate and scared about all of this. Please help! Any advice will be greatly appreciated! Thanks for reading this!
Oct 12, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Welcome to this site you will find it invaluable. I can't help you but there are many mom's here who are dealing with the same issues. I am certain you will get the help and support that you need.
Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
First off, I wouldn't hop right to a G tube. Even at your DS age I'd try an NG first to see how well he responds to it. Now, I wouldn't recommend doing the NG for very long, maybe a month because the NG can *cause* oral aversion.

Yes, at this point I would be very concerned since you have gone so long and have continued to drop in the %tiles. That is a sign that you are dealing with an oral aversion. Esp. since you sya he iwll dirnk water but nothing else. Jedd was exactly like that. He stillis to a point.

To b ehonest, I would do a tube. But then again, I'm partial to tubes since we have done one with Jedd since he was about 9weeks old and he is almost 2 years old now.

Oral aversions are VERY difficult to overcome. Are you working with Early Intervention???? They can come out an ddo a free eval and get you set up with either an OT or ST for feeding issues.They ahave done great with Jedd.

It is time for me to feed JEdd breakfast but post anyother ??? and I'll try to get back later.

Oh and real fast, soem times a tube can relaly take the pressure off of an already pressurized situtaion. Really, You don't have to fight anymore, it will jsut go into the tube. It will buy you lots of time as well.

Jedd had a very very bad oral aversion and was 100% tube fed by the time he was around 12-16 weeks old. He is now 100% oral allthough it is not your nomrla diet.

again, I'll try to pop back later. HUGS to you, it does get better!!!!

Oct 12, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I unfortunately don't know enough to give advice on oral adversion, but I DO KNOW THAT THIS IS NOT YOUR FAULT! You didn't cause anything - you just did what you thought was best for your child and you listened to your doctors, who are *supposed to* know more than us (ha!). I know all the moms on here have probably struggled with those feelings at one time or another but when it really comes down to it, every single one of us - including you - would do have have done whatever we thought was the best option at the time. Hugs to you!!
Oct 12, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I was pretty much gonna say what the last mom (Melissa) said. I am not experienced with oral aversion, but you should never feel like you caused any of this. As you read through the forum, you'll see that there's a large range of problems here. Some babies just have minor issues and others have very serious situations. All of us have to remember that we didn't cause it, it's just the hand that our poor little ones were dealt.

Hopefully now that you have an aggressive GI, you'll get some answers. Sounds like he's doing what's best. It could be that the pediasure isn't working but it's really hard to figure that out. How was he doing with the gentlease? Are you trying pediasure for calories? What I'm trying to say is I'd give him whichever one he'll take.

I'm so glad you found the site...you'll get some good advice. Hopefully Jessica will be back with you soon. She has a lot of experience in this dept! Hugs!

Oct 12, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Thanks!
Thank you to everyone who has posted. It has made me feel less lonely in this battle. I feel like the tough times are still ahead for us. Sigh. Alex is on Pediasure for the higher calories. However, he takes less of this than when he was on Gentlease (but the calories amount to the same). I can't tell if I just need to continue and he will get "used to the taste". Or if his decrease in amount is his way of downward spiraling? To Jessica: Thank you so much for even being on this site! It's a pleasure to meet another "oral aversion mommy"! With Alex, he will eat food, just not a large amount of it nor enough calories. He loves crackers and cheese puffs. Is this still oral aversion? I think I'm just in denial. Sigh. I have always had trouble with the bottle so I think he definitely has some element of it. I read your story and Jedd had a tube early, so it makes me wonder if we just have different starts to the same ending. We have been evaluated by two different feeding clinics and they all say Alex is able to swallow and eat, he just doesn't take enough. Unfortunately, I can't really force him to eat more. I think by my constant offering of food or the bottle this has not helped his aversion as well. I am adding butter to everything! Have you heard of a product called "Medium Chain Triglycerides"? It is over the counter and is suppose to help add calories to any food. I'm looking into it now. What types of calorie fortified foods are you feeding Jedd? I need some new ideas. :) The prospect of a G tube really scares me but it seems like Jedd has done really well on it. You both look so happy and Jedd is absolutely adorable! Thanks for your help!
Oct 13, 2008
catherinesmom
Catherine, 24-weeker, released from NICU on Zantac. Soon had NG tube due to FTT and GERD. Increasing oral defensiveness, now 100% tube fed after 4mths at home. Currently on breastmilk only, and still puking all the time. Mom just started Dr. Sears Elimination Diet.

Welcome!

My LO has oral aversion on top of GERD. The two things can feed one another and make things sooooo complicated.

In the battle to "get a kid to eat", the kid always wins. They have control over what goes in their mouth, and if you DO manage to get the nipple in and make them drink, WELL, they can always throw it back up! And having a tube feed can result in the same thing: "NO, don't want food right now, I'll just toss it back out! You can't make me!!"

Oral aversion is a self-protective behavior. The person, in this case, the infant, has learned to associate discomfort with the oral cavity (mouth, lips, nose, throat). Somehow, more pain associations have been established than pleasant ones.

In our case, I think most of the oral aversion started in the NICU with many procedures done to our LO's face: breathing tube, feeding tube, nasal suctioning. Then, when she came home, our efforts to get her to take a bottle caused more stress. We added an NG tube to the mix, and the unpleasant experience of having the NG removed or inserted has just added to the aversion.

Oral aversion, also called oral defensiveness, can also be self-perpetuating, just by itself. Because the oral cavity doesn't get as much stimulation in general, the nerves can start to get hypersensitive. Then when a normal sensation-causing event happens, such as a bottle nipple brushing the lips, it seems bigger and perhaps threatening to the infant. So, what happens? The infant starts to distrust the bottle, and the person offering the bottle.

I do find it interesting that Alex likes to drink water. That suggests to me that there's something about the formula that makes him uncomfortable. Food intolerance can also end up showing it's face as oral aversion.

I personally don't think it would have to be a full-blown allergy to cause discomfort. Take corn, for example. Some small children don't have a particular enzyme needed to digest it (or so I have read). What happens when you eat something that you have trouble digesting? Tummy hurts. Or perhaps loose stools. Or constipation. Discomfort. And I doubt that will show up through an endoscopy.

And, as a side note, I think someone here at PAGER wrote that there is lactose in the Prevacid SoluTabs. Probably one of the inactive ingredients. If Alex is lactose intolerant, that could be messing things up. Sometimes the meds themselves add to the problem.

Whether or not to pursue the G-tube? If I were in your shoes, I would be frightened by the thought of it. In fact, I AM frightened by the thought of it. We have had an NG for 4 months, and I know we will not be back to full oral feedings for a long time. We really need to move on to a G-tube.

The docs vary in their recommendations as to how long an NG should be used before moving to a G-tube. Some want to move on after a month. Others, three months. Just keep in mind, no matter what the docs say, the NG is supposed to be TEMPORARY. If the problem is going to take a good long time to remedy, the G-tube is better. It may truly be better to jump over the NG and move to the G-tube, since what you need is sustained weight gain, in addition to trying to discover what the underlying problem is.

In using the NG, I often come away from the insertion procedure shaking. I HATE how much it upsets my LO. On occasion, it goes well and she just shakes it all off and we move on quickly. Other times, it really seems to hurt her. Probably the tube irritates her esophagus, which is already tender from the GERD.

In the case of using a G-tube, at least the pain-causing factor is mostly confined to the initial surgery. It wouldn't be a repetitive thing like the NG insertion.

I would echo the advice to get help through the Early Intervention program. It has been SOOO helpful for us. Our feeding specialist helps us keep things in perspective, such as remembering that we are not at fault for the problem. And she gives us ideas on how to best use time and resources, as well as working directly with our LO to overcome the oral aversion.

Check with your
doctor first!