Friday, December 2, 2011

Oral aversion, and how we moved past it.

Huge disclaimer: I'm not an expert on oral aversion or feeding issues. Every situation is unique. But I do want to share our story and how I helped Juliana overcome her oral aversion.

Late one night I wrote a list of things I needed to work on with Juliana. One of the things on that list: get her to burp without vomiting. Juliana had become so sensitive that a burp, a cough, or too much crying could cause her to vomit. We had a lot of damage to undo before she could even begin to reacquire eating skills.

Juliana's oral aversion began when she had great difficulty eating due to digestive pain and possibly some reflux. It peaked when she began vomiting violently. In the aftermath I was left with a baby who would gag to the point of vomiting if something (bottle, pacifier) was put in her mouth. She was overly sensitive and did not associate eating with pleasure but rather with pain.

The first step was to get to the root of the problem, and in retrospect it took awhile to do that. We went from breast milk, to breast milk on a Total Elimination Diet, to Neocate (fail), to Elecare (pass). During all of this we also gave her Zegerid, a proton-pump inhibitor that seems to help most babies with reflux. It didn't really help Juliana - I think that her reflux was minimal to begin with and I later determined that she was also reacting to the drug.

I do believe that a g tube could have been entirely avoidable if we had just figured out the problem sooner. She would have needed an NG tube for awhile but I imagine that she would have been taking full feeds by the time she was a few months old. I hate that this was avoidable but I don't blame anyone for it. Even now, Juliana's digestion is still a bit of an enigma to me.

Our second step was to get rid of the NG tube. The NG tube is such a catch-22: it gives your kid a way to eat but it also increases their oral aversion so that they don't want to eat orally. I was so glad to be done with it.

After g tube placement I gave Juliana a few days off to recover and to become accustomed to the sensation of a tube-free nose and throat. Then we began working in earnest. Her GI issues had been taken care of but the lingering effects of the trauma were still very much in her memory. She would gag, usually out of the blue. The gagging would turn to retching which would turn to vomiting. She has always been very communicative and I found that if I spoke to her in a comforting but somewhat firm voice I was able to convince her not to vomit. When that failed, I would quickly empty her stomach before she had the chance to expel anything (a huge benefit of the g tube, at the time). I figured that dry heaving is less damaging to the psyche than actual vomiting. During this time of extreme sensitivity I gave her very small, frequent meals. I also stayed away from continuous feeds.

Things slowly began to improve over the course of the next month or so. After awhile I noticed that Juliana had a pattern where she was much more likely to gag between the hours of 2AM and 11AM. Why those hours - I have no idea. But I really began to focus my efforts to those time periods in order to ensure a gag-free day. She would usually start to gag at times when I was not holding her, and I would run to her as soon as I heard the tell-tale sounds. I also tried to encourage her to burp or cough without gagging/vomiting.

As we worked past these habitual behaviors I also began to slowly desensitize her mouth. Eventually I was able to put a bottle into her mouth without any trouble. Unfortunately, she lost her suckling reflex after the vomiting spells caused an oral shutdown. Not too long after this I began spoon feeding her broth and I was thrilled that she would allow me to feed her this way.

It seems so simple: remove offending food, heal GI tract, encourage baby to stop vomiting, desensitize mouth, work on oral skills. But it wasn't easy. It really has to be done with great sensitivity - for instance I would always work with her in a quiet place which was not always easy with a rambunctious older brother running around. And there have been many times when I feared that I pushed the envelope too far and that I might undo some of the progress that we made. Fortunately any setbacks we experienced were minor and quickly overcome.

We still have some work to do but we've come a long way. Today Juliana can drink with a straw and most of the time she loves eating solids. I am really excited by her progress!


11 comments:

  1. hooray! I agree with you entirely! You have done a great job helping her progress, and I have no doubt catching it at such an early age has helped tremendously. Any tips for a stubborn do-it-myself toddler? ;)

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  2. Yes we are very, very fortunate that we caught this at a young age. Ellie will get there! Of that I am sure.

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  3. I know this blog is a few years old, but I just wanted to ask - how long did it take before you got her taking oral feeds again? We are going through the exact same thing with my daughter right now, and are currently waiting on g-tube placement so we can free up her face and start working on the aversion. She's almost 5 months old (but was born 3 months early, so developmentally only almost 2 months), and we 'be been dealing with this problem since birth until I got fed up and demanded to see a GI specialist. The damage has been done... Her aversion is pretty extreme.

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    1. She had her g tube removed about six months after this! For us cleaning up her diet was really key to getting her off of tubes permanently.

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  4. I just posted a long comment but it didn't post. I am the mommy of twin baby girls who were born 2 months early, and spent 2 months in NICU. Long story short, we have had NG tubes since birth and the girls have developed a severe oral aversion. It breaks my heart and Daddy and I are desperate for help. I have nightmares of my babies eating from a tube forever! We've started feeding therapy but haven't seen any improvement since we've been home. They're on Prevacid for reflux, eat fortified breast milk, and I've cut out dairy from my diet in hopes to help upset tummies. They're very inconsistant, will take anywhere from the entire bottle (very rare) to nothing and anywhere in between. Please help, we don't know what to do help them. Any advice is greatly appreciated.

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  5. Like Sami, I had preemie twin girls, they were 3 months early. Our girls have been on NG tubes since birth and have just reached the 9 month mark (6 adjusted) The girls are both on Raninidine for reflux. We have been to a GI specialist who told us they are both "happy pukers" meaning they gain weight and arent showing any signs of any other issue besides not wanting to bottle. We have gotten a great OT who is helping us with feeding therapy. We have worked for about 2 months on desensitizing their mouth, which has gone well. They both put everything in their mouth all the time. They constantly chew on their hands and toys. They gag once in awhile, but I feel like it is more typical, like when they get their little hands back there too far, and now if they gag they don't vomit! We have kindof given up hope they will ever bottle, we are working with pureed foods, but are still just exploring. One of the twins will take several bites of oatmeal if she is in the mood...but my other daughter still has a prominent forward tongue thrust. Any mom to mom advise? Most of the time my husband and I stay pretty positive, but it feels like right when we think we are moving forward, we take two steps back.

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    1. Hi Abbie - sorry for taking a few days to reply. It sounds like your daughters are doing well! I think you may be right, and they might not ever take a bottle... at least that was my experience with my daughter. She weaned on to pureed foods and drinking through a straw. If they still suckle, maybe you'll have luck with the bottle... but they're getting older, so it doesn't seem so necessary. My daughter would start taking a bite here and there of pureed foods, and eventually she would do it consistently enough that I felt comfortable attempting a wean. I did a Graz style wean, only it was very gradual. Every day she would eat a little more and every day I would put a little less through the tube. I would often have to distract her while I fed her... for us this meant sitting on the couch, watching a TV. I think it's not too unusual to still have a tongue thrust at 6 months age... (?) so you might see change in that just given a little more time! Hang in there!

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  6. Hi there,
    I just wanted to say that your blog has given me hope that we will eventually overcome our daughter's aversion. You must be so proud of what you achieved with Juliana and it must have taken a lot of determination, patience and perseverance in overcoming it. It's nice to know that there are others out there who are experiencing or have experienced the same as me as I feel quite isolated and helpless sometimes.
    My daughter Katie's aversion started from the age of three weeks showing symptoms of what I now know to be cows milk allergy.
    This was only diagnosed after 5 hospital stays due to her stagnant weight gain and numerous visits to our doctor saying there was something wrong. She would scream when feeding, turn her head away from the bottle, would only feed well when sleeping and would vomit constantly and was was covered in excema and had diorrhea.
    When it was eventually diagnosed she was put into a hydrolysed formula but the stomach aches, refusal, sickness and diorrhea remained.
    In the end I managed to persuade her dietician in January that it went reflux and to try her on an amino acid based formula.
    To my horror although the physical symptoms disappeared she hated the stuff and was worse than ever and would fight me if I tried to put the bottle anywhere near her and would never display any signs of hunger. Even now she will not let me hold her in certain positions because she thinks I'm going to feed her.
    We saw a speech therapist twice who have now discharged us who eventually told us to give up bottle feeding and to put all milk down the tube whilst we concentrated on weaning her. I feel we could do with ongoing support from the speech therapists which is not forthcoming because she refuses to eat.
    She will mouth toys and her clothing and blankets but will not pick up finger food at all. She knows exactly what the difference is. In the past week I have managed to get a spoon in her mouth with some purée on but she seems unable to swallow it and gags. This relies heavily on distraction from the television and toys.
    We have been spoken to briefly about a g tube insertion instead of an ng tube but remain undecided as to whether to allow it.
    Sometimes I just feel desperate for her to eat it seems impossible but apart from that she is a normal happy baby.
    Your blog has really helped me see that there are others too who are in a similar situation and that she will eventually overcome it.
    Thank you xx

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    1. Hi! I'm so sorry to hear about all of your struggles. Keep looking at the dietary stuff - that is a big deal I think for most kids in this predicament. Ultimately the g tube was a good decision for us because she really needed a break from the NG tube. I just gave her a complete break from oral feedings for awhile and as backwards as it seems, I think that helped. Remember to always remain calm when feeding - babies are SMART and they pick up on your mood easily! Also, have you seen this post about play picnics: http://luciaeats.blogspot.com/2010/08/play-picnic.html Your daughter might be a little young for this, but I hope it gives you some ideas! Keep on keeping on - she will get there! It is a tough road.

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  7. Going through something similar. Can you email me your thoughts on the g tube? Pro and con? Smthompson6@gmail.com

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