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Discussion Starter · #1 ·
Hello,<br>
My name is Kelley--I'm new here <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">. My sweet baby girl, Charlotte, is a 7 month old preemie who has oral aversion (oh, and a feeding tube, cardiac, and pulmonary problems--requires oxygen). I was looking to get some advice from other mommies who have experienced this situation. We are currently waiting to receive services from a speech therapist, but I was wondering if anyone had any tips for working with her in the meantime. She can't nurse as she aspirates thin liquids so I can no longer put her to breast. I do give her breast milk that I've pumped but I have to thicken it with a special gel. She won't take a bottle anymore though. We also try stage 2 baby foods, but she just gags and chokes---crying all the while<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">. I'm really not sure where to go from here........
 

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First thing -- here's a <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> for you!<br><br>
Has your baby been referred to Early Intervention? They can come and provide OT (occupational therapy), which can work on oral aversion issues. There's also feeding specialists -- your local Children's Hospital probably has a clinic -- that have lots of experience dealing with babies with oral aversion.<br><br>
Dd had pretty severe oral aversion as an infant/toddler due to medical issues. Some of the things that helped were lots of oral exploration without the "threat" of food -- playing with a cloth around her mouth, massaging her cheeks and chin, and we progressed to using a Nuk toothbrush on her gums (this was after a lot of other therapy), and letting her just mouth on a baby spoon, then later dipping the spoon in baby food and letting her lick at it without any expectations of putting it into her mouth. A good therapist should have lots of suggestions to help.
 

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Thanks for taking the time to reply! We have been referred to early intervention--they are coming to evaluate DD on Dec. 14th. We worked w/ a speech therapist in the NICU (she was there for almost 7 months), but after her recent G-tube surgery (and having to be on the vent), she totally regressed and will only stick her own fingers or fabrics against/in her mouth. I like the idea of just letting her play with a spoon (she is finally learning to grasps things)--maybe I should back off the food and just let her mouth the spoon. THANK YOU!!
 

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Oh that's so familiar. We are in the same boat except we're nearing 2yrs old (Feb 27th) and we don't eat anything by mouth anymore thanks to her oral aversion and now a complete loss of knowledge about how you actually eat. She stopped eating about 13mos ago.<br><br>
My first advice is definitely stop stage 2 foods. If she's 7mos old that means adjusted she's even younger and by her reaction clearly the stage 2 isn't working out. I would go to stage 1 and see how that works. Focus more on tastes and creating pleasurable situations to experience food (let her play in it and get messy). Don't worry about how much she's taking in (easier said then done I know). You want to minimize the negative stimulation she has associated with her face and food and eating solids is clearly only promoting that negative sensation.<br><br>
I really hope the therapy will help out. There are good therapists and bad therapists. Not all speech therapists know how to deal with feeding problems. We had services through ECI for 9mos before I dropped them because it wasn't working out. We now see an incredible SLP who specializes in feeding problems and we're on the road towards eating again.<br><br>
I write a decent amount about my dd's feeding problems on our blog located in my signature. I actually have an entry about our latest feeding session that I need to post at the moment.
 

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We have a six-year-old son who also was a micropreemie - he was a 26-weeker and spent six months in the NICU, then a year in a subacute care facility in their medically complex unit. However, we adopted him so he was not with us those first 18 months of his life, so we did not get to start working on the oral issues with him until then (although he was getting services in both hospitals). He was on a ventilator and had a tracheostomy tube until he was almost three years old due to severe BPD and grade III-IV subglottic stenosis. He also has had two Nissen fundoplication surgeries and has a G-tube as well. He has and had a severe oral aversion. He was 100% tube fed until late last May, when he finally made the switch to oral eating, but still will only eat very smooth purees. We do have to supplement fluids since he has a delayed swallow and does not take much for oral fluids, and I also still use his tube for his medications.<br><br>
We did TONS of ST and OT, feeding clinics near home and at larger medical facilities. He just would not eat orally. What it finally came down to for us, I think, is the fact that he had absolutely no digestive function left - all the bacteria had been killed off by near constant antibiotics his first three years of life, and he was full of yeast and unhealthy bacteria. We had been giving him probiotics for a while, and switching over to a blended diet through his G-tube helped some since he had a lot of trouble tolerating the formulas other than Elecare (still could not bolus Elecare but at least he gained weight well on it), but when we started him on digestive enzymes within a week he was eating baby foods willingly, several jars a day, and he has not gone back to tube feedings (other than a can or two of Pediasure as a supplement for his weight on an occasional day here and there when he doesn't eat as well) since he made the switch.<br><br>
The point I am trying to get to in my long-winded way is that if you haven't already considered it, perhaps starting your baby on probiotics now, and other ways to support intestinal health, might help you avoid some of the struggles we have faced with our son. Does her tummy bloat after she eats? That might indicate trouble with her digestion. How are her stools? Our son's tummy bloated after every single feeding prior to the enzymes. I think he just felt miserable and so did not want to eat. His stools floated (sorry - gross) and smelled worse than anything I have ever smelled. They are soooo much better now.<br><br>
I also think the therapy is very, very important. Just make sure it's someone who is very familiar with preemies who have faced medical challenges like your baby and who is familiar with oral aversions. It took us a while to find a therapist that worked well with our son - most of them had one approach and if that didn't work then tough luck, it was the child's fault not theirs - it was very frustrating to say the least.<br><br>
Also make sure you have an up-to-date video swallow eval if possible before letting therapists push her too much. We had several done before our son was eating orally well but he would not take enough orally to get a good study, plus he was terrified of hospitals and freaked out every time we went. When we finally got one last spring after he started eating it showed the delayed swallow and that he did best with pudding type consistencies. He didn't actually aspirate anything, but thin liquids would sit for a minute before he could swallow them due to his low muscle tone and thick substances were more difficult for him to move back properly to swallow. So, all the "behaviors" that the therapists had chalked up to fear and stubborness on his part when he was unwilling to try different textures of foods were actually protective instincts that were right on target for his physical limitations. In retrospect, once he started actually eating I would have let him get very consistent with eating textures and foods he was comfortable with and then gotten the swallow study done first, rather than listen to the therapists telling me he was just being stubborn and letting them push him as hard as they did - this probably delayed his progress significantly and definitely caused him a lot of unwarranted distress. Our son is still unable to chew foods (he just makes kind of a suckling motion with his purees), and I'm not sure if it's due to his neurological issues or low muscle tone or just his still strong oral aversion. I have not decided if, when or how much I want to pursue that issue - I have no doubt we will have a significant backslide in his willingness to eat if it's not done carefully and I don't feel it's worth the risk right now.<br><br>
Our son never took to the oral exercises so I can't say we had particularly good luck there, but I do know lots of kids like the oral stimulation so hopefully that will be helpful to your baby. There is the Nuk brush, and also Talk Tools has a website full of oral-motor sensory stuff. We have tried the Z-vibe (successful for lots of kids but our son is terrified of anything that vibrates near his mouth ...) and they have different vibrating and non-vibrating options, as well as different textured tips to work with. There are also different textures and sizes of chewy tubes and such available if she is interested in them. All of those oral stimulation tools can help if she is receptive. Our son sounds much like your baby - he would absolutely refuse anything other than his own fingers or a few select plastic toys that HE could put in his mouth, but nothing else. Perhaps by starting outside of her mouth and gradually working towards her lips, then touching her teeth, then a little farther in her mouth or around the inside of her cheeks, etc. maybe she would warm up to other things - hopefully since she is so much younger than our son was when we started all this she will be more receptive to those things. Snuggly mama had some good suggestions, too, with playing with the cloth and massage. Anything to help lessen her resistance, reduce her fear and help her trust that she won't hurt when something goes in her mouth - that was the biggest thing for our son. He had had virtually no positive experiences in his mouth and throat area so all he knew was pain from the trach, the intubation, the reflux, the surgeries, the oral and tracheal suctioning, etc.<br><br>
Anyway, sorry to write a book. I hope something I wrote is somehow helpful, and I know there are more mammas out there with more experience with this at your baby's current age. If I am confusing with anything here let me know - I've had a few interruptions.<br><br>
Best of luck and hugs to you!
 

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Gosh you all are so helpful!! I'm incredibly thankful for the advice--irangel and crazycat, your posts are WONDERFUL---I could have read all day had you kept writing. I am definitely going to take it a little easier as far as the food goes with my daughter and focus more on oral stimulation. Her reflux is so painful for her and it's so frustrating to know that everytime it happens it's just more negative reinforcement......GI decided it wasn't bad enough to do the Nissen....anyway, I digress....We are having some issues with blood in her stools as well (no bloating though), so they keep having to change her formula and just yesterday the doc. decided no more breastmilk for a week b/c they want to cut out any possibility of her getting dairy to see if it's a milk allergy. I use probiotics sometimes but I never thought about giving them to her...I will look into that. Anyone ever tried Gripewater? I am hoping that we can get this all figured out b/c it seems that the more they switch her food the more reflux she has. Anyway, I will check out those websites crazycat--thanks. It is so good to know that I'm not alone! I wish you all the best and look forward to hearing about your sweet kiddos PROgression!!
 

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DS had an oral aversion, relux, over-active gag reflex... I just took things super slow, and followed his lead. You already received some wicked advice, so I'll just 'yeah that' to the above posts! One thing I was told was that DS needed to be sitting independantly before we did solids. He needed to be able to hold himself upright, so that his eosophagus stayed straight. It really helped WRT the gagging.<br><br>
HTH!
 

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I don't know anything about the early aversion but my third child has serious reflux. Well she still has it but it is minor now and she is off meds. Anyways I was wondering where she sleeps? Do you co-sleep or a crib? We found that she did so much better when she slept elevated. I know you could rig up something in your bed or a sidecar crib if you wanted to (I made my own little elevated bed out of two wedge pillows for awhile) or if she is not sleeping with you a baby amby is the way to go! <a href="http://www.ambybaby.com" target="_blank">www.ambybaby.com</a> is their website. They are expensive but you can often find them cheaper on ebay. Even if she isn't have sleeping troubles (which my baby had and still has) I found that Eliana did better during the day after being elevated all night.
 
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