Hi,

Allie has had a total aversion to all things food since about 2 months. We are making huge progress with her bottle aversion; however, she will only eat it easily when watching baby einstein. Otherwise, it's still quite a struggle. But, we're making huge strides since the days when she was NG tube fed and sleep fed.

I started solids around 4 months and she did fine with them until she got the NG tube (she got this while hospitalized when she refused to eat at 6 months of age - we took her off of it after about 6 weeks). Then, she started gagging and stopped eating them altogether. She used to scream in the highchair. She is doing better, but we can only get in about 3-4 bites per sitting of purees (I started making my own food based on a recommendation by you in another thread - thanks!). She rarely opens her mouth voluntarily, we usually get the food in the side of her mouth while she is chewing on a toy or playing with a pretzel. Sometimes, if she is distracted enough, she will let me touch the spoon to her lips or even open her mouth (rare). We tried letting her watch her video in the highchair, but this only works sometimes and I know that TV is bad for kids, so we don't do it that often.

Allie will sometiemes gag and make herself throw up while eating solid foods. I find that since I have started making my own baby food, that this does not happen anymore (I think it's a taste issue). It's been about 2 weeks since she's done this, although last night she did gag a little but did not make herself vomit.

So, her OT thinks she has sensory integration problems. There is a forum for this website that has a sticky with a checklist for sensory integration issues. The only one that I think applies to Allie is with eating. She is great with noises, lights, etc. She seems to be a normal baby unless you are trying to feed her, and then all bets are off. My husband and I think her eating problems are reflux related and have nothing to do with sensory issues. She does not have an issue with any sort of texture touching her (see picture below - tons of food everywhere, just not in her mouth)- she will dive right in and get messy. It's when the food gets in her mouth that she gags or has issues. She will put anything in her mouth until she realizes it's food, and then she won't do it. She will even let me put things in her mouth that don't have food on them. Once she sees that there is food on something, she will take her hands and wipe the food off. For example, she will put a clean spoon in her mouth, but she will not put a spoon with food on it in her mouth. She is smart.

So, Allie's OT sent home a Benik Vest with us on Friday. Do you have any experience with this? I'm not sure it does anything for her. I googled it and found that it is mostly used for kids with cerebral palsy who need help with trunk strength - for kids who aren't able to sit up, etc. Allie is doing great with strength, and we know that she does not have CP.

Anyway, I put it on her on Sat and she threw a fit, so I took it off. I tried later in the day and she did okay for about 10 mins, and I think the pressure on her belly made her reflux, so I took it off. Yesterday, she wore it for about 25 minutes.

When she's wearing the vest, she tips to the right and seems a lot more unstable and wobbly than she normally is. She was falling over when she was sitting up (which she never does anymore). This concerned me.

What do you think about this? Allie's current OT seems to think that Allie has Sensory Integration issues and that the vest will help her become more "organized" and to help her concentrate on fine motor skills, but I am wondering if Allie really does.

I'm not asking you to criticize Allie's OT - but I am just wondering if we are focusing on the wrong problem here? I'm sorry for the book, I wanted to give you a total history. I really respect your opinion and have really enjoyed reading your responses to other's posts.

Thanks,
Christyn

Hi Christyn:

I want you to know that I am not here for the purpose of criticizing other fellow OT’s. I am here merely as a sounding board and to offer my own professional opinion. I have found that I learn something new each day from all of the parents and professionals I work with J

Let’s now talk about Allie, who is just over a year. I think you mentioned she received a NG tube at 4 months, so I assume it was in for a while. In addition to the GER and the delayed gastric emptying, the NG tube is what I call a “curse” to my feeding patients. It is a garden hose down the throat that always causes a disorganized suck, swallow breath pattern (I see this on my modified barium swallow studies). In addition, it causes a hypersensitive gag and worsens reflux by keeping open (and weakening) the upper and lower esophageal sphincters. Christyn, it did not take much for Allie to throw up all of those times. She was already primed for it physiologically with that hypersensitive gag and easy passage way for the stomach contents to come right back up. Behavioral issues, if they are indeed a problem, manifest from all of the above mentioned.

Yes, your OT is correct about Allie having sensory issues, but I do not believe she has sensory integration dysfunction. Allie’s sensory issues appear related to her feeding. Christyn, your mother instinct is usually correct. Allie’s sensory issues most probably are a result of the ongoing GER, DGE, and hypersensitive gag brought on by the indwelling NG tube. I could be wrong, but a weighted vest does not appear to be what she needs. She needs some positive oral-alerting activities with new tastes/sensations to assist with normalizing sensation (desensitizing) her mouth with perhaps a little behavioral therapy to give her the confidence when she gags/vomits. I would, however, ask your OT if she could work on some core strengthening activities to assist with tightening those upper and lower esophageal sphincters. She might have great trunk strength, but weak sphincter closure. I get my patients on therapy balls in front of a long length mirror and basically have them do “crunches” with mommies holding toys over them, beside them, etc.

Regarding the food issues, that is great that you have started making your own foods. She needs foods with more alerting flavors as well. The baby foods are bland, low in caloric values, and are quick to set off gags. You can try backing off the spoon for now and perhaps try an Infadent or Nuk Brush (toothbrush section of grocery store). You can also go to your local pet store and buy fake food (dog toys). I dip these in food and kids love them! Little ones are smart and it sounds like Allie is protecting her airway. NG tubes can be very traumatizing.

When I am in therapy with a child who vomits, I throw a towel right over it, ignore it, and we proceed through the ten minute timed session before a 5 minute “play” break. Children will watch your face for a reaction when they vomit. It is amazing to me how they will continue to eat for me if I do not react to their vomiting. This does not work for every patient, but it is worth a try at least. Get Allie a new video and try the 6 second version. Make sure you are not shoveling. Put the utensil right in front of her mouth and have her come get it (on her terms). Give her the verbal cue “Take a bite” each time. You will hear “Take a bite” in your sleep, but it works! When she does take a bite, bring out the bells and whistles and turn on your new Baby Beethoven (ex.) video for 6 seconds only. Repeat the “Take a Bite” routine throughout the session, only using the video 6 seconds each time. Let me know how it goes.

Robynne