HI my baby is going to be a year old march 15th, she came at 34 weeks.. she has turners syndrome and complete aversion to milk.. she has a g tube now, ,, just to give some history.. my question is.. textures.. she eats purees generally with no problem always has .. but if they are the slightest bit thick like thick cereal or i tried sweet corn caserole #2 foods which is very pastey.. she gagged.. its like she gets thicker foods to the back of her mouth and dont know what to do.. yesterday her speech therapist came and i tried to give her a cheerio per her request.. and she put it in and kinda chewed for a few seconds or gummed it i should say then when it got to the back of her mouth.. i dont know if she swallowed any yet but she gagged, turned red and puked up part of her previous meal..she has had two swallowing studies which were normal.. of course they didnt give cheerios..she drinks water out of a bottle fine.. never chokes or anything.. it just seems to be textures any suggestions?? her speech therapist that has been coming is rather young and admits she doesnt know ...so.. its frustrating to me i just would like to know what could help her get over this..

Hi Kristen:

I am not sure if you read my background, but my oldest child (9 years going on 16) has Mosaic Turner’s syndrome. This means not all of her cells are affected but she has some of the Turner’s features. Aly was premature and had texture issues at the same age as your little one.

I never use Cheerio’s as a first solid because most of my GER babies gag and throw up! I am not sure why your therapist tried a solid if your sweet baby is gagging on # 2 purees. I do not want to bash your therapist though…that is not what I am here to do.

Why has your daughter had 2 swallow studies if they were both normal??? I would think your physician would have stopped with one? My questions about the modified barium swallow studies are as follows:
1. How much of each liquid consistency did your daughter consume? Was it 3 or 4 swallows or was it 1-2 ounces? This makes a huge difference. In many MBS studies, therapists will just look at the beginning of a consistency and not have a patient drink a few ounces off of fluoro (x-ray) and then check again to take fatigue and endurance into account.
2. Has your daughter had a history of upper respiratory congestion, colds, sinus, or ear infections?
3. Does she have nasal congestion frequently, especially after she drinks? Does she sound like she needs to clear her throat after she drinks?
4. Do her eyes water or does she make loud noises when she drinks?

I have some suggestions to help your daughter, but first I need some answers to my questions. I’ll wait to hear from you J

Robynne

Hello..
i actually read your background after i posted the question to you lol.. Hannah is mosaic as well.. the geneticist said something like 4 out of 50 cells are affected a small ratio, so we're happy for that..really the only physical features she displays is small jaw , arched palate, (which i think could have something to do with her eating probs) and she had low tone when she was born,, which is gettin better with time..
Your question about why we had two swallows.. we have had 2 gi docs and i guess the first one didnt believe the first study or something because it was done in a different city so, yes we were mad that she had to drink the barium again.. but we went along with it because the first study was one of those where she took a couple swallows and the xray guy was like okay thats enough,, and i was like NOO she didnt drink that much and she didnt reflux of course... well the next one we had.. she did drink like over an ounce of the crap.. well she didnt show reflux then,, but they sent her for an abdominal ultrasound like imediately afterward, we layed her on the table and she puked all over the place..
I think hannah has always had silent reflux.. she never puked much at all as a baby.. just the bottle refusal.. and never had many infections either.. maybe one ear infection.. but she did used to sound like rattling in her chest after drinking as an infant for the first four months.. i know she had reflux but it was hard to diagnose back then... her eyes dont water when she swallows, but there are times when she sounds like she needs to clear her throat . the therapist heard her make this sound when she like takes a breath in,, and she said it didnt sound wet to her.. so i dont know.. but she swallows #2 purees fine.. she just doesnt really manipulate them they go in and down.. for the upper Gi she had they had her eat textures like sweet potatoes with barium in them and she done fine with that.. (we've had too many tests) the upper gi showed mild to mod reflux. If she gets anything hard in her mouth and it gets to the back of her mouth forget it she's gonna gag.. did your daughter do that? any suggestions would be greatly appreciated.. hope i gave you enough info....
thanks
Kristen.

Hi Kristen:

It sounds like the modified barium swallow study was very limited. They did not attempt anything other than a # 2 puree and Hannah is 11 months old? I’m sure they knew she was not eating anything else yet, but that information is very valuable as to what a therapist needs to work on. Is it texture hypersensitivity, decreased tongue lateralization, food getting caught up in her palate triggering a gag, lack of bolus preparation, etc.? Even if she gags and vomits during a study, that is information a clinician needs to know in order to make a treatment plan for therapy. I have found submucous cleft palates on MBS studies on babies between 6-12 months old who were having difficulty transitioning to food textures. Most of these kiddos have food literally coming out their nose during feedings as well. MBS studies are very diagnostic if done properly and cautiously. On the other hand, we have to limit the child’s exposure to radiation. This test has minimal radiation exposure typically.

Regardless, I am hearing several red flags for silent reflux and possible dysphagia including bottle refusal, a rattle in the chest after drinking, wet/gurgly sounds like she needs to clear her throat, inability to transition to new food textures, difficulty manipulating a bolus, and hypersensitive gag. Yes, my daughter had the same problems. When I treated her reflux correctly with a PPI and used my feeding therapy methods, she did just fine. I got rid of the Gerber baby foods and used pureed table foods with pleasurable tastes. The baby foods are watered down fruits and vegetables. They make me gag! I used yogurt, pudding, pureed casseroles, veggies, fruits, etc. I added a little butter, salt, pepper, cheese, cinnamon, and other spices for a little flavor. I would “grade” the consistency up by adding either crushed Saltines or graham crackers depending on the dish I was serving. I went from pulverized crackers (Stage 2) to crackers with chunks (Stage 3). It is amazing how well this technique works for patients (and my daughter). Give it a try J

Robynne