OK, well I couldn't make myself read all the posts, although I was interested in what everyone's experience was.
Here's our deal ---
DD nursed, but was never one of those kids who ate constantly - good eater though. She had no interest in solods until she was maybe 15 months or so and even then she wasn't over-joyed. She ate purreed stuff a little, although she would never eat any kind of fruit. She always made a sour face. You could get her to suck on crackers but she never really ate them. Her OT was worried she never ate anything she had to chew so she suggested cheese puffs - crunchy, but they still kind of disolve in your mouth. She did love cheese puffs (still addicted today
Near age 2 she started eating the real soft tofu, right out of the package. Well, around age 3 or 4 maybe she started eating less and not eating stuff she did before. She nursed until a bit after 3 so at least we had that to fall back on then. By age 6 her foods consisted of bread and butter, cheese puffs, soy milk, and tofutti cuties (mini-ice cream sandwhiches made with tofu instead of dairy).
At age 18 months the EC OT had a speech therapist come out and watch her eat and she said her eating looked great. At age 2 or 2 1/2 our OT (private - not EC) convinced me to let the speech therapist she worked with assess her. I felt hopeless, but I figured what the heck.
The ST said that she was not using her tounge to move the food back and forth in her mouth. Also, after I described to her about how she threw up and how the food did not seem to be coming from her stomach because there was no smell and it looked the same as went it went down....well, she said that she was storing the food in pockets in her throat or esophagus (I can't remember exactly) and when it would get full she would gag and throw up. This speech therapist had her drinking out of a cup at age 3. This was awesome because if you tried to give her comething without a sippie cup she would just pour it in her mouth with her mouth wide open and then choke.
Every Dr. beside our own ped. tried to get us to put in a g-tube and they didn't even know much about her eating - it was more because she was always slightly under weight.
We fought it like crazy because they just seemed to eager to not do anything else and just stick a g-tube in.
One day (I think she was 6) it hit me - we have to get a g-tube. I can't find her anything to eat. I brought home new stuff all the time with the hope that it'd be something she'd like. No such luck.
She had the surgery 2 or 3 weeks after the phone call to the ped.
Of course it turned out she had malrotation so they had to do that surgery at the same time.
We started formula after that and never mentioned food to her again, unless it was only to offer, and only once.
It took several months but she started eating more and more, with us taking the pressure off of her and her only having to eat for pleasure. 2, or so years later she was off of formula totally and we only used her tube for meds. It also came in handy when she was sick because I could stick lots of water in there instead of trying to get her to drink. She never would drink water - only soy milk, and now rice milk. There was more than once that she either was hospitalized or almost hospitalized due to dehydration from a normal childhood illness.
She did well (although still not eating normal foods - just a lot more than she used to with a bit more variety) until she had surgery this past fall. She was not allowed to eat or drink for 5 days and when it was time to eat and drink she wouldn't do it so we came home on formula for all her calories.
It took close to 2 months to get her off of the formula and back to eating. I tried not to panic that she would never eat again.
2 months later she had surgery again, but this time, not a planned surgery. She had an abdominal blockage caused by scar tissue from the previous surgeries. This time she wasn't able to eat for about 6 or 7 days. Luckily she started eating as soon as we got home, but she's till not back to what she was.
She spits out a lot of her "bites", but I think the variety of foods is the same as before- just way less of it.
Her current list consists of :
-ice cream (without chunks)
-crackers (only one kind and with butter)
-white bread and butter (or toast)
-any kind of pasta with butter
-pasta shells with orange cheese sauce
-whole wheat shells with white powdered cheese
-sour cream (she eats it in a bowl with a spoon or she dips cheetos in it)
-thick crust pizza that isn't crunchy on the bottom, with all the cheese and sauce scraped off
- milk chocolate
- pancakes once in a while, if we're lucky
- french toast once in a while, if we're lucky
- waffles once in a while, if we're lucky
- chocolate chip cookies, once in great while, if they are not at all crunchy
Nothing can be hard to chew or bite.
I'm sure compared to you guys we have a great list going
It is the best it's ever been really. She rarely thows up now - she spits things out , all the time, instead (which is way better for me).
She pretends to drink pop, but she doesn't like the fizz. She also pretends to drink juice sometimes. She tips it up until it touches her lips (with her lips closed) and then she says "mmm good"
It's all a social thing. She likes to do that at restaurants, parties or with friends. She likes to order soda at the restuarant and pretend to drink it.
She's 11 and I don't really know if things will ever improve and at this point I am not so sure they will. As long as she can eat enough calories and we can supplement with protein powder and/or vitamins - well, I'm happy.
Of course she has lots of other sensory issues, but this is just the eating stuff.
Sorry this was so long.