"How is Sophie's eating going?"

We get this question a lot and we haven't talked about it here much lately and there have actually been some changes, so I thought I would do a post about it.  The first thing is that there weren't many changes, and that was a problem.  For pretty much a year, Sophie has been 23 pounds.  A 23 pound 2 year old is (very) low on the growth chart.  A 23 pound 3 year old has fallen off the growth chart.  Well, today, Sophie weighed 25 pounds 2 ounces at the GI doctor's office!  I'll talk about how we did that later, but it may take a while.  I could literally write a book about all the stuff we've been through, but I'll try to recap.

1. Age 3mos-15 months.   Sophie received all nutrition through her g-button.  She couldn't eat much at one time and she threw up, a lot.  Seriously, 10 times a day, seemingly everything of the 2 or 3 ounces we had just given her.  Another downside to this was that she got little oral motor development, which led to difficulties in eating and speaking.
2. At 15 months, we did an intensive daypatient feeding program, 8 hours a day, 5 days a week for 4 weeks.  This taught Sophie how to spoonfeed and drink from a straw based on a reward system.  Literally, it was "I will offer you this spoon of puree and you have no choice but to eat it.  When you do, you get to watch a video and I will offer another spoon.  If you don't eat that, the video goes away.  When you take your bite, you get more reward."  This did 2 things: taught her to only eat when there's a video, and would get her to eat until she threw up.  I look back and I'm so sad about this.  But it did get to where we could get enough calories in her to only use the feeding tube at night.  
3. We continued the reward system and seeing the same therapists on an outpatient basis twice a week until Sophie was 2.5.  At around her 2nd birthday, she started eating solid foods.  She especially did well with crunchy things, like rice cakes.  Also, carrots and pecans.  (of course, carrots & rice cakes have very little calories).  But by last summer, she could eat a number of textures.   This was a very big development because before she would choke on many things and cough.  And if she coughs at all while there's stuff in her tummy, guess what?  Yup, it's all coming back out.  
4. We changed speech therapists last summer and worked on some new ideas about getting her to eat, but pretty much it still involved forcing/bribing/cajoling her to eat what was on her plate and depended on the reward of videos to keep her eating.  We also switched her to a gluten-free, dairy-free diet.  The reason for this is that she had a lot of developmental delays, and there are a lot of books that say that gluten and casein (a protein in milk) cause kids to be foggy and slow down their brain activity.  These are also the top 2 allergens on the American Association of Pediatrics list of inflammatory foods.  (Ever notice that on food packaging at the end of the long list of ingredients it will say in bold, "Contains wheat/milk/egg/soy"?)  Going off these things helps some people's digestion, and Sophie has always had constipation and tummy problems.  The issue was that the high-calorie formula we gave her at night was milk-based.  So we blended our own, but it couldn't be as rich and after a few hours it would separate, so she only got the watery stuff at the bottom and all the fats and proteins were left in the bag.
5. In January, around the time she turned 3, I read a book by a nutritionist named Ellyn Satter.  She outlined a new plan that Stephanie and I quickly saw as a way to make life less stressful for all of us.  It's the Division of Responsibility.  We would choose the what and when to eat and Sophie would have the choice of how much or even if she ate.  No more arguing.  No more "take one bite of this, then you get that."  No more bribing or begging or tears (from us or Sophie). This got us away from the videos, finally. (At speech therapy one day I had talked with a mom of a 5 year old boy who had been through all the programs we had gone through and gotten off his g-button.  I asked her how they got away from using the videos and she said, "Oh, we still do the videos."  We did not want to still be in that boat years from now.)   But we still had a lot of questions about the system that the book didn't answer, or we couldn't figure out.  Also, she hardly ever chokes or vomits anymore.  Whether that's because her abilities have improved or because we were not forcing her past the point of full, I'm not sure.
6. That brings us to the last stage.  In June, the GI doctor decided that he was finally concerned about Sophie's lack of weight gain.  He had blessed our experiments in #4 and #5 above.  Even though she was small, Sophie still is well-proportioned and has some meat on her bones, she's just tiny for her age (she still can wear 24 mo clothes, but 2T now fit and we're working up).  And she kept getting taller, which the dietitian said wouldn't happen if she were malnourished.  So back then he said he was okay if she didn't gain for 6mos or a year.  But then at the end of June, he said we should try to do something or we might have to go back to medications and testing. 

Thus, we came up with a 3-pronged approach: a) go back on dairy (if you want to lose weight, cut out everything in your diet with milk, cheese, whey, casein or lactose in it) and b) find a feeding behavioralist to help us, which also led to c) do some tube feeding during the day again.

So we think that a) & c) have led to the new gains we've seen.  She's gained over a pound in a month, basically, which the dr was very happy with.  There are downsides, though.  Stephanie and I both think we noticed that after going back on dairy, Sophie became more foggy for a while.  She seemed less attentive and just a little more spacey.  This also coincided with a period of bad sleep where she would not go to sleep until after 10 and I would have to drag her out of bed in the mornings for school.  But sleep is a whole 'nother post.  So maybe she was just tired.  And she's been better the past week or two.  

The other problems are that we weren't really doing the division of responsibility correctly and that tube feeding may be causing her to eat less by mouth.  We weren't giving her enough control.  The behavioralist recommended doing family-style meals, so Sophie can put only what she wants on her plate.  (we try to always present one thing that we know she will eat--but sometimes our guess is not right).  Sometimes she may eat only ketchup, or 1 bite of something, and say "all done".  And we have to take this huge leap of faith and let her do it without scolding or commenting on it or offering something else or vice-versa praising when she does eat.  But this time the backup plan was that after each meal at home that she didn't get enough calories, we'd supplement with a quick tube feed, so as not to miss an opportunity.  

And Sophie still has a problem with the volume she can consume, we've discovered.  After we started the supplemental tube feeds in the daytime again, we discovered that the max she can take at one time is 4 oz. (since we haven't been forcing her lately, we hadn't noticed)   And that is iffy.  On an empty stomach, 4oz might still cause her to vomit sometimes, and if she has eaten or drank some before, 4oz is almost guaranteed to cause an eruption.  And 4oz is such a small amount (she should be able to take 10-12oz the doctor says) and she has to have a break before she can eat again.  Especially in the morning--when she first wakes up, her tummy is just not working and it's hard to just get some meds and cereal in.  So if you do the math of how much she can handle at one time * how few opportunities are there if you need a 2-3 hour break between to digest * how many calories in the formula, you can quickly come up short of the amount of calories she needs to consume in one day to maintain her weight, much less catch up and gain.  (to maintain she now needs 950 calories and for gain it is recommended 1140-1250)  On an ideal day, it's hard.  When you have someone who has had such difficult experiences with eating and who can't keep food down, it can become something you obsess about.  

But today was good.  The doctor is pleased and we are pleased.  Basically, the division of responsibility will work eventually, but it's hard right now.  We have faith in it and we know that it might take years to get her on track, but we can't see any other way to do it that won't cause some kind of eating complex down the road.  The limited volume isn't even that big a problem since she did gain this time. So then the question is can we find a high calorie alternative that is milk-free? We and the dietitian are looking into that.  Hopefully we can come up with something.  If not, it might still be worth staying on dairy and just power through it to grow her some.  She might get big enough to just outgrow it.  

Anyway, that's some of what's going on with her eating.  I didn't even get into all of it, but I'm sure it's more than most wanted to hear.   Yer fault for askin'.   :-)  And if you see Sophie at a mealtime or snack, whether she is or isn't eating what's in front of her, or no matter how weird or inappropriate the food she has may seem, the easiest thing for all of us is if you please just don't comment on it.  I'm not trying to be rude, but it's the best thing.  And we'd rather not talk about it in front of her because she is aware of that now.  Believe me when I say we know what is going on with her.