Tuesday, February 25, 2014

Pre-Operation Appointment

Yesterday we had a check-up/pre-op appointment with the pediatrician. She took one look at Audrey and her weight and said she will definitely talk to the dietician about lowering her tube feedings! Audrey has gone from about the 25th percentile (her growth curve during 0-6 months) to the 60th percentile at 21 lbs 15 oz! She is still gaining about 1/2 pound every week, which if her growth keeps up at that speed she will weigh around 40 pounds at 2 years old-insane for her. So no wonder she is not making much progress with eating on her own, she's completely stuffed and growing at the rate of a newborn.

During the appointment we also had a urine culture to ensure she doesn't have any infections before the surgery next week, and a blood test to check her iron and lead levels. A urine culture means a catheter insertion but thankfully they complied with my request to use lidocaine so it was a bit less painful for her. (I've been told by several nurses that "catheter insertion at this age doesn't hurt" which is like being told "circumcision for a newborn doesn't hurt"-completely ridiculous and wrong.) The pediatrician messaged me late last night saying "her urine doesn't look good, we are waiting for the culture results, but we still have a week before the surgery." So I am assuming that we may need to either change and/or increase her antibiotics. I'm hoping this doesn't mean we will have to postpone surgery! Her iron levels are starting to fall again, which isn't surprising as she doesn't eat many solids right now, so she may need additional supplementation.

One thing that is bothering me lately is how feeding therapy is going. Everything was great at first and they were so supportive of her being tube fed breastmilk instead of formula and the OT wasn't pushy at all with solids during the sessions. But last Friday she started telling me that we have to start this reward game to get her to eat. She proceeded to demonstrate with a toy Audrey wanted: she would say "you need to touch/kiss this food before you play with the toy," Audrey would get upset, the OT would put the food up to her lips, and then reward her with the toy. This sent off all sorts of warning signals for me and I told the OT that I was not comfortable with implementing this strategy as I don't want Audrey to start ignoring her internal cues of hunger in favor of external rewards and that we won't be using rewards/consequences with her anyways. (See here why rewards in general aren't the best idea: http://hepg.org/hel/article/463). The OT got a little annoyed and said "it's a myth that eating is an instinctive behavior, it's actually a learned behavior and how is she going to learn internal motivation if you don't use external motivation?" The first part I agree with to some extent, but the last part doesn't even make sense. I'm not very good at defending my ideas when confronted like that, unless it's something I know a lot about, so I just said, "well I don't have it memorized but I can surely bring back some information next time about it." She asked if I would be ok with using verbal praise. I feel that's a bit better but still not ideal. This last weekend I started researching about conventional feeding therapy and Ellyn Satter's website in particular. I found some very interesting information, which boils down to this:
  • Food or energy prescriptions: Children vary greatly with respect to how much they need to eat. Calculated targets for energy intake can drastically overestimate or underestimate the child’s needs and increase the child’s resistance and/or discomfort relative to eating. In the long run, pressure to eat makes the child eat less, not more.
  • Positive reinforcement: Children eat because they want to. Praise, compliments, rewards, and other forms of outside reinforcement take away the child’s inborn desire to eat and pride in mastery

I emailed her dietician and OT some of these articles and am awaiting a response. Ryan and I both have been feeling like OT isn't doing much for her, especially at $250/half hour session. Any improvements she's made have been at home and not really as a result of anything we've done in therapy (especially since at most of her sessions she's not interacting with food very much and I'm usually just getting the OT up to date on recent events). We will definitely be reevaluating our current plan and medical team after the surgery!

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