Thursday, May 2, 2013

CF Appointment - Eating issues

We went back today for a CF appointment. We were supposed to do her infant PFTs with sedation but her doctor decided to cancel that and just use the appointment to discuss all of her feeding issues. She weighed 30.9lbs today and was 91 cm tall (right at 3 feet). So that is actually still really good, 80th percentile for weight and height I believe.

Even though she has been growing well, she still has not been eating well. She continues to love drinking Pediasure which is like a full meal's worth of nutrition but I still want her to eat. She never seems hungry, pushes away food, will take a bite and then gag and spit it out and things of that nature. It has made feeding times very stressful on me because I know how important good nutrition is for her. She is supposed to eat more fat and calories than the average toddler and I feel like (with the exception of Pediasure, she is eating less). Her doctor has said for a while she felt this was just normal picky toddler behavior. And to some degree, I felt the same way. She has definitely been exhibiting some behavioral eating issues. But I also feel there is more going on to affect her appetite. Her reflux has been getting a lot worse despite taking reflux medications. I can hear food regurgitating into her chest when I am holding her and she will pat her chest, make a grimace and say "mommy, burp". She coughs when doing that as well and is coughing more during and after meals. So they decided to put her on a medication to aid in GI motility (moving things through faster) so this will hopefully help with the reflux and the constipation.  They also scheduled an appointment with the feeding team to asses other possible causes of her eating behvaiors and work on developing a plan to get her eating again.

From a pulmonary standpoint, she is doing really well. No concerns there as of now. Her PFTs (pulmonary function test) was rescheduled for June 13th.

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