A while back I mentioned that CutiePie was considered a candidate for the Feeding Therapy at our local Children's Hospital. Our appointment was about a week and a half ago (yeah, yeah, I know - I'm a slacker at updating the blog.... Get over it). It was.... well.... interesting. We got there bright and early at 8am without having fed CutiePie any breakfast so she would be nice and hungry so the team of specialists could watch her eat breakfast. So we got comfy in a little exam room and in came an Occupational Therapist, a Speech Therapist, a Nutritionist, and a Med Student. I set CutiePie up with her much anticipated breakfast and we got down to business of watching her not eat. It couldn't have gone any better. I spent the entire day before in the kitchen making a ton of food she wasn't going to eat. She had chicken nuggets, cereal, shredded cheese, a blueberry muffin, some blueberry yogurt, a sippy cup of breastmilk, and a box of vanilla milk. As starving as she was, she picked up one piece of cereal and about three pieces of shredded cheese and that was it. She wouldn't touch any of the rest of the food, and then she picked up the milk box and sucked it dry. That was it. After that she started throwing food on the floor, trying to feed everyone else in the room - typical meal-time behavior for her. I almost wanted to laugh when they told me it was hard to evaluate how she moves food around in her mouth and how she chews/swallows if she doesn't eat any food. Um, yep. If she would actually eat then we wouldn't need Feeding Therapy! Then they asked me about a million questions about meal times, our daily routines, etc. We talked about all the modifications I've already tried to see if it would help motivate her to eat (moving high chair location, booster seat vs high chair vs kid sized table chair, eating with tv, playing with play foods, different plates/cups/utensils, different meal time schedules, etc, etc, etc). Then they left us there while they went to do some talking and researching to see what they could find that might help us. One of the ladies commented that I obviously had done my own research and was well informed about the most common suggestions (I even came up with a couple things they had never seen/heard before) so that combined with them not really being able to fully evaluate CutiePie I think had them kinda stumped.
After a little while they came back to tell me the following things:
- Speech and OT said they didn't know if there was really anything they could do to help since she doesn't really seem to have any physical limitations keeping her from eating.
- The nutritionist recommended starting her on a daily multivitamin, and even brought a print-out of a brand she thought might be safe. However, the vitamin contains citric acid and xanthum gum which are both corn derivatives. Supposedly it "doesn't contain any corn protein" so it "should" be safe, but I'm thinking probably not for CutiePie since she is sooooo sensitive to corn. Her only other suggestion was.....wait for it..... think about weaning off of breastmilk (CutiePie still gets about 12oz of breastmilk a day in a bottle) and giving her the milk boxes (which are low-fat milk) with some heavy cream mixed in. She started in on an explanation about how my milk isn't providing CutiePie with as much fat/calories as the milk/cream mixture would, but it was at this point I started to just smile and nod. Heavy cream is some fatty, creamy goodness but um.... how in the world could it be better than breastmilk?!?!
Heavy cream is from a cow's breastmilk and has calories and protein and fat, and that's about it. Maybe a little bit of vitamin A and a little Calcium. My breastmilk is from a HUMAN source. It's totally unprocessed, fresh, raw and what God intended babies to eat. It has all sorts of vitamins and minerals, not to mention the anti-bacterial and anti-viral properties. No way on God's green earth are you going to convince me that giving CutiePie an extra 12oz of cow's milk mixed with heavy cream is going to be an appropriate substitution for my milk. ::sigh:: That being said, CutiePie does drink one of those milk boxes a day and I have been adding heavy cream into it, but until she is at a complete diet outside of my milk I am not going to stop giving it to her! Okay, rant over. Back to the appointment.
After all that was said and done, we saw a GI doctor. He suggested starting CutiePie on Prevacid with the thought that maybe her reflux symptoms were causing her digestive tract to be damaged to the point of being uncomfortable which leads her to not want to eat solid foods. Makes sense to me. He also said that the typical course of treatment for kids who are diagnosed with EoE (they have talked about the possibility that CutiePie may also have EoE) is to scope them, then start them on a ppi like prevacid for six to eight weeks, and then scope again. So by starting the prevacid now, if it gets to the point they want to scope her for EoE, we would only have to go through it once. We also talked about starting her on a probiotic as well as trialing some Duocal to add more calories into her diet. Duocal is a powder you can sprinkle on her foods to add calories, but he warned it is made from corn sugar. So we are holding off on that for another day - maybe after the holidays. He also suggested some ongoing occupational therapy to try and help CutiePie eat more food and a wider variety of foods. He wants to see us back in January to evaluate her again and if she is still not gaining weight (and actually, her weight dropped to 19lbs 6oz for this appointment) then he wants to talk about scoping her.
Since then we have been doing the prevacid (getting it approved by our insurance is the topic for a whole different post.....) and it seems to be doing SOME good. She is sleeping better at night - no more coughing fits, no more random vomiting, no gagging at night and she is eating better, but still not great. She seemed to go through a little growth spurt last week and actually hit her calorie goal two days in a row, but now is back to a more pre-prevacid normal eating pattern. I still haven't heard from the OT department to get her started with that, but with the holidays approaching I wonder if it will just have to wait until after the first of the year. So the everyday mundane task of recording every bite of food CutiePie puts in her mouth continues. I just wish I had a problem with making sure I'm eating enough calories each day! The amount of chocolate I eat is directly proportional to the amount of stress I am encountering, and FPIES and everything that goes along with it is STRESSFUL. So if anyone needs a Christmas idea for me, some nice yummy dark chocolate would be much appreciated! ;)