Feeding Evaluation

Today Landon and I ventured to the Children's Institute in Squirrel Hill. For those of you who are not from Pittsburgh, it is our local children's rehabilitation hospital. We have been receiving services through an early intervention program for feeding issues and physical therapy for about a year and for speech therapy for several months. He has made great progress with eating but we're a bit stumped and trying to figure out the next step. The feeding team consisted of a group of wonderful women- a nurse practitioner, an occupational therapist, a speech therapist, a psychologist and a nutritionist. The appointment lasted for about 3 hours so was incredible thorough. Landon didn't eat any of the food that I brought for him, which included his favorites, but he was much too distracted with all of the fun things in the room so I wasn't very surprised. The occupational therapist "played" with him during the evaluation which made it much easier for me to pay attention and to convey all of the information that I needed and wanted to. I put "play" in quotes because her evaluation was observation of various forms of play with him, for the most part. He really seemed to like her. She had some pretty cool toys that we don't have at home and was lots of fun to play with. Our main goal is to increase the volume of Landon's oral intake so that he has to rely less and less on the feeds. He was pocketing food a lot but that hasn't been so much of an issue lately. I think much of that was behavioral and a habit. First he wasn't eating at all, then he began to put food in his mouth and hold it there (which was okay with us because at least he was interested and willing to put food in his mouth). When he was doing this, we would try to help him move it to the middle of his mouth but when he wouldn't, we would take it from his mouth or tell him to spit it out. I realized a little while back that Landon was exerting a lot of control when it comes to eating. We never wanted to make it a bad experience for him so just followed his lead. It worked for a while, but we then realized that we had to take back some of that control. The psychologist agreed and praised me for what we have been doing and gave me a couple more recommendations. Meal time needs to start ending on Mommy and Daddy's terms- so allow some control but when we see that he is getting antsy at the table, tell him to take one more bite or one more drink before he gets down. She told us not to battle about it if he won't but then tell him that if he does not, then he needs to throw his plate in the sink. Then he sees that ultimately Mommy and Daddy are boss but that he has some choices in the process. Presently, Landon gets two bolus feeds (higher volume during a shorter time) during the day and one continuous feed (goes in his belly slowly throughout the entire night) while he sleeps at night. The nutritionist recommended that we work on eliminating the night time feed. Now, in my brain, I never cared if he had night feeds for another few years. He is asleep, who cares, right? Nope. If our goal is to get him eating on a normal schedule and routine then we have to depend on bolus feeds more than a continuous because they are more natural. We don't eat continuously for hours and hours. We eat, stop, get hungry, eat again, stop and we certainly don't eat while we sleep. So first we have to get Landon back on track with his feeds (7oz twice during the day and a continuous feed at a rate of 80 instead of 65 which is what we cut him down to when he vomited the other night). Once we get back on track, we are going to begin to cut back on the night feed and will add in a third bolus feed during the day. At first I was bummed to hear that (as was Jimmy), but now after thinking about it, I don't see why we couldn't do that third bolus feed right when he goes to bed and turn it off when it finishes in an hour or so. Then he could still be free of a feed after nap time but still get his last feed. Landon takes a medication that serves two purposes- it is an appetite stimulant and it helps to calm his belly so he doesn't experience as many GI issues. We give him this medicine at bed time because a side effect is that it makes you tired. Well, his appetite may have increased after taking it at 8pm, but it's night time and he is feeding through the night anyway so we'd never know the difference. It was recommended that we give it to him twice a day, at 9am and 4pm. Now we have to experiment a bit with this because I don't want him tired all throughout the day particularly on the days that he starts school at 9am. The speech therapist that we saw today thinks that he may have an issue with his esophagus. She didn't tell me the name but I imagine it will be in the report that is written up and sent to us. A researcher recently did a study about this particular problem in adults but she said that they are looking at it in children now and Landon fits the criteria very well. He has low muscle tone for one. The occupational therapist explained what this means and I actually learned that I probably have low muscle tone as well. Obviously I made it into adulthood with no problems which is certainly reassuring! Landon is very flexible. He can bend the tips of his fingers forward (go ahead, I know you are trying it right now)- so can I. She said that the usual way of holding a pencil is often difficult for people with low muscle tone so they tend to hold a pen/pencil using different fingers to make it more comfortable (yep- that's me too).. I read more about it that made me laugh because I also fit the low muscle tone definition. So, anyway, low muscle tone.. Landon chooses certain foods- foods that are "slippery" and go down his throat easily (i.e. salad with Ranch dressing, pasta with sauce) and although he sometimes eats dry foods (dry cereal, crackers etc)it is not his preferred food because it gets caught in his esophagus (if he has this particular problem). I reported that Landon has a bit of anxiety (it has gotten much better).. this is also an indicator of this "esophagus thing." She seemed pretty confident that he has it but you can only know for sure when a Cookie Swallow Test is done. We attempted this test in July and Landon refused. The treatment is fairly simplistic and would involve some exercises. It's not something to be incredibly concerned about but would explain some of the feeding issues. She wants to meet weekly with Landon to begin some of the exercises and wants to work on getting him comfortable enough to actually be able to perform the Cookie Swallow Test. I think a big issue for him is that lead vest that people have to wear. We'll have to work through the anxiety so we can get accurate results for this test. We will also meet with the nutritionist once a month and she will work on the feeds and how many calories he is getting and so forth... I am sure that I am missing quite a bit but those were certainly the main points. We are going to begin meeting with the speech therapist once a week and the nutritionist will be present at one of those sessions a month. Between all of the therapy he gets now, school two days a week and now going to the Children's Institute one day a week-we are really going to have to consider what to keep and what to put on hold because Landon and I certainly can't make all of those things happen each week. I feel good with the plan and goals, and I hope that he makes lots of progress in eating. It actually will be nice that eventually he will be off night time feeds particularly because we are going to transition him soon to a big boy bed. So, Happy Labor Day weekend. It's such an important holiday but it's also hard to celebrate the end of summer! I have to admit, I look forward to the fall, the Lots of Love for Landon Halloween Party (yes, we're doing it again!), the holidays and to meet Landon's little brother Jordan. This summer was great but I'm ready!