So today Marshall had a feeding eval. This is the first time we've seen a feeding therapist. We've worked with an Occupational Therapist for about 2 yrs now and they have worked a bit on feeding but not much. It's hard to make progress on eating when he's so inconsistent. We talked for nearly 2 hrs. She wanted lots of information. She was surprised at how many things I could remember. I knew all the meds we've tried for sleep and how they effected Marshall. She was stunned that his feeding issues have gone on this long and we have never had any therapy. That's because we had a Pediatrician who thought we were just bad parents and that if we just forced him to eat, he would eat. Or, if we made him not bang his head, he would stop. Another great one was, if we ignore him enough at night, he will sleep through the night. That was a dangerous one because, as we found out after his 1st sleep study, he had severe obstructive sleep apnea and his sats were dropping dangerously low while he was sleeping. THAT is why the child never slept. It was NOT because of bad parenting.
After we talked for a bit, she got some gloves for Marshall and some for her. She had him do everything to her first that she planned to do to him. She told him he was the doctor and so he should look in her mouth. She modeled how you open wide and say "ahh". Then she got a pink sponge on a stick (ya know, the thing they use to wet your mouth when you can't have water or food), and had him rub it on her tongue and cheeks. Then she told him to tell her to bite down. He thought it was really funny that he was the doctor. When it was her turn to look in his mouth, he wasn't scared at all. She also had him look in her mouth with a flashlight, then looked in his mouth. She said she was looking for his tonsils and he said he doesn't have any (he doesn't). He giggled when she said she couldn't see tonsils in there. He thought she was funny.
Then we went to the kitchen. She told him that he needed to pick a drink from the fridge (he picked strawberry milk in a drink box), a soft thing (he picked lemon pudding), and a crunchy (he picked salt and vinegar Pringles). He drank some of the milk, gobbled up the Pringles, even the tiny crumbs, and tried a lick of the pudding.
Next, she got out two spoons and modeled the behavior she wanted to see. She let him put the spoon in her mouth. She showed him how she had to open wide. They tried this several times. He had her open wide, then he puts the spoon in her mouth and brings it out as it scrapes her upper lip. Then it was his turn. He opened up only a little bit, with puckered lips. He acted unsure, like she was going to trick him and put some food in there when he said he was done. She put the dry spoon in his mouth over and over, making sure he would open up big each time.
When he got comfortable with that, she got out a few foods and just dipped the spoon in them, and placed it in his mouth, rubbing it on his tongue even. We have never used this technique before. I had never even thought of it. She got him to taste applesauce with this "dipping" procedure, and a stage 3 baby food (Oatmeal with apples or something like that). He tried Peanut Butter, and Nutella but he was getting really tired of all of it and didn't really want anything to do with either of those.
So, we will get her write up in a few weeks I guess. Until then, she said she thinks we're dealing with 3 things at once here.
- One, she said it seems like he's having bowel problems. Nathan has always had trouble too. It's genetic, she said. She was very intrigued to find out how much Nathan has been through with his bowel problems. He's been my "medical" child, while Marshall has been my "behavior" child. Totally different boys! Anyway, so her feeling is, he's not emptying his bowels enough. He complains all the time about his bum hurting. He doesn't always get all his poop out because his bum hurts. So, I started him on Miralax again. Both kids need it but I get busy and forget to give it to them! I need a timer and a schedule!! (10am, do an obstacle course with Marshall, 10:30am, give him Miralax, Pediasure, try to get him to eat, did he jump enough? Did he run enough? Did he swing enough?!)
- Two, she think she might have reflux. She suggested I read, The Reflux Book. She also had me look up "hyperalgesia". I did and it means an extreme sensitivity to pain. Hmm. I'm not sure on that one. I'll keep thinking. I'm also supposed to look up www.reflux.org. I did go to that website but haven't had a chance to read anything. I know, you're thinking, "Why not? Don't you have tons of free time?" ;) Haa haa. That's funny isn't it? Just kidding. I know you understand how crazy busy my days are.
- Third, she agrees there is some sensory and behavior component to all of this too. He has trained us in his feeding habits. He has for a long, long time.
So, what next? We wait. We try to get him having regular, painless BMs and read about reflux. She said she doesn't want us to jump into getting invasive tests. Rather, let's see if getting him regular will help. We'll take it one step at a time. Until then, keep giving him Pediasure. He needs the calories, the vitamins, and the nutrients that are in it. So, that's what we did today.
