Feeding Appointment

Mom and I took Tucker to the feeding/motility appointment yesterday at Children's Hospital in New Orleans. Tucker slept the whole way there (he almost never sleeps in the car), and was a little "off" at the appointment. It was the first time I'd ever been to Children's; it seems like a nice enough place. Tucker weighed 15.8 kilograms and was 39 inches tall, this put him in the 22nd percentile for weight and 2nd percentile for height. This cracks me up because he seems so tall and skinny to me, I have to buy him long enough pants and then get them altered to be skinny enough. But according to the growth chart, he is a little chunky. I'd hate to see if he lost any weight, though. So the good thing about this is that he is growing, both height and weight wise. The feeding team includes a GI doctor, psychologist, and an OT. Two students also sat in on the meeting. The whole appointment took about an hour. I went over Tucker's entire medical history....at the end, the psychologist said, "well, it's no wonder that he doesn't eat." They watched him eat a little. He doesn't mind touching or playing with food (many kids get sick from the sight or smell of food), so he rubbed the cheetos crumbs and spaghettios around the plate, and ate a little of each. He also took a few sips of water. The team thought that Tucker actually had more potential than I had explained. They agree with his OT (Tucker had gone to OT Monday afternoon and we discussed his feeding) that Tucker wants to eat but several things are stopping him. His sensory issues are stopping the development of his oral motor skills. They agree with his OT that his food isn't even getting to his esophagus, so esophageal motility is not likely the problem. The doctor actually thinks Tucker doesn't have any motility issues, which was surprising to hear. Many kids with mito have motility issues, and lately Tucker has had constipation and diarrhea so much; the doctor said that didn't sound like motility issues, just sickness. He also looked at Tucker's belly and said that he isn't distended. Hopefully Tucker wasn't just having a skinny tummy day, and this doctor is right about his having no issues. The team all kind of looked at each other, then the OT suggested that Tucker start a medicine to help with his sensory issues. Tucker has been in sensory therapy for 2 years, and I had never heard of medicine to help those issues. The other members of the team nodded their heads in agreement, and the doctor wrote a prescription for Gabapentin, (neurontin), which is a medicine for seizure and pain management. It helps to stabilize membranes, which also helps with sensory issues. It will help to desensitize Tucker's mouth and tongue so that the food is not so hard for him to eat. As I took this information in, I asked if this drug would help all of Tucker's sensory issues. The doctor said it would, and that this medicine would likely help Tucker to improve in many areas. He said that Tucker might have pain every day, and he just can't tell us about it. Giving him this medicine could give him his first experience at a pain-free day, which would make his life better all around. I did not like that idea! To think that my son has been in any kind of chronic pain without us knowing is very discomforting. Tucker pulls his hair and grinds his teeth all the time. He looks like a pretty stressed out kid. Sometimes when he is just "off" with his behavior I will give him Advil or Tylenol and he becomes much happier. This only happens occasionally, but we always wonder if there is more going on with Tucker than what we can see. And of course he doesn't tell us anything. So, if he does have any chronic pain, this medicine should help. The doctor gave us a medical study that he co-authored. It was about using a pain management approach to getting nonverbal tube-fed kids transitioned onto oral feeding. It is a very interesting study. They began with 9 nonverbal toddlers, who had various medical complications that led them to be fed 100% by g-tube. These kids also had obvious stomach pain and issues, such as retching, which Tucker doesn't do. So the kids all got two things-one, they were put on the gabapentin, and two, they switched to a g/j tube so that for 8 weeks they got their formula straight into their intestines to give their tummies a break. Tucker is not getting that part. So at whatever point the kids each started eating better by mouth, the doctors added the megace in (medicine to increase appetite-Tucker was on this for many months with no real progress). After 8 weeks, 8 of the 9 kids were eating 100% by mouth. Months later, this was still working. The last kid was eating 50% by tube and 50% by mouth. The kids were weaned off of the megace at some point, not sure when. The GI doc said that the approach we tried two summers ago (giving Tucker megace to increase his appetite, then basically starving him out) is the second step in this protocol, not the first-that's why it didn't work. Tucker has to have weeks of positive eating experiences to unlearn all of the negative associations he has with food. They expect that once he has a more positive view of food, working with OT and speech once a week (plus the school lunch and snacks each day) will help his oral motor skill level improve. We have a follow up appointment in two months, and by then they just expect him to be trying food three times a day; they want him to take 5-6 real bites at each feeding. Their goal is not volume, just a change in his skill level and comfort. That's fine with us, just seeing a change like that would be great. As we left the office, Mom tried to gauge my reaction. I said the appointment could have been the best news we got in a very long time....IF it works. I am very skeptical of any good news, or any new medicine that is supposed to fix Tucker's issues. I am happy to try anything to help him, but I guess I just don't want to get my hopes up. After actually reading the study last night, I feel much more excited about the new medicine and how it could help Tucker. I will be filling his prescription tomorrow, and starting the med 3 times a day on Saturday. There should be no side effects, but I still want to wait for a non-school day to start the new medicine so I can watch Tucker carefully all day. I would love for him to be able to enjoy food. Having him eat even 50% of his food by mouth just seems unreal to me, but we will see:) It is so funny because Tucker's doctor in Houston is actually the doctor who suggested we see this feeding team. Tucker's therapists in Baton Rouge didn't even know that Children's had re-opened their feeding clinc after Katrina. (Apparently, they re-opened 2 years ago, but I had never heard of them...and believe me, I have asked around!) So we had to go to Houston to get referred back to New Orleans, and hopefully we are finally headed in a good direction.