We met with Anslie's new Pediatric GI in Albuquerque on Tuesday. His name is Dr. Fahl. Here is what is going on:
We know that Anslie's digestive system works and that she is capable of gaining weight because she has proven that while on the feeds through the NG tube in her nose. She has also proven that her swallow function is correct via a swallow study that we did Tuesday morning. Her anatomy is perfect and everything is functioning as it should now that Anslie is on the reflux meds. What we need to do now is get her off that tube. She was refusing to eat anything solid so it has been determined that she has a psychological aversion to food and that is the only thing that will prevent her from gaining weight on her own. The NG tube is helping her do that, but it also seems to be irritating her throat so that it is probably sore, which makes her not want to eat. We were told that the NG was never designed to be a permanent solution and that it has been in for long enough. We just need to make sure Anslie will eat on her own.
So - Dr. Fahl has prescribed Anslie Cyproheptadine which is an antihystamine who's side effects include increased hunger and appetite. (It makes her really sleepy too, but we're not complaining about that:) His hope is that the meds will make her extrememly hungry so that she won't rest on the formula for all of her dietary needs and therefore eat more solids. We are starting on a half dose to see how things go for a couple days and if Kevin and I feel like the effect isn't strong enough, he told us to increase the dose to the full amount. We will weigh her at the Pediatrician's office next Thursday and if the meds are making Anslie hungry, if she is eating more solids, and if she has gained at least 4 ounces, then we will eliminate one of the 4 formula feeds per day. We will continue this course of action until the formula feeds are all eliminated and she is gaining the appropriate amount of weight (at least 1 lb per month) just by eating solids. After that, I assume we will faze out the medication until her natural appetite alone is getting her to where she needs to be.
Now, sometimes this medication doesn't work. It's not a "miracle drug" and there is a chance that, even if it does increase her hunger (which it doesn't do in all children) that her psychological aversions are too strong for the hunger to overcome. We will know by next Thursday if that's the case. If the meds don't work, the next step is to have a G tube surgically implanted into her stomach, continue with the formula feeds, and then enter Anslie into a feeding clinic where she will work with Speach Pathologists, Occupational Therapists, and Pediatric Gastroenterologists until her aversions are overcome. The formula feeds will give her the nutrician she needs while the doctors rewire her brain.
This course of action will be a lengthy process. Anslie and I will stay in Albuquerque for one week out of every month so she can go to the feeding clinic for 6-8 hours a day to receive treatment. It will be hard, but if that's what we need to do to get her healthy, we're willing to do it.
Anslie received the first dose of the meds last night. She slept in until 9am this morning. She ate some cereal for breakfast, the one meal of the day that she absolutely will NOT eat. I offered her some Chex mix as a snack a few hours later. She ate a pretty good amount of it. Lunch was offered about an hour after her snack, but she still ate some veggies and applesauce. She also took two of her four feeds. It's really premature and I most certainly DON'T want to get my hopes up, but I do feel like we could be on the right track here. Already, Anslie has eaten more solids today than she would normally eat over two days. But, this could be a fluke. I'm not counting her cured yet! We still have a long way to go!
I will post more info next Thursday after her weigh-in.