Whitney's visit with the new Gastroenterologist, DR. U. We all drove down to PCH for the day for 2 different appointments. I was so excited to get a call for us to come in sooner for the GI appt. because they had us scheduled for like 2 months away, so far that I didn't even write it down because I asked them to call if they had a cancelation. They called for Fri. but we were at the eye dr. Then they called for monday. So I canceled our OT and we to the GI instead.
Normally we see Dr. M. and I was really not liking him. He hardly did anything to help us! Anyway. so as usual Whitney starts crying the minute my mom put on the ID band on her leg. They called us back and this time we were prepared for vomit! We brough towels and cups and extra clothes...and guess what...she held it down! Even with all the crying and screaming (she was not in pain at all) she didn't throw up. She weighed 18lbs 13 oz on a different scale and is 32 in. tall.
The Dr. was really nice and listen to me and understood me. She explained everything really well too. She said that according to Whitney's height and weight she is technically "malnourished". She didn't say it as if it were life-threatening. Every GI dr. (4 different ones now) say that. I don't think they mean that she only eating rice and beans malnourished, she's just below the curve of the height to weight ratio. Whitney is getting a really well balanced diet of whole grains, milk, fruits and veggies. And plenty of water and vitamins. It's just not enough calories for her. Although she is growing at a steady rate, she still "needs" more. BUT when I feed her more calories or volume, she vomits! She just can't handle it. I completely agree though that somehow she needs more food. Whitney is so skinny that her ribs poke out, and she has like no body fat.
So she recommends trying Erythromycin. It helps with slow motility (how fast the stomach empties). She thinks that a combo of the GERD and Slow Motility makes her vomit. Even though Whitney was 2 to 4 big soft stools a day, she still was to trial that drug.
When Dr. U tried to exam Whitney and listen to her, then she started crying again. The doc said that Whitney has a really bad aversion and anxiety towards dr.'s and in new situations. Uh yeah she does! Unfortunately I can't communicate that sometimes they won't hurt her. I can't lie to her either saying that they won't cuz some appt. do hurt. I hope Whit just know that we are always there for her and are doing whats best for her.
Dr. U. also recommends an Endoscopey. Whitney had one done back in June and they want another for many reasons. The think that the sphincter between the stomach and small intestines might be the problem now. If so there are a few options that can help it. Before it was the sphincter between the esphogus which is why she is one the BETHANECHOL (which they did increase that dosage and I think that helped her to vomit less over the past week). So we will do that procedure in early March. Last time she did really well and she came home a couple hours after she woke up.
She also recommends doing a Swallow Study Clinic where all her Dr.'s including GI, Surgeon, Pulmonary, and Cardio and OT and ST come in and evalute her all at once. I'm so glad someone finally suggested this! I've always wanted all her Doc's on the same page. This study also will help them determine if Whitney is ready for intensive feeding clinic. So the Dr.'s will see if she medically able to and the Therapist will determine if her skills are ready for it. I'm not sure how the one at PCH is run though. I'm sure she won't get in for a while now but it's nice to know that people are helping us with her eating skills.
Whitney is just starting to taste new foods. So I want her to go at her own pace. It's a very slow process, but in my dreams...I want her weaned before we go to Dental School! Haha! Like I said, took us a year to get her medical conditions managed and to be able to lick and nibble small foods. But the other day she did eat 10 bites of chicken gravy and 15 bites of tomato soup with stars! Obviously it's not many calories but it's still a huge success.