Thank you Maya for the info.
The doctor said it may take 2 weeks for the Erythromycin to start working. I will definitely be trying to get her to take it a bit before meals. I was confused about that as a lot of antibiotics tell you to take them with food to prevent stomach upset.
I'm trying to get her on a schedule and several nurses had said to do the 10-4-10 schedule (don't wake her to give them to her) so that's what we've been doing. I will also ask the doctor about the liquid form of it.
I am a bit confused - this advice is not at all what we were told with multiple GIs.
You take Erthromycin BEFORE the meal, to speed up motility. So if my daughter is eating lunch at 1:00 pm, she will have it at 12:30 pm. 20 minutes to half an hour before the meal, always.
You're not using it like a regular antibiotic, you are using it for motility. You give it on an empty stomach.
It can still cause reflux because it is on an empty stomach. But if you use it AFTER she has food in her stomach, it will not work as well.
My daughter did have reflux with Erythromycin, so she took it once-twice a day instead of the three times she was allowed.
With Erythromycin, you should see an improvement pretty quickly. She should have less nausea and pain after meals.
Gastroparesis will not raise her CRP or cause bleeding - has she ever had a pill cam? Sometimes Crohn's can hide in the small bowel and MRE's can miss it.
Have they ever done a fecal calprotectin test for her? That will tell you if there is inflammation in her gut. If that's high and her CRP is still high, then I'd push for a pillcam.
Some of her symptoms do sound very much like Gastroparesis - being unable to eat, stomach pain after eating, weight loss.
Things like chips, pizza, things with a lot of fat, fried foods etc are going to make her sick. High fat foods are HARD to digest. High fiber foods are also quite hard to digest and that might account for her refusal of veggies (besides regular kid pickiness!).
I would suggest working with a nutritionist. They can help you come up with a balanced diet that she will eat. She should understand that things like ice cream and pizza are going to make her quite nauseous.
It's not for forever - my daughter will occasionally eat things like pizza. But she does really pay for it with belly pain and nausea afterwards. Sometimes she decides it's worth it, other times she eats something else. But while you're figuring out which meds work for her, and until she is stable and feeling better, I'd avoid high fat, high fiber or fried foods.
My daughter was 17 or 18 when she was diagnosed, so I let her figure this out for herself. With a younger kiddo, I would help her understand that certain foods are going to increase pain.
I'd be careful with a paleo diet since it's a lot of veggies. Or if you do it, make sure the veggies are well-cooked. We do a lot of soups here. Or things like creamed spinach. No raw veggies at all.
I am going to tag my little penguin, because she can give you advice, especially about Erythromycin.
Here are guidelines on how Erythromycin is given for Gastroparesis:
Both oral and intravenous (IV) eryth- romycin have been used for its proki- netic effect. The IV form is generally reserved for acute conditions. The oral form is usually given in lower dosages than required for antibiotic effects (ie, 150-250 mg PO 3 to 4 times a day given 30 minutes before a meal). The oral form has been shown to work rapidly and can be substituted when the IV form is unavailable.
) so we haven't even gotten that done yet. 
. So we are waiting to hear back from Pensacola in hopes that they can pull some strings. If they can't work any quicker I think I'm going to contact Tulane. On the east side of Alabama the nearest Rheumy after Pensacola is Orlando. So I'm going to try on the west side. 
