New here, Need help with GI visit Thursday

I am taking my dd to her GI (who is a female NP in Dallas-has been open to listen and do what ever needed) for follow up vist Thursday. We have seen her since about Nov. I’m not sure that I don’t need to encourge some other course of treatment. Here is where we are now (I’ll try to just give the lastest info)

Currently on Bethanechol 2mg three time a day and Prevacid 15mg Solutab once a day. She is better since starting meds–she is gaining wt and eating, but still very uncomfortable at night–doesn’t sleep.

My dd has not slept well all her life. She maybe has slept all night (5+ hours) 10 times UNTIL I started giving her Prevacid first thing when she wakes up in the morning and then 30min later feed her (thanks to info here!) WOW she slept all night from 9pm-7:30 am for 2 weeks straight, and that was even with a cold! I even was able to drop a dose of Bethanechol (was 4/day) The only other change was about a week before, I made sure I feed her dinner about 30 min earlier. THEN BOOM!!! Her snacks/meals got off usual times and she had a large amount of dinner later than usual==bad night. After about a hour-two hours in bed asleep she began the usual symptoms—squirming, crying out suddenly but eyes still closed like she is not really awake, kicking legs, sitting up and going from end to end of bed. Nothing I or my husband try seems to comfort her. I try holding her up right, burping her, patting her bottom, rubbing her tummy. Other things I notice is often when she finally gets relief, it’s after she passes gas (toots). However I did happen to have her head near my ear last time and I noticed when her tummy tightened (like she was pushing to poop/toot) I heard what sounded like gulping. Next morning she seems fine (she is a very busy child so I think that’s why symptoms are not as aparent during the day). But, the big problem the next day, no POOP! She normally goes every day, if she doesn’t, usually = bad night. That night sure enough another bad night. Then last night I got her Bethanechol dose off schedule and she missed her bedtime dose—slept all night even though she did not poop. that was the first time she didn’t have the Bethanechol at bedtime.

SO……. Here are my questions/concerns:

1) Dd has never had any “testing”–scopes, or xrays or anything. Just guessing it’s reflux and here try this med, add this one, add this and see if she gets better. Do I need to ask for testing??? May sound like reflux, but what if it is not?? Is this the norm–just try meds. I don’t want to scope her or anything unless necessary. What if reflux is secondary to something else?

2)I read here that there are concerns about Bethanechol but not really sure what? Do I need to ASK for something else esp since she is still not sleeping?GI thinks dd needs something to help with constipation/slow motility issues so that’s why the Bethanechol. I read on the MERI site they use Perpulsid. she has taken MOM once day but doesn’t need it but every now and again lately.

3)The last time things were not going well the first thing the GI want to do is ADD Axid. Why add another PPI? Is it b/c she thinks she is maxed out on Prevacid? I tried adjusting this and that and she got better but not much and I did not start the AXID.

4) M_PI–I went dairy free(when she was still breastfeeding some) and dd has been dairy free since Aug of last year. Seems ok with soy I guess. Dd never had blood in her stool, but very early on she seemed extra gassy after I had milk. I don’t know if she really has this, maybe its the soy too. I try to make sure she gets enough calcium with soy milk, and cereal, but she is not a veggie esp broccli kind of girl. Should I asked to have her calcium checked? Any thing else I should be concerned about if she isn’t having milk?

O my…. I can’t believe my post is sooooo long, sorry :< Hope it makes sense, trying to hurry and type this while dd is alseep

I just would like someone else’s opinion.

Thanks for your time and attention.