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Starting this past Tuesday Danny started whining several times daily that his belly was hurting. Saturday night and then again last night he woke up *SCREAMING* in pain... We started Carafate before bed last night to try to coat his stomach and help whatever was causing all the pain but so far it is no better. He has also started crying a few times nearly vomitting because his reflux is getting so bad. That has happened 2 times today alone! He will cough and sputter while drinking something and I thought it had just "gone down the wrong tube" which happens relatively frequently (as in once a week at most). I asked if that is what happened and he said no. He said "The frog (which is to blame for all the tummy problems) is making my (food or water) come back up into my mouth and trying to make me throw up!" Then he starts crying... We saw GI in Cinci this past week and so far they have been no help. They are supposed to be "talking it over" and call back this week with some kind of plan... :/ We will see how that goes... Anyway... I guess I am just venting that he feels so miserable and there is NOTHING that I can do to help him...
BIG BIG and PRAYERS for you and Danny! Poor little guy! I'm so sorry he's so miserable. It's the worst feeling in the world as a mother to feel helpless when your kids are in pain. I wish there were something I could do to make it better for you.
I really hope this new GI at Cinci can get you some answers and come up with a good plan. And QUICK! KUP!
So far Cinci hasn't been much help...at least my first impression. This one is "talking it over with the team" that he works with to decide what/if anything to do and where to go from here. The GI here is still good though and we may have more options. We see the PA so she can't do any procedures but she can order them which is wonderful. She ordered an abd xray to check for blockage or foreign body or any sort that could be causing these. If this comes back normal and he is still having symptoms than she will order an upper GI series (barium swallow type thing).
We also saw the nutritionist on Tuesday before we left and she gave us some maybe good news as well. I will copy this from my post somewhere else....
So the nutritionist told me about an interesting case that we (Danny) reminded her of... They had another patient that had tons of food allergies, ate PLENTY, and didn't gain weight. They summed it up after testing for everything else that they must be missing an allergy or more somewhere. So they did an NJ for 6 weeks (nothing by mouth during this period) then pulled that child's tube. Then they added a food back in every three days and if he/she reacted then that food got pulled and they moved the next food intro back a week. She said that Danny would likely have the tube in place still while we were trialing foods and that IF they did that he would have a straight up J-tube rather than an NJ because he canNOT tolerate naso-anything... We would have the tube in still because this child will take formula orally. The child they have been working with has had a 100% turnaround. He is growing like crazy and everything. The only thing I am worried about is that the only allergy we haven't already cut out is wheat. It isn't celiac's...just a wheat "sensitivity". It is bad enough that he should have it out but the allergist said not to take it out now because he would HAVE to be tube fed. We simply could not get enough calories in him with wheat eliminated.
Wheat-the allergist, GI, nutritionist, and I all agree it would not be possible to meet his calories...a major point of debate on the other place I posted this. He has 15 food allergies without counting wheat and in addition to that he is on a liberal bland diet and can't tolerate any fruit other than bananas. He doesn't really like vegetables either... Go figure... So ya... We don't go back in to the GI here until April 17th but I am really hoping that she will just agree to go ahead and do this if nothing else works between now and then.
I also figured out part of the reason the Cinci appointment may not have gone so well. Do you remember when the PA consulted the dept head here and he squeezed Danny in no later than 2 weeks after that appt? Well, the dept head saw him one time...and I think he is the one that organized the info and notes for the doc in Cinci...not the PA that has been treating him since his Dr moved to Miami... :/
I'm hoping and praying things will get better with Cinci as they get to know Danny better. It does sound like this tube feeding/slowly reintroducing things idea might be a good thing for him. I hope you can work that out soon.
We tried sneaking in veggies. We made pizza sauce, etc with it but he is allergic to tomatoes so that one is all pureed veggies and he hated it. :/ He will eat squash that I boil until it is soft, stick in the blender, and add about 1/2 cup of butter. (2 summer squash and 1/2 cup butter...just for him.)
The belly pain has gotten worse again...still on Carafate. He has been crying ever morning, afternoon, and evening (and woke up 2 out of the last 3 nights) crying that his belly hurt. The abd x-ray was normal so they are doing the upper GI series on Tuesday morning. I am hoping it will show something...