4 year daughter gagging/puking all the time!!!!!

Bri Lee - posted on 09/17/2017 ( no moms have responded yet )

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Ok, so my former 24 week preemie daughter is the most handful and difficult. She has DI (diabetes insipidus) aka water diabetes, along with other pituitary issues. She's on a GH (growth hormone) shot 6 days a week, and is hydrocortisone dependent. Mainly my issues right now is that every morning she is making a horrible gagging sound....and she eventually makes herself puke. She will do this over and over and over.....I'll have to give her normal morning medicines. Which includes her DI medicine of desmopressin either in a nasal spray or pill form. Normal, for her, is that she will be very thirsty and peeing alot because she will be needing her DI medicine. She will drink ALOT of water, because of her DI meds wearing off through the night. This is TOTALLY NORMAL and she will have a heavy diaper of urine every morning. But when she pukes, it's mainly just like watery egg-whitey mucus blobs. But, if I feed her breakfast and she's still some what pukey she will eventually puke up her meal. She has a g-tube, and so I give her most of her nutrition through her g-tube.
She's been to the pediatric GI doctor, given a stool softener, reglan to help empty her tummy more, and a stomach acid calmer. Things seems to work for some time, but now it's just like it was before, puking, gagging, more gagging, and even more puking.

The next thing that we all know will happen will be a fundoplication (sp?) the surgery where they tie off her tummy from puking completely.

She's in special early education and is working with speech, ot, pt, and more. I am just at a loss, because I am washing bedding every day because she pukes all the time. I'm at a loss of patience, and so tired of test after test, after test on my little girl.

tests done:
1. swallow study 4 times all came back inconclusive or looking normal
2. upper endoscope 2 times; everything was normal, stomach looked great, lining looks healthy, and this is where they noticed her tummy was not emptying out completely....(reglan med Rx)
3. Lower colonoscopy 2 times: intestinal lining was good, very healthy, but she was full of poop (senna Rx stool softner)
4. She's had tubes in her ears, and her tongue was slightly tied and they clipped that.


Pretty much she won't stop and now i'm wondering if this is a behavioral or something to do with her DI or her high oral aversion. She won't eat much solid food by mouth....she just nibbles on things. Hence, the g-tube for her main nutrition intake.

Any advice or stories of similar kids with this??? I'm so tired of scrubbing the floor and washing bedding!!! Thanks!

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