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Does anyone here have experience with dyspepsia? The doctor thinks Nitara may have this and after reading up on it, I agree that she might. The treatment that the doctor recommended was a g-j tube to avoid all food in the stomach and associated pain, and then put her on some pain meds until her brain resets. This doctor is a leading expert on motility and gut pain in children. He is not Nitara's regular GI (the expert is in another state) but he has worked with her before and they have a good relationship. I am not sure I agree about the GJ tube because it's a lot of trouble and Nitara does okay on slow continuious gfeeds with no apparent pain. I am also not sure about the pain meds because I am worried about side effects. I would just like to know if there are other options that don't cost $$ that we can look into. I would love to take her to a naturalpath or someone but we are in debt and paying it off and can't spare the $. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
I just want Nitara off the pump during the day and able to handle a bolus feed. The elemental formula seems to be good for her and she's a lot more comfortable. But if I try to feed her 2 oz by syringe she starts to look uncomfortable. If I feed her more than 4 she verbalizes that her tummy hurts, she feels like vomiting, etc. She will pant and gag and yawn. I even gave her a tube feed when she was deep asleep to see if it was just pychological and she showed the same behaviors and it woke her up out of her sleep. Nitara has really good cycles where she is able to handle larger feeds, but she does way better with real foods than formulas in some regards-- the real foods are causing her EE to build up. It's a catch 22 right now. Hopefully by this time next year she'll have enough safe foods back in her life. Right now she's on elemental formula to allow her to heal and then we will start to introduce one food at a time.<br><br>
Thanks for any input/advice. Her appt is next week and I want to have things to suggest with the GI.
 

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My son has symptoms of this although he doesn't/can't verbalize. They did a scope to look for EE and it showed only gastritis and inflammation in his duodenum which would be consistent with dypepsia in my understanding. Our GI suspected at the time H pylori which I'm sure Nitara has been tested for, right? Andrew was negative so they said there was nothing they could do other than keeping him on the reflux meds (which, honestly, I sometimes wonder if they alone make him sick). I wish I had advice. If you find out something will you please let me know? I'm really thinking about going back to the GI and throwing a fit because I know my son is in pain and feeling sick a lot.<br><br>
I do wonder if her pain will diminish, though, as her EE improves. Is that possible? I remember a mom saying her 7 year old who was dx. late with EE and went on elemental formula said that her daughter told her she never knew what it meant to feel good until she started to improve with the EE.
 

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Discussion Starter · #3 ·
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<div>Originally Posted by <strong>sbgrace</strong> <a href="/community/forum/post/7303222"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My son has symptoms of this although he doesn't/can't verbalize. They did a scope to look for EE and it showed only gastritis and inflammation in his duodenum which would be consistent with dypepsia in my understanding. Our GI suspected at the time H pylori which I'm sure Nitara has been tested for, right? Andrew was negative so they said there was nothing they could do other than keeping him on the reflux meds (which, honestly, I sometimes wonder if they alone make him sick). I wish I had advice. If you find out something will you please let me know? I'm really thinking about going back to the GI and throwing a fit because I know my son is in pain and feeling sick a lot.<br><br>
I do wonder if her pain will diminish, though, as her EE improves. Is that possible? I remember a mom saying her 7 year old who was dx. late with EE and went on elemental formula said that her daughter told her she never knew what it meant to feel good until she started to improve with the EE.</div>
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Thanks for replying! She's been tested for a lot of things, but not sure about H.pylori. I'll ask next week at the doctor appt. She also was only inflamed in her esophagus, not anywhere lower than that.<br><br><br>
I didn't know until very recently that dyspepsia is something that often comes with EE. Hopefully the new formula will help with that. Maybe I just need to give it more time. She is feeling so much better in other ways. She is more talkative and playful and has reached some new milestones just since starting the formula. OTOH she is still doing the somewhat constricted breathing-- I am sure she has asthma but just not bad enough for a dx. I have asthma and I know what it sounds like. It came after playing at the park. Oh well, one thing at a time, right? At least we had a few good days of breathing and clear (not hoarse) voice. I wish I could put a breathing mask on her to let her breathe good air, like she's now getting allergy-free food in her gut. She'd probably feel like a million dollars.
 

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I don't have experience as a parent but I do with myself as an adult. It is a catch 22 with the reflux meds. I've tried 2 something-pump-inhibitors and at first they help but then after a week or two I start to feel worse again. I'm not sure if mine has any allergy component but I've been biopsed and checked for celiac because of other problems and had my thryoid checked and it's not either of those. Doc thought it was stress and anxiety causing increased acid and it's very possible. I'm still on prilosec prescription and it's mostly working but I burp a lot more I've noticed. Aciphex didn't work at all.<br><br>
The nausea and pain was every time I ate something, it's much better now.
 

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Discussion Starter · #5 ·
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>pilesoflaundry</strong> <a href="/community/forum/post/7311023"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I don't have experience as a parent but I do with myself as an adult. It is a catch 22 with the reflux meds. I've tried 2 something-pump-inhibitors and at first they help but then after a week or two I start to feel worse again. I'm not sure if mine has any allergy component but I've been biopsed and checked for celiac because of other problems and had my thryoid checked and it's not either of those. Doc thought it was stress and anxiety causing increased acid and it's very possible. I'm still on prilosec prescription and it's mostly working but I burp a lot more I've noticed. Aciphex didn't work at all.<br><br>
The nausea and pain was every time I ate something, it's much better now.</div>
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THanks for sharing your experience. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> She's been on Prilosce since early December. She has been elemental formula only since 1/27. I have noticed a big drop in burping from her so I think I may drop the Prevacid for awhile and see if things get worse again. I don't want her on so many meds. Right now that is the only one she's taking daily.
 
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