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Gas bloat syndrome,gastroparesis post nissen fundoplication

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Posted 1/26/2014 12:46 AM (GMT 0)
Hi everyone, I'm new to this forum and I'm hoping I can get some help here. My daughter, now 4 had the nissen fundoplication and hiatal hernia repair at 9 months old. She just started having tons if issues. Recently hospital for 7 days for chronic retching and severe pain. She cannot burp nor throw up. They diagnosed her with gas bloat syndrome, gastroparesis and duodenitis. They have her on miralax daily, amitriptyline and Prevacid. They said if meds font work she will need surgery, pyloroplasty but only 50/50 chance of working. My daughter has no appetite and in pain daily. We have her on gluten/dairy free diet to see if that helps. Anybody experience this or have any suggestions?
Posted 1/26/2014 3:51 AM (GMT 0)
Hi Kre,

Welcome to Healing Well! I'm so sorry to hear that your little one is having so many GI issues at such a young age. It must break your heart.

Unfortunately, I don't really have anything to tell you. I did have the Nissen surgery, but I think your daughter's situation is very unique, and your best source of information is in a Children's hospital.

I don't know where you live, but I do know of someone with a child who had severe upper GI issues, and has had excellent results and experience at the Children's Hospital of Philadelphia. (CHOP)
Here's the link: www.chop.edu/

I wish I could be of more help. Maybe another member will come by who has more information to share. I wish you the very best of luck!

Take care, and best wishes,
Denise
Posted 1/26/2014 5:14 AM (GMT 0)
Denise,

Thank you for the info. Anything will help! We live in albuquerque, nm and we are taking my daughter to the childrens hospital in Denver in 2 weeks. We are hoping they can help. I have heard great things about the hospital. I have also research the childrens hospitsl in Philadelphia and they had great reviews. If denver doesn't help we may end up there. Thank you for the well wishes!!

Kristen
Posted 1/26/2014 2:41 PM (GMT 0)
Kristen-

Welcome to the forum. Very sorry to hear of your daughter's troubles so young.

The meds she is on now, are they the only ones they have tried? Some people can have issues with certain PPIs and not others. Have you tried anything specifically for the gas such as gasx or beano? PPIs won't help with the gas. Also keep a food diary and watch for gas producing veggies.

Take care,
Bill
Posted 8/28/2015 11:59 AM (GMT 0)
Hi Kristen,

I read your post and I wanted to say that my husband(43 years old at the time I write this post) has similar problems. It's been more than 3 years that he developed severe asthma(although he has always been asthmatic) due to gastroesophageal reflux disease. In July 2014 the surgeon, during a Nissen fundoplication, damaged by mistake part of his vagus nerve and he has been with gastroparesis ever since, plus severe asthma. The Nissen would have given him improvement if it hadn't been for the mistake at the surgery. Due to his gastroparesis, the food stays trapped in his stomach for hours and, as a result, that triggers severe asthma. He tried botox injection on 23/6/15 and a second injection on 07/08/15 and his asthma and gastroparesis improved. Now we are considering pyloroplasty (with no vagotomy, of course, as he already has the vagus nerve damaged and this is like vagotomy). Free free to ask me anything about all that.
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