Fundo

[Anonymous]

I know I’ve only posted here once to introduce myself, but I wanted to post an update.

My daughter, Aidan, is going to have a fundoplication next Tuesday. She completely stopped gaining weight, and then they diagnosed her failure to thrive. She was switched to an adult’s dosage of Nexium, and now she has surgery scheduled.

[Anonymous]

I am sorry about this. I know that there are a couple of moms who have had the fundo done (christine kevieb will probably reply soon) and the babies are thriving. However, a lot of people are not comfortable doing a fundo UNTIL they have done all the testing possible on their children, so i feel like i should ask (just bear with me, you may know this)

(Matthew was also FTT and he never required a fundo and is thriving with just a feeding tube).

– had upper GI and endo/biopsies to rule out other things like abnormalities, allergies, bacterial infections (thrush?), e.coli??

– maybe a swallow study to rule out aspiration?

– pH probe to determine the severity of the reflux?

– is she eating or just not gaining? Sometimes there are other underlying causes for them not gaining

– DGE? sometimes babies have a hard time emptying stomachs and i uundedrstand that the fundos can complicate this a bit further

– medicated with a PPI for a while and soemthing else (Like erythromycin or reglan) if DGE was diagnosed?

Sorry about all these questions – i know nothing about fundos but i knw that you can have a feeding tube (that wouldd sort out the FTT if there are no metabolic issues) without fundos, like Matthew.

For some babies, like Sylvia (DD of Kevieb) the fundo was a lifesaver so if you had the tests and have a good GI and they have determined that is what she needs, then it may be a wonderful solution for her!

[Anonymous]

Questions are ok. Here is our journey through GERD: She’s had a chronic cough since about 7 weeks (she’s nearly 6.5 months now), and when they did the pH probe, the results showed that literally every time she coughs, she was refluxing. Also, she has completely stopped gaining weight, and twice this month she has lost weight, even though she eats great. The diapers we’ve had her in for over a month are now too big again. We have tried everything… LITERALLY. We’ve done a complete elimination diet; she’s had biopsies done to check for allergies (along with 2 upper GIs and 2 endos); She’s been put on special formula, Neocate, (but we are back to nursing as she wouldn’t take the formula and it didn’t help anyway); she’s been on zantac, reglan, bethanechol, prevacid, many different combinations of the medications, and now we’re trying the nexium by itself. At 2 months, we tried the oatmeal cereal in the bottles of EBM. She’s been on solids for about 2 months now, and they haven’t helped either. She can sit up some and she’s getting to where she can stand some. None of this has helped and things are continuing to get worse. She screams in pain when she eats at night. We’ve already had the pneumonia scare once. She doesn’t have problems with her stomach emptying. This kid can poop paper (she’s gotten ahold of one of my magazines).

This specialist is not pushing for surgery. Infact he doesn’t even want to do it, but he feels that every other option has been explored without success (and from everything I’ve read about reflux, every option has been). He is the second specialist we’ve taken Aidan to. His daughter also had reflux, and he told me that if he had ever been in the same position with his daughter, then he would have suggested and done the exact same thing he’s doing with us. He’s tried everything under the sun with Aidan. He does not want to do the surgery, but he feels like there is nothing else he can do for her. She was already on the highest dosage of prevacid, and now she’s on an adult dosage of nexium. I’ve been told by other doctors not with the hospital he works at that he’s one of the best in the nation. So, I trust him… ya know?

It’s just so hard. We’ve been trying to find every excuse under the sun not to do the fudno, but her reflux is completely out of control.

[Anonymous]

UGGHH – I am sorry about this. Sounds like it is bothering her so much it may be worth it. (BTW – babies may poop fine but may have DGE meaning that the food is stuck in teh stomach for a while and therefore they are not hungry). But one question – you are saying she eats enough but she is not gaining?? Is she vomitting? That is the one thing i do not understand. When Matthew did not gain or lost weight it was because he would stop eating or eat less than he should. Having said that, there is a mom here (lisaann) whose baby eats a ton of calories but does not seem to be able to put on weight…same with Christian (lauralee)… for a while he was on 1200 cal a day and seemed like he would not put on weight but all of the sudden he is gaining!!

Another thing we have all done (ie the babies who do not eat or do not gain) is have some type of MRI or brain scan. matthew had a sonogram at 5months (his fontanel was pretty wide still) to make sure there was no pressure anywhere on the brain.

It seems like Christine is the right person to give you some hope then!! Her Sylvia was very much like your baby (although i am not sure about the choking) and it took some time after the fundo for Sylvia to be back on the charts (if i remember correctly) but she is really thriving now!!

I am glad that you trust your doctor – that is so important and makes all the difference. Please keep us posted and i will be thinking about you. The tube has been a life saver for us and i pray that the surgery is the answer you have been looking for.

[Anonymous]

Yeah, sorry, Aidan is a spitter. She could puke concrete, which makes bedtime frightening for us cuz she still does it in her sleep.

[Anonymous]

Oh i am sorry – i remember those days…. but Matthew’s problems was one of intake really. Poor little baby

[Anonymous]

hi amanda—my sylvia had a fundo shortly before she turned 10 months old. she was anemic, failure to thrive, her esophagus was getting ulcerated, and she was refluxing almost 25% of the time. she would eat and then spit up repeatedly and then she would eat again. when sylvia had her fundo, they discovered she had a good sized hiatal hernia, so there is nothing that would have helped her except surgery. sylvia’s reflux ended immediately with surgery and she has never had any complications from her surgery—-but she continued to be failure to thrive until she was 2 years old. after her fundo, she developed obstructive sleep apnea. she sounded like she was struggling for air when she slept, which kept her from getting the deep sleep—-which is when you do most of your growing. her tonsils were so large, that she would chew her food and then spit it out rather than swallow. sometimes she would just refuse to take bites of food. she also got esophageal thrush. when we put her on diflucan and i quit nursing, we briefly saw some improved sleep and weight gain—but she got sick and it was a struggle again after that. she had her tonsils and adenoids removed (and an inguinal hernia repaired) right after she turned 2 years old and has been thriving ever since. she hangs around the 17th percentile now—-she used to be below the 3rd. at 3 years old she weighs 27 1/2 lbs. she is still small, but she is doing great.

will they be doing an open fundo or a laparoscopic fundo? if you go to the little gerdlings website, i have a picture posted of sylvia’s surgery. it shows the hiatal hernia and the stomach wrap. she has 5 tiny little scars and she was only in the hospital for 2 days and 1 night.

i wish that i could do fundos on my twins—they both have reflux and the meds are so expensive.

kevieb2006-10-6 18:44:10

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