Posted By Posting
Aug 19, 2002
Anonymous
Reflux Surgery: Any good news?
My son Christian was born 5 weeks early. Although his twin sister did well and came home from the hospital after a few weeks, Christian was in the ICU for 3 months with chronic lung disease. He came home a few weeks ago, and just when we thought we were out of the woods, he started developing pretty bad reflux. He now doesn't finish his bottles and spits up his feeding tube at least once a day. We are on all the medications and things don't seem to be working. Its only been a few weeks, but the reflux is worse and his growth has slowed significantly. Our pediatrician, who comes highly recommended and is with Texas Children's Hospital, thinks we need to schedule surgery soon. My question is this: has anyone had success with this surgery? I know that these message boards are populated with folks who have had problems, but I don't understand why this surgery is so "standard" when it seems like the side effects are severe and success is mixed. Any words of encouragement would be much appreciated. Thanks. --------------------------------------------------------------------------------
Aug 19, 2002
Anonymous
I'm sorry to hear your son has had such a tough start to life. It sounds like his GI is pushing for surgery due to his chronic lung issues. Some kids with reflux aspirate into their lungs creating a much larger problem than spitting up and pain. These kids can develop aspiration pneumonia, asthma, and permanent damage to their lungs. This is certainly something that your son doesn't need. You didn't say exactly what medications Christian is taking. That would help to know to see just how aggressively his reflux is being treated. Many children who have fundoplication surgery do well. I would imagine that the reason these boards are populated by those who have problems is because those people are still searching for answers. Those whose children are doing well, stop checking the list because problems with reflux aren't an issue anymore. Fundoplication surgery certainly seems to be becoming more common place. When my son was younger, fundoplication surgery was literally only a last ditch effort. It seems like more and more kids are being referred sooner and sooner. My son had a fundo done just before he turned 4 in 1993. It was not common at all to have fundoplication surgery then. I'm sorry I can't be one of those people who gives you a good news update. I hope that there is someone lurking out there who can! Patti
Aug 20, 2002
Anonymous
Thanks Patti. So far Christian is taking most of the GERD medications (Reglan, Zantac, etc.), though we have not tried Prilocek yet. Since we re-inserted his feeding tube this weekend, he seems to be gaining weight again. What I don't know how to evaluate is what separates the manageable reflux cases from those that require surgery. Christian's reflux episodes happen 1-3 times a day, so most feeds he is able to keep down. This seems better than some, though his reflux only started a few weeks ago and could get worse I guess. The other problem is, because of his lung problems, his fluids were restricted and he never really learned how to eat very well before he left the hospital. I think this has contributed to his weight problems as much as anything. That said, with the exception of last week when he did not have the tube and gained only an ounce or two, he has kept pace in growth with his twin sister. He is now 8 pounds 1 ounce and she is right at 10 pounds, and she was almost 2 pounds bigger when they were born. How is your son doing?
Aug 20, 2002
Anonymous
Hi. From what our GI has told me in the past (we've lived this multiple times), there are basically four criteria that need to be met in some sort of combination while on maxed out meds to be referred for fundo surgery. 1. severe failure to thrive 2. respiratory complications like aspiration pneumonias, severe asthma or apnea 3. esophagitis that isn't relieved with meds 4. pain that interferes with normal life Christian's reflux may seem better than some other kids but with his chronic lung issues, even more mild reflux may be a bigger problem for him. My son is doing better now since he had his most recent 2 surgeries. However, at 13, he remains partially tube fed, on lots of meds, has reflux, and unknown motility issues. Patti
Oct 08, 2002
Noelle
response to Patti
Patti- My son willbe 4 next month and his GI says we need to have a fundo due to severe esophagitis. He was on Prilosec for 6 months ( with noimprovment) and they are giving us 7 more weeks to see any improvement. Is it true about the side effects of the surgery? Can they really not throw up again or burp? Please let me know how your child did. Thanks
Nov 26, 2002
Anonymous
reflux and pyaloric stenoisis surgery
my son was born 2 mos early and had a mild form of cerebal Palsy...after coming home when he weighed 5 lbs he never held anything down...cried all the time....and did not want to eat...finally one day when he was 1 mos old we were in the Doc's office and he vomitted...she said can he do that again? I said sure..give me a bottle ..she did and she left the door open and said yell when he does..because i could tell exacly when it was going to happen...he drank some of the bottle and bam i yelled she came in a felt his stomach and had what she called an acroon in it.a lump she could feel..she sent us for an upper GI series and he had emergency surgery the next day for pyleloric stenoisis...w/GER...i thought we would finally be normal,eat,sleep and mommy also but no improvement...WE got to a GI specialist about 80 miles from us by our peds doc....and he redid the surgery....he was some better but not much...after that they did testing to see how long it took to digest his food.he only did 15% in first hour and 45% in 2nd hour so we had to be on Reglan,Zantac and another medication along w/his seizure meds for 2 yrs....he is now 12 yrs old and happy as a lark and you could never tell anything was wrong with him...he does get nauseous at times but he does not remember a thing about all his childhood problems and i just give him a tums and he is fine..he never will be or is a big eater..some of the Doc's say his system just can't handle it..he is grown up to be a great size for his age..just perfect but never will be fat as his stomach does not hold it like OURS does...but other than that you could never tell anything was wrong PBlazer604@aol.com thanx for letting me share
Dec 06, 2002
Anonymous
Noelle
I'm so sorry I didn't see your message til tonight. I don't know why because I look here every day. I hope it isn't too late to respond to you. It is true that a chid isn't able to burp or vomit after a fundo. Sometimes, over time, a fundo loosens and the child is able to burp and/or vomit. However, sometimes it loosens and the child is also able to reflux. My son's fundo just before 4 was indeed lifesaving due to a decrease in eating, severe esophagitis w/Barretts and respiratory complications. However, it was very swollen which the surgeon interpreted as being too tight. He couldn't swallow anything. The surgeon dilated him after 2 weeks which caused the fundo to loosen to the point he could swallow but he was also refluxing. Spencer has been through he&& but the only thing I would change if I could, was making sure we had the best surgeon available and that there was a G-tube inserted with the fundoplication. That way its there if you need it and if you don't it can be removed very easily. E-mail me if you want to talk more. sknmom@aol.com Patti
Oct 04, 2002
Anonymous
surgery
My daughter born 14 weeks early came home from the hospital with chronic lung disease and an NG tube because she wasn't feeding orally. After a few months she started breastfeeding and was getting good at it. She caught RSV and quit eating. once she was recovered, she started vomiting up to 4 times a feeding. She wasn't gaining weight and the vomiting made her not want anything to do with oral feedings. She had a Nissen fundo. and quit vomiting, burping or anything that a normal person could do. The day we got home from surgery, she started retching and gagging as though something wanted to come up but couldn't. This seemed as undesireable as vomiting. Several months later, Kira started to burp which I thought was great. Apparently, the surgery is to loosen enough so that she could burp. After a few weeks she started spitting up and then went back to vomiting. Her new surgeon thinks the nissen came undone which means the surgery was almost entirely wasted. There are side affests to the surgery and they include gagging and retching, something I wish I'd known before we had the surgery. I have read that the lung disease causes the babies to work harder to breathe and thus weakens or stretches the muscle that holds the food in the stomach. This is why the problem appears out of the blue. The information I have been reading about medications is not promissin either. Reglan apperently can cause nipple soreness since it is also used as a breast milk promotor in women. The choices we are faced with are hard to make. Read up on everything.
Oct 08, 2002
Noelle
surgery
My son is almost 4 and the dr. is really pushing us to do a "Fundo" but the side effects seem so terrible andit is not foolproof. We do not know what to do...they tell us that all this can develop into cancer later. We are very upset and confused. There is a new procedure for adults called the Stretta. I spoke to the company who invented this and as of now there are no definate plans of pediatric use. The youngest person they have done this on was 11 years old and was done at Motts childrens hospital in Mich.
Check with your
doctor first!