Posted By Posting
Oct 18, 2007
adonael
Nika 4 years - healthy and happy. Skyler 3 years - food allergies and intolerances, GER at 2 weeks, GERD at 1 year. Currently on 45mg Prevacid split dose, Reglan, Maalox X strength, and multiple respiratory meds for GERD related RAD (reactive airway disease).
Who has had the fundo?
Hi, I am wondering who has had the fundo and what leads to that decision. Particularly without a g-tube. Skyler is almost 3 and he holds down the little that he does eat, but he is a severe silent refluxer. He still arches in his sleep, and in his sleep its most obvious how much pain he is really in (and his bed is very inclined) with all the whimpers and shifting and waking and crying. During the day its not so obvious, but if you look carefully you see the signs and know he's still uncomfortable. You can see him double swallow alot after meals and even hear the gurgling sometimes in his throat or back. He's learned to live with the pain, but sometimes it does just over take him and we have a horrible few weeks to endure together. I would want the pain to be less and for him to sleep easier. Thats what I would like to see - he doesnt normally vomit, its all silent. He had a swallow and endoscopy both when he was 1, and the results showed some scarring as well as very violent reflux. Are there stronger meds worth risking the side effects, and that actually work, to try before surgery? I dont think he needs a g-tube ~ thats just for when they cant retain feedings, right? I'd imagine its time for another swallow and/or endoscopy too to see how things are now ~ we just moved to CT and are now looking for a new GI doctor.
Oct 19, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Hello! It is my understanding that the gi doctor will consider surgery an option if medical treatment such as positioning, diet and medication have not helped to control symptoms. If there are complications such as esophagitis, it is critical to control the reflux. I wonder if your doctor believes that all treatments have been tried. My daughter had the surgery and I have talked with MANY parents who have told me success stories about surgery. I bet most of these parents are not on the reflux forums anymore since their kids are now healthy. While there may be a slow recovery from the surgery, the long term outlook is generally very positive. My daughter had the surgery 7 years ago and she has not needed reflux meds for years. Her growth and food selections are normal for her age. Jan
Oct 20, 2007
adonael
Nika 4 years - healthy and happy. Skyler 3 years - food allergies and intolerances, GER at 2 weeks, GERD at 1 year. Currently on 45mg Prevacid split dose, Reglan, Maalox X strength, and multiple respiratory meds for GERD related RAD (reactive airway disease).
Hi Jan, thanks for your response. As you listed first, Skyler has had an extremely limited/altered/bizarre diet from the start. We have tried a lot of medication combos (and I am pushing to try something new again) and he also has been upright (even while sleeping) from birth. He responded to Prevacid well at first, but it never gave complete control and he would frequently have discomfort (daily, not just flare ups) and frequesnt flare ups lasting a week or two (sometimes more). The GI doc did recommended surgery when he was 1, but I felt it was too soon (we were only starting to try Prevacid at the time) and that we should try some medications first. Now its 2 years later from then and I'm just wondering if maybe its time to consider. As the parent, what does make you choose to go with the surgery? Skyler does (for the most part) eat. I am very concerned (as is his nutritionists) about not having a balanced or adequate diet, and his weight goes in gentle waves (up and down over time, but not rapidly enough to admit right away). He sleeps terribly, even on the nights following almost symptom-free days. At age 1 there was already some scarring to is esophagus (according to the guys and gals in the room for the test ~ there were 4 of them and me and Sky too, the room was small - it was a tight fit) but they said the Prevacid could help with that, which I dont understand ~ but I'm not the doctor. I'm the mom, and I just want Sky to be comfortable. Is there a med combo out there to relieve his pain? How do you know for sure when you are ready to consider the surgery? On here I've read of the kids who have the surgery having it done after having tube feeds and poor weight ~ but Sky is almost ok as far as his weight, thankfully - and he hasnt had a tube feed since he was an infant and only in the hospital one time (down his nose). His respiratory problems are starting to kick in again too (Tis the season, already). Its just really tough ~ I dont want to do it too soon, and the risks are so big... but he's in pain now too and we just never know how the next day will be.
Oct 21, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Hello! It is very difficult to make a decision about the surgery. I waited a long time before going ahead with the surgery in hopes that there was a non surgery solution. After trying all of the meds and diets, my daughter was still having pain, sleep issues and severe asthma. The pulmonologist said she was burning up her lungs and could have permanent scarring. She faced having the surgery or being on a lot of meds that were just giving her marginal control. It sounds like you are having sleep, pain and breathing issues too. I would encourage you to see a lung specialist such as a pulmonologist or a allergist. Also, it might help to talk with a surgeon and find out if the surgeon believes your son is a candidate for surgery. The surgeons I have talked with (the ones with much experience with the fundo surgery) will be albe to make a good assessment of the situation and decide if your son will benefit from the surgery. Since you are new to the area, I would recommend networking with other parents on this board or going to the NASPGHAN website at www.naspghan.org and searching for a gi doctor in your area. While some babies and children need the surgery on an urgent basis, it sounds like you can take your time and find the right doctors to assist you with this major decision. Keep in touch. Also, I would be happy to connect you with another parent who has done the surgery. Let me know. Jan
Oct 26, 2007
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
Quinn had the fundo. It turns out to have been just the thing that she needed. I posted her story on the fundo stories post.
Oct 31, 2007
kate
Mum with 4 yr old with silent reflux - resulting in dissolved tooth enamel, and pain
awaiting surgery
G'day, I share your anxiety about the fundo. Our 4 yr old was diagnosed with silent reflux in May, when we realised he had no enamel left on his teeth. In hindsight it is obvious that he has always suufered - the bad sleep, constant tummy-aches, snoring/gagging at night etc, but he such an active, happy kid we didn't pick it - abit more mother guilt there!He has since tried Zantac and now Zoton, as well as diet change etc, etc. We have been told that all the meds. in the world will only ease his pain marginally, none of them will fix the problem. So he's continuing on Zoton until Xmas at least and will prob. have the surgery early next year if his stomach lining is calm enough. I have also read the negative outcome stories, and had nightmares about the same, but we've decided to go for it now while he's little and hope like buggery it works, that the recovery isn't too horrendous and that GERD will one day be just a bad memory. I wish you and your family all the best, whatever treatment plan you follow, and will post our surgery outcome, hopefully it will be a 'good news' one to balance out those bad ones.
Aug 01, 2008
nanibear
Does this ever go away?
hello
I hope your baby feel betters. I haven't had the surgery for my daughter, but my daughter has a g-tube. G-tubes are usually for babies who won't eat enough on their own to nourish themselves.
Check with your
doctor first!