Posted By Posting
May 12, 2004
Blake's Mom
Fundo, Gerd, Dysphagia
My son Blake was diagnosed with reflux and aspiration of liquids at about 2 years of age. He has been on Prevacid, Miralax (for motility and constipation), and we've thickened his liquids with thick-it since that time. Six months ago we discovered he had something called a vascular ring. I read information about vascular rings on the internet that said the ring can cause reflux and aspiration. He had the ring repaired. I was hoping his health would improve, but lately I think it is getting worse. He'll be 4 yrs. in September. He is chronically congested and an endoscopy recently showed that he had esoghagitis and gastritis despite being on Prevacid. We are strongly considering a fundo and feeding tube. I am worried because I read that the fundo isn't always sucessful. I hate to think of putting him through the surgery for nothing. I really think the feeding tube is necessary though. His breathing really has me worried. I'd like to be able to bypass oral liquids for a while and see if I can get his congestion cleared up. Anyone out there have similar experiences or knowledge you'd like to share? Blake's Worried Mom
May 13, 2004
Carla Gorecki
Fundo, GERD
My daughter had the fundo on February 6th of this year and so far is doing well (she is 25 months old). Our story was just posted on the web site if you want to read about it...it's "Chelsea's Story". Part of her problem before surgery was congestion, but the surgery didn't completely eliminate it. What we are now realizing is that she had some separate issues, but these issues were so exaggerated by the GERD that we couldn't tell what was what. The surgery was successful for her, and she never needed a feeding tube. Now that the GERD is gone, we are able to see she also has a sinus allergy that we are able to treat with Zyrtec. Her congestion is gone completely now. So in her case, and many others I have heard about, more than one treatment is necessary to acquire success! Hope it helps!
May 15, 2004
Don and Marianne Bates - Northern VA
Our son had a FUNDO
Hi, Our son is now 3 1/2 and had his first Fundo at age 7 weeks. We are very pleased with the fundo and are thankful that we did it. It is not without complications, though. Due to retching problems around age 1 1/2, sam herniated his nissen and it had to be redone. Since then, for two years, he's been doing great. He still cannot burp or vomit, and still has a g-tube for medicine and nutrition (as needed), but is otherwise developing normally. Fundos are definately a last resort, but can certainly be lifesavers, too. Feel free to email us if you'd like to discuss more. Thanks. v/r Don and Marianne Bates Don.Bates@verizon.net
May 19, 2004
Anonymous
Thanks and another question
Thanks for your responses. I appreciate the advice. I don't know why this surgery frightens me so much. My son has had other surgeries that I wasn't so torn up about. I guess I'm worried that it will harm him, so I have one more question. If there are complications with the fundo, can they reverse it? Thanks! Heather
May 20, 2004
Carla Gorecki
Fundo
To answer your question about if the fundo can be reversed....yes it can, but it doesn't mean it would be without further complications. According to the surgeon that performed my daughter's fundo, it can be undone if she wretches hard enough because she wouldn't be able to vomit. He said they could undo it if it was necessary but it has never been necessary for their patients. I am assuming the common thought would be why undo it if it was necessary in the 1st place. Any of the side effects my daughter had after the surgery was minor compared to the side effects she experienced from GERD before it. My daughter didn't vomit before, so wretching hasn't been a problem for her. I am pretty sure, from talking with other parents, that if vomiting was a major issue before, wretching may be an issue after. So that would be something to discuss with your doctor if that is the case with your son. What helped me make the decision to do surgery was this: our daughter had so many breathing issues when she had reflux; recurrent croup/ chronic stridor, apnea, and constant congestion. She also never ate, never slept, never played, and screamed all the time. I didn't want Chelsea to have a g tube because I didn't want her to stop eating completely, and therefore depend on this tube for feeding the rest of her life. When I thought about the long term consequences of that, it was something I didn't want her to encounter if it wasn't necessary. I also didn't want to continue to worry about the next time she was going to stop breathing. I was soooooo sad that she couldn't participate in anything or be around other people because she was always sick and prone to getting everything. I was also soooo sad that she stopped developing on schedule because she wasn't sleeping or eating or playing. I also have a friend who got Barr's Esophogas (a pre-cancerous condition) from having long term GERD. It made me see the reaity for Chelsea if it went on untreated. I knew the esophagitis could get worse and lead to a permanent narrowing of her airway which would make breathing always difficult. So, I decided that I didn't want to continue to allow Chelsea to live this kind of life if there was something that could help that I hadn't tried yet. I concluded in my mind that if we tried the surgery, and it didn't work, I could walk away knowing I did everything I could and pray for acceptance of the life Chelsea would have. So we did it, and so far, almost 4 months later, things are well. It was difficult, I won't deny that, but it was the best thing we ever did for her. Please don't take this as an encouragement to do surgery. My sole purpose in sharing this with you is to encourage you to sort through all the details of your son's GERD. Consider all the options and weigh them. Most of all, consider what your child's life will be without the surgery or with the surgery. Think of the potential complications of the GERD continuing. Then, read the information on the surgery and on the potential side effects of the surgery. Compare all the info and decide which is best for your child. If you pray, pray about it and ask God for confidence in whatever decision is made. You need to be confident in whatever decision you make so that regardless of what happens, you won't regret it. Please email me or call me if you want to talk some more. Carla Gorecki San Clemente, California tccgorecki@cox.net (949)481-3952
May 24, 2004
Anonymous
Your advice really helped
I wanted to thank you for responding to my post. We went to the GI doc today. I really feel a fundo is in the future. The GI doc ordered a gastric emptying study and another pH test. He said he wanted to try some non-invasive options first. I'm not sure what the point of the motility test is, because we've tried Reglan in the past with no success. We've also had many pH tests. But, we are going to do the testing in June, hear what he has to say about the results and then make our decision. The GI doc actually sounded as if he thought a fundo and feeding tube would help my son. But, he mentioned something about convincing the surgeons it was necessary. Thanks for all your help and support. Your posts really made me feel more secure about having a fundo. I am ready to push for one. Thanks again, Heather Schulte http://www.babiesonline.com/babies/b/blakefred/
May 28, 2004
Carol
Heather
Heather, The FUNDO can be an amazing help for a child with severe reflux. However, like any operation, it can have serious complications. My son's stomach was perforated during his FUNDO, and since the Dr didn't notice it, he ended up with severe sepcess. My son almost died from Septic shock and infection. When we took him for his second FUNDO, we researched to find a Ped.Dr who had done many Nissans AND was at one of our countries best teaching hospitals.Doing our homework, finding the most experienced surgeon at the best hospital worked for us. Blindly trusting the local Ped. surgeon did NOT. Please always check and recheck your Dr and hospital. Then and only then, go ahead with any operation. Good luck.
Check with your
doctor first!