Posted By Posting
Jun 30, 2003
Anonymous
1st Nissen scheduled for 11 year old - Fear it will lose effectiveness after a couple of years
I was recently warned that fundos lose their effectiveness after a couple of years. This is a terrifying thought for me. My daughter, 11 years old, is scheduled for a fundo in July. She did not have GERD as a baby ? the symptoms began when she was 8. We have had all the tests (Motility (liquid and solid), Upper GI, gallbladder scans, and two endoscopes and Ph probes.) All the tests came back negative except the Ph probes and the upper GI. My daughter does not fit the usual GERD profile. The Ph results were positive, except when my daughter slept. She also does not fit the normal reflux profile because she has almost constant nausea. She continues to have reflux even though she is on 40mg of Nexium. She has also had some cyclical vomiting incidents over the same period of time - averaging one hospitalization for dehydration once every 8 months. My greatest fear is to put her through this surgery only to make things worse. There is no guarantee that the fundo will eliminate the nausea. We are so tired of living with this, yet we do not want to end up in a worse situation. What happens when the fundo is no longer effective. Are the kids able to throw up again? Is there damage? Please share your thoughts with me. Thanks, Nan
Jul 01, 2003
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Nan
Nan, I would tend to wonder if this truely is ONLY reflux. Has she been to a nuerologist? Has there been a cat scan? My son has had two fundos. The Thal NEVER worked. He was vomiting and refluxing the day after surgery. :( The Nissen worked for 6 months but this is the best his reflux has EVER been. We are now controlling it with Prevacid in the Caracream mixture. My friend's son was 7 when he had surgery for his Nissen and has not a had a problem since. I think it really depends on the child and the surgeon. I know this is not an easy answer. I wish I had something better to say! Do realize though, you usually don't hear about ALL the fundo kids. It seems the ones that had great experiences aren't out there to share. Carla You can email me if you like gjwtemple@aol.com
Aug 28, 2003
Anonymous
I have a five year old son who was diagnosed with severe reflux in nov.2002 and had a nissen in april 2003. HE HAS DONE FANTASTIC !!!!!!! M y husband and I feel that he is like a different child. We don't know how to act nor does he. I agree that a good surgeon makes alot of difference. I was very reluctant to have the surgery ,but now I am so glad we did. His vomiting,constant complaints of nausea,sore throat and Prevacid 60mg/day are all gone. We did try everything to avoid surgery and most good surgeons will help you exhaust all options before a nissen is performed. I would like to share with others that Nissens are a great help to some children . I agree that you never hear postive things about this surgery because I searched this web site and many others to find some one who had something postive to say before my son had this procedure. Bless you!!
Jul 01, 2003
Carol
Nan
I know you are trying to make a very difficult decision. My son has had 2 Nissons. First was a disaster, the DR perforated his stomach, which caused Peritonitus. Almost killed him. The second Nissen was perfect because we took him to CHOPs and had an excellant surgen do it. Although he no longer suffers from any reflux, he does get nausea and when he needs to vomit, he retches(it is now physically impossable for him to puke). We then have to rush him into the ER! Not a pretty picture. We do NOT regret his getting the second Nissen. He had severe GERD which was ruining his life. I just wanted you to realize that her nausea might NOT go away. Also, I know a child who has Cyclical Vomiting who had a Nissen, it has been aweful for her. She still needs to vomit as often as before, only now she can't and therefore retches... and ends up in the ER. MY suggestion to you is get a second opinion from a well known GI DR at a large teaching hospital( ie. Boston or Phili.). If you decide to have the operation please take your daughter to the best DR you can find.
Jul 11, 2003
Nan - Phoenix
Girl who has CV and a fundo
Thank you for your e-mail. My daughter was recently hospitalized with CV. It was difficult to control the vomiting and it took two days before she could eat or drink again. I cannot imagine going through that with the fundo. I would love to speak to the parents of the girl with CV. Do you think that would give you permission to send me their e-mail address? Please let me know. Thanks, Nan - Pheonix
Jul 03, 2003
Anonymous
Fundo
Nan, I'm sorry to hear that your daughter is having so much difficulty. A fundo is not a perfect solution to even severe reflux problems. I'm not clear what has led you to the point of considering a fundo. I would be very leery of a fundo considering that she has some element of cyclic vomiting. If she has a fundo, she shouldn't be able to vomit. She would be quite miserable during a cyclic vomiting episode. Has she had a gastric emptying scan done? Is her emptying delayed? If her emptying is delayed, she might benefit from a motility medication. The choices are very limited for this. But if your daughter isn't having significant life threatening complications from her reflux, I would seriously consider not doing a fundo and exploring other treatment options.
Jul 06, 2003
Nan - Mother of 11 year old considering the fundo
Responses to your messages
Thanks for responding to my message. Yes, my daughter has had two gastric emptying studies performed - liquid and solid. They both came back negative. We have also had a second opinion that confirmed the recommendation for a fundo. The doctors are associated with a Children's Hospital in Phoenix (a teaching hospital). The surgeon has been doing the fundos for 10 years and has a great reputation. To the best of my understanding, they are knowledgeable and caring doctors. I think our care has been good. We have tried Reglan, which sometimes helped diminish the reflux, but it did not abate the nausea. We have seen a neurologist. He recommended a trial run of Depokate. I am willing to try this, but it appears to more for the CV than the nausea. If it does not help with the nausea, we need to seriously consider the risk vs. the benefit of being on a medicine all year for CV bouts that only happen once every eight months. Question - I wonder if the prolonged use of the Nexium could be the cause of the nausea. It is difficult to know because if we take her off the med, she would have absolutely horrible reflux, lose more weight, and damage her esophagus. It is an interesting question. I am not sure how to get to the answer. We are scheduled to have a very specific motility test performed this month at Kansas University Medical Center (KUMC). We are praying that the diagnostic test and the motility experts (Drs.) shed some light on the cause of my daughter's nausea. I am very concerned about the cyclical vomiting (CV)with the fundo. We just returned home from the hospital on July 2nd from a bout with CV. A virus triggered the vomiting which landed her in the hospital for three days. Apparently if she had a CV episode with the fundo, a tube would be threaded down her throat to help with the vomiting. This gives me great concern. My duaghter has had refulux for over two years. Since October 2002, she has lived daily with unrelenting nausea and frequent reflux. She gets through the day on 40 mg of Nexium and two Zantac 75s. Her last endoscope showed no damage but the Ph probe was positive. So... Is it life threatening? I guess the clinical answer would be no - but I worry about the prolonged use of such strong medications and the diminished quality of life associated with the constant nausea. She has not gained weight since November 2001. She is in the 10th percentile for height and weight (59 lbs). Still, I do not want her to have a surgery that will make her life worse, not better. I hope that KUMC diagnostic results shed some light on this very difficult decision. The only decision I have made is to put the surgery on hold to allow more time to fully consider all the ramifications of the KUMC tests. I welcome any additional comments you may have. Nan
Jul 06, 2003
Anonymous
Nan
Nan, It sounds like you have been very thorough and have done all of the appropriate testing or your daughter. I'm gld to hear that you're going for motility testing too. My son is a couple of years older than your daughter and has had reflux since birth. He has had a rough time. There are other motility medications besides Reglan available. Spencer has used Bethanacol, Domperidone and is now taking Zelnorm. Maybe a switch to a different motility medication would help her nausea. I understand your concerns about having your daughter on meds forever. I hope you are able to get some helpful answers. I also hope she's feeling better since she got home from the hospital. Patti
Jul 06, 2003
Anonymous
Patti, It sound as though your son did not have the surgery. Does he have the nausea as well. Please let me know. Thanks, Nan - Phoenix
Jul 06, 2003
Anonymous
Nan
My son did have the surgery done just before he turned 4. He does have problems with nausea but we know its because of a reconstructive surgery done on his stomach 2 years ago. Patti
Jul 07, 2003
Anonymous
when does she take meds?
Nan- Don't you just love it that the side effects of the PPI's are abdominal pain and nausea. How are you supposed to sort it out?? I dunno. Have you tried using another PPI instead to see if the nausea changes with a change in med? I was also wondering about the choice of Zantac AND Nexium. These should not be given at the same time. I think they need to be spread out at least 5 hours. The Zantac will prevent the Nexium from being activated by the acid producing cells in the stomach - so you won't get the full effect of the Nexium. Ruth
Jul 11, 2003
Nan - Phoenix
Meds
Ruth, Thank you so much for your e-mail! No one told me about spreading out the Nexium and the Zantac! This is so frustrating!!!! We just recently starting giving it at approximately the same time, so, thankfully, we have not been doing the wrong thing too long. I have asked the doc to try her on another PPI, but he said it would not help. He believes that Nexium is the best. I think we will need to revisit that one - especially before any surgery. The Nexium has been working in that she did not show damage on the last endoscope. She still refluxes (confirmed by the Ph probe), but it not damaging the tissue. This has been a difficult time. The virus that caused the last cyclical vomiting (June 30th - July 2nd) episode has developed into a sinus infection. The drainage has caused coughing, causing asthma problems, which increases the acid reflux symptoms. Sometimes she is too nauseated to eat. I feel like a caged rat running on the wheel and not making any progress. I am praying that the visit to Kansas City Medical Center (motility study) will help determine the cause of my daughter's nausea and a remedy that has a good chance of being successful. Thanks again for your e-mail. Nan - Phoenix
Jul 12, 2003
Anonymous
Nan
Nan- I really can't imagine what you and your daughter have been going through the past 2 years - it sounds so miserable. And then the complex decision making you have been going through.... Since no one told you that Zantac would interfere with Nexium, I thought I would also mention that the PPIs should be given about 30 minutes before eating. This will help activate the drug and make it more effective. A number of parents have found that a change in PPI was the ticket to relieving their child's pain. But in your daughter's case I was suggesting that in case the nausea is a side effect of the Nexium, it would be worth trying a different PPI to see if this would relieve the nausea. This seemed like a better alternative to stopping the PPI all together and letting the reflux rage. Also, on the "GERD links" page they have some links to cyclical vomiting sites on the internet. I assume you've already found these, but just in case.... Ruth
Jul 05, 2003
Anonymous
second the recommendation for a second opinion
Nan- A friend's daughter had been followed for GERD for 5 years at our local Children's hospital. They decided on a Nissan and went to a more famous Children's hospital for the surgery. An endoscopy there showed celiac disease, surgery was cancelled, the diet was changed. Andie still has reflux but it is well controlled by meds and the other previously refractory symptoms have resolved. Before undertaking this operation, consider getting at least a second opinion and even more. Especially since your daughter is atypical and hasn't responded to Nexium. A fresh set of eyes may see something that the doctors who have been struggling with her daily management may have not considered. A pathologist may see something on her biopsies that was previously missed. A more experienced center will have seen more unusual and complicated patients like your daughter and might have useful recommendations for your poor daughter's situation.
Check with your
doctor first!