Posted By Posting
Jan 25, 2004
Windymastro@comcast.net
Dysmotility and Nissen??
HI All, Anyone have a child who was a poor candidate for Nissen and needed one anyway? I have a 7 year old with severe asthma with microaspiration pneumonia related to GERD...BUT he also has upper esophageal dysmotility because all of this is due to his TEF(tracheoesphageal fistula) repair at birth. He is starting to show a lower lobe chronic infiltrate from the frequent pneumonias--so we need to consider surgical options, as he is on maximum medical management with PPI medication and motility enhancing meds(actually receiving cisapride from Canada). I would so love anyone's input who has been HERE before! Also, any news on less invasive alternatives for pediatric patients(Stratta, EndoCinch)? Are they still years away for use in pediatrics? Thanks so much! Windy
Jan 25, 2004
Carol
Dismotility and Nissen
Windy, Sorry to hear your child is having problems. My now 15 yr. old had severe GERD that wasn't diognosed until he turned 7. After i yr. of being maxed out on anti reflux meds and getting worse we did a FUNDO. Due to complications he got septic shock and had a second emergancy surgery 7 days latter. The second operation undid the Fundo. When he was 10 ys. old, he had a second Fundo and a Pyloriplasty( scare tissue had damaged his Vegus Nerve. Now he has no reflux, BUT... he now has Colon Inertia. It is another form of dismotility caused by scare tissue and Vegus Nerve damage. Now he gets very constipated, which causes him to need to vomit. He can't vomit due to his full wrap Fundo. Not a pretty picture. I suggest that you try every possable med before considering a Fundo. If you do decide to have the Fundo, make sure that you choose an excellent teaching hospital and a DR. who has done many Fundos. Our son's second Fundo was done at CHOPs by Dr. Scott Adzack and he was amazing. The second Fundo was done correctly and has given our son a much better quality of life. Good Luck. Carol
Jan 25, 2004
Windymastro@comcast.net
Nissen and Dysmotility Issues
THANKS, Carol for your insight! YES, I have known about Nissen Fundoplication since my son was an infant and have been buying time trying to avoid it! I knew and worked with a pediatric surgeon, Dr Scott Adzick years ago at UCSF in San Francisco...could it be one and the same? If yes, he truly is a wonderful human being as well as a talented surgeon. I am sending you good thoughts regarding your sweet son...we sure are given a challenging charge in parenting these special angels...aren't we? It puts life in perspective, which I can easily say as I complete a grieving cycle after each episode. Yes, it is SO important to have a talented and willing gastroenterologist on this path of GERD... Take care, Windy
Jan 25, 2004
Patti
Dysmotility & Nissen
Hi Windy, My son had esophageal dysmotility due to severe esophagitis (after 3 previous failed fundos). He is not a fundo success story but it was most like completely due to not having a great surgeon. Given your son's complex history with TEF, the most important thing to consider when making the decision for a fundo is to make sure that you have the best surgeon around. I know the circle of pediatric surgeons is small but there are only a handful that are expert peds esophageal surgeons. We were very fortunate to have found Dr. Hendren at Boston Childrens. He is older and now is only rarely operating but he has referred us to Scott Adzick for my son's follow-up. I read the other responses (yours and Carol's). I checked on the CHOP website and Scott Adzick was at UCSF. We have had several meetings with Dr. Adzick and like him very much. My son will be having an open lung biopsy with Dr. Adzick in early Feb. I'm sorry I don't have any words of wisdom for you regarding your child's upper esophageal dysmotility and a fundo. I hope you are able to find someone who can help. Patti
Jan 28, 2004
Windy
HI Patty, Wow, I am so sorry to hear that your son has another procedure ahead...is it related to GERD or another, separate issue? I will be sending you good thoughts! I have been thinking about the dysmotility and need for fundo--he will probably need a G-tube in case he has severe feeding problems...anyway, thanks for your insight! I am so glad you like Dr Adzick! Wish I knew who he would most highly recommend on the West Coast for this procedure... You take care and give your son a big hug from me! Thanks, Windy
Jan 28, 2004
Anonymous
Windy
Hi Windy, The procedure next week may or may not be GERD related. We'll know when we get the results. He has pulmonary nodules (right upper lobe) and is having an open lung biopsy. I would imagine that if you call Dr. Adzick, he would be happy to recommend someone on the west coast. Pediatric surgery is such a small circle of docs that I'm sure they all know eachother. Most of Spencer's surgery was done by Hardy Hendren who trained Dr. Adzick at Boston Childrens. He has recommended a Kathryn Anderson to a friend of mine who lives outside LA. She is at LA Childrens if that helps. The main number to CHOP is 215-590-1000 if you want to check with Dr. Adzick. Patti
Jan 26, 2004
Pam from Australia pdsylva@yahoo.com
My son, Tom has had a fundo 6 months ago. It has worked to stop the reflux and life is so much better. But we have this problem with him having a vaso-vagal type reaction after eating or drinking sometimes. He gets faint, pale, lethargic and has severe regurging and then diaorrhea. After looking at a whole range of possible reasons, the gastro Dr is now thinking it may be something to do with Vagal nerve from the surgery. He has put him on a motility drug to help empty the stomach quicker. He has only been on it 5 days, so it is too soon to get excited, but I think it is working. He is finally eating. It is called Motilium. It is the only motility drug left on the market here in Australia as Cisapride and the like have been removed. I am not sure if you can get it in the US or if you have tried it but I am hopeful it is going to help Tom. I hope you find some answers. I asked our surgeon about the Stratta. He said that there was less control on how successful it was as you and to rely on scarring to get the tension right. He said the Nissen fundo had been around since the 1950's and had been perfected and was still the best option around. I agree with the others - find an excellent surgeon and at least hear what they have to say. It is good to hear things direct form the experts so you can make informed choices. Regards, Pam
Jan 26, 2004
Anonymous
Pam
Your description of your son Tom's symptoms make me curious as to whether the doc has thought of dumping syndrome as the cause of him getting faint,pale,lethargic, etc. Dumping can cause hypoglycemia though it is treatable. I'm glad to hear your son is eating and doing better with the Motilium.
Jan 28, 2004
Windy
Tom
HI Pam, Thanks so much for your insight! I am glad that you are satisified with the choice of Nissen! For so long, I really have heard only the complete nightmare stories... Anyway, I also thought about Dumping Syndrome with the symptoms you've mentioned... Thanks again for everything! Windy
Feb 05, 2004
Anonymous
Surgical options
Hi, My name is Kim. I'm located in CA. I have a son 14 yr old with severe esophagitis and have been researching surgical options. I may be able to help you some. You can email me at infotechkim@yahoo.com for further contact.
Check with your
doctor first!