Posted By Posting
Mar 11, 2004
Sherry in PA
12 year old- relaxed LES
My daughter just had an endoscopy that showed that her lower esophageal sphincter or cardia remains open most of the time. She had side effects from nexium twice a day so he's going to add prevacid or prilosec at night. He says if that fails we're looking at surgery. Do any of you have kids with a fundo for that reason? Any words of wisdom on either relaxed LES or fundos? We're still waiting for the biopsies. thanks
Mar 12, 2004
Carol
Sherry
Sherry, I am sorry that your daughter is going through such a difficult time. May I suggest that you get a second opinion from an excellent GI Ped., at a well known teaching hospital? These Doctors are on the ground floor of all the newest meds on (or comming onto ) the market. My son has had 2 Fundos. The first was a disaster, almost killed him. The second was done correctly, and has stopped his reflux. However, he can NOT vomit. This can be very tramatic for a bright, and otherwise healthy 15 yr. old boy.Please remember that a Fundo is major surgey, with risks and life long side effects.With the guidance of excellent Ped. GI Dr.,you may be able to avoid a Fundo. Good Luck.
Mar 13, 2004
Sherry in PA
Carol
Thanks- Do you have any specific MD or hospital reccomendations? Sarah's GI was reccomended by the GERD researchers at Allegheny and he is at Geisinger Medical Center which is nationally known. I liked him very much, felt he listened and beleived everything we told him. I don't think he'll jump right to surgery, but I'm wondering how meds can make a sphincter close. Can they? Does a relaxed LES stay that way forever? I haven't been able to find much out about it. As a nurse, I know that fundos can be a disaster, but I also know they've improved quality of life for many...so I'm really on the fence about this and scared of such a big decision.
Mar 13, 2004
Carol
Sherry
Sherry, I really don't know the answers to most of your medical questions. Thats why I have learned to always go for second and sometimes third opinions. We love Dr. Alex Flores at Floating Hospital & CHOB's both in Boston, MA. He is one of the very best pediatric GI diagnostic in the world, and also a kind man. Also very good is Dr.DeLorenzo at CHOP's( Pittsburg). I also suggest doing as much research on your on, so that you can be well educated in all areas that affect your daughter's health. These sugestions have worked for me.
Mar 15, 2004
Jenni from Perth, Australia
Fundoplication Surgery
I have had 2 children with severe GERD. My now 8 yr old had laproscopic Nissen Fundoplication performed at age 4 and we are absolutely thrilled. No amount of medication was able to budge his oesphagitis. Yes it is true, he cannot vomit but he can burp. When he gets a tummy upset he tends to try to retch for about 20 mins & then it just stops. Next day he gets diarrhorea. That has been the pattern to date for him. For my son, the oesphagitis made the final decision, but if I was faced with a life-time of medication vs surgery, I would choose surgery. But at all costs, you do need to find a fantastic surgeon to ensure the wrap is the best that it can be for your daughter. I know of 5 other children (beside my own) here, who have had fundo's performed by a very competent surgeon and all are completely happy. My 4 yr old daughter is scheduled to have a fundo in 3 weeks time. Her biopsies were clear but her LES is also lax - my GI has stated that meds will not improve muscle tone, they will only help to control symptoms. What age was your daughter when she started refluxing? Have they ruled out motility issues? It is a big decision that you have to make for your daughter but one that you will know is right when you eliminate everything else and when you meet the right surgeon. Please respond if you have other questions.
Mar 16, 2004
Sherry in PA
Jenni- re:fundo
Thanks, I appreciate all the input, both positive and negative. It's a big decision and I want all the info I can get. Sarah was diagnosed at 7 1/2 after a wretched infancy and chronic complaints after that. She was treated without any testing and released from care. The GI never mentioned that all her complaints were related to GERD so I spent years dragging her to specialists trying to figure out what was wrong. None of them caught on that she was still suffering from GERD until 3 months ago. Now she has a good GI but we've already "brought out the big guns" (40mg nexium) and she had side terrible side effects so she's back to 20mg. It has helped. She started regurgitating in Dec. and that stopped after a month on nexium. She still has pain from reflux, particularly at night, so the GI is going to add a pm med after he gets all the biopsies from the scope back. We haven't gotten into motility issues yet, but I did mention it was a concern at her first visit. Does relaxed LES cause motility problems? Thanks for your input
Mar 17, 2004
Anonymous
LES & Motility
Sherry, I understand the two to be independent issues but I would strongly recommend you speak with your GI for a correct answer. A question I have always asked is "can they rule out (without question) any underlying motility problems". I have just had a barium swallow performed on my daughter (at the surgeons request), even though the Gastroenterologist said it wasn't necessary. It was all clear but it really is a process of elimination. Good luck! My email is: mackay.gs@bigpond.com.au Jenni.
Mar 19, 2004
Emmysmom
RE: Nexium side effects
I am curious what type of side effects you noticed on Nexium. My daughter has a myriad of problems right now, but her GI assured us none of them are related to the Nexium she is taking. I am curious, though, as to what you've seen. Thanks!
Mar 19, 2004
Sherry in PA
Nexium side effects
She's doing ok on 20mg, but on 40mg she had chest, arm, back, and leg pain to the point of having trouble getting up the stairs. She also had bad headaches and abdominal pain, but it's a toss-up if that was related or not since she has those symptoms often anyway. She also often gets chest pain with the reflux, but she said this chest pain was different than what she usually gets. As soon as the doc backed her down to 20mg, the pains went away. If you pull up Nexium's website and look at the possible side effects, you'll see that they are many. Overall, though, I'm glad she can tolerate the lower dose because it helped her reflux significantly and now that zantac has been added at bedtime she's even better. Hope this helps. What kind of symptoms is your daughter having?
Mar 21, 2004
Emmysmom
Side effects
Emily is five 1/2 years old and has had reflux since age 3. We have been unable to control it with meds. She has been on Zantac, Prevacid, Prilosec, Erythromycin, Carafate, Miralax, etc. My daughter had dystonia from Reglan a few months ago which ceased when we took her off the med. She was only on it four days when we noticed the problem. She was also on Celelxa and Nexium for four months when we started noticing night time twitching/involuntary muscle contractions. She then stopped the Celexa, and Nexium. After two weeks we put her back on the Nexium, because the problem has not stopped. She has seen a neurologist who thinks it is RLS (Restless Leg Syndrome), but he ran numerous blood tests and has ordered a sleep study to be sure. I really just wondered if the Nexium had caused any muscle twitching because the web site didn't mention it and our drs didn't think so but so much of this is uncharted territory with these meds. I just like to find out all I can. Thanks for the info.
Mar 22, 2004
Sherry in PA
Miralax
You are so right about the uncharted territory. I really like Sarah's Pedi and GI, but although very willing to explore with me, there's still so much they don't know about GERD and associated conditions. I was wondering why Emily (Oh, we also have an Emily that we call Emmy!) is on miralax. Is it simply constipation or is it for motility? I ask because Sarah's GI thinks motility may be a factor and she's definately currently constipated. About 3 years ago, before we knew we were dealing with GERD, I took her to a diagnostic clinic and the doc diagnosed her with obstipation (like constipation but chronic). He did no testing and barely listened to me so I thought he was a quack, but now I wonder if that was just a small part of the picture. Obstipation is often seen with delayed gastric emptying but it's hard to find info on it. Sorry so much info, but I'm hoping to find people with similar problems. Thanks
Mar 22, 2004
Emmysmom
Miralax and constipation
We had a motility study done last spring, and they did find a mild delay in Emmy's emptying. As well, she always has to strain when going to the bathroom. The Miralax worked too "well" for us and Emily was having difficulty controlling her bowel movements so we had to stop taking it. The Celexa really helped this problem, but since one of its side effects is involuntary muscle contractions we've had to take her off of that also. Although the Celexa is an anti-depressant, it has great GI side effects in that it relaxes the entire GI tract. Having been through so much in the past few years, Emily has also developed quite a "personality" :) So the Celexa helped her there too, but unfortunately, as I said, the twitching caused us to stop that med. I agree that having good docs is so important. We found a great neurologist, have a wonderful pediatrician, and are on our second GI. He's okay. The first was quick to push surgery. This second one is big on drugs, even one's from other countries, but since Emily's had such side effects and not much success, we may be dr. shopping again. Again, lots of info, I hope this helps!
Mar 24, 2004
Anonymous
I took Protonix and Aciphex (at different times). I didn't notice much of an improvement with either, so they increased my Protonix to 40mg,twice a day. I got very sick! I was told repeately that my side effects are very rare. But, they were there. You could not pay me to take another PPI. I developed horrible reflux. Like your daughter said it was reflux, but it felt different. It was much worse for me. I developed chest pain, coughing, couldn't bend over.... I couldn't eat and lost twenty pounds. It was the sickest I had ever been. Don't let the doc tell you that her symptoms can't be related to the meds. You can always try a trial period of taking her off the Nexium. It took a few weeks for my system to heal, but while I still have reflux, I feel much better. Incidentally, my daughter takes Prevaid and does very well with it. So, I'm not saying PPIs are bad. But, they are for a small population of us.
Jul 13, 2004
Cheri
My son was on Nexium because nothing else worked. The side effects for him were horrible. He got an impacted bowel. He had to be in the hospital to clear it out. The doctor told me no other children had this side effect. They put him back on Prilosec which did not work. We tried the Nexium one more time. He was impacted within two weeks. We are now on Prvicid.It is not working. Surgery is the next step for him.
Apr 27, 2004
Leonie, Ipswich, Australia
Fundoplication
My son was 2 when he had the Nissan Fundoplication. He had one operation where a 360 degree wrap was performed. This was too tight for him and gave him excruciating pain. The operation was done again with a 290 degree wrap and was much better. He went off his medication in July 2003. He was symptom free until a month ago and is now back on a medication to reduce his stomach acidity. He still cannot tolerate a lot of food textures eg. only eats puree fruit, smooth yoghart etc. We were told that sometimes the fundoplications don't last.....I hope we aren't heading down that road again. Good luck with your daughter's operation Jenni!
Apr 30, 2004
Jenni Mackay
Kayla's Fundoplication went well - 4 weeks post op today.
Leonie, Thank you for your well wishes - that was very kind. Isn't amazing how you can meet someone in your own country via this wonderful site in the USA! Kayla's surgery went exceptionally well and we are four weeks post fundo today. Prior to surgery her reflux had worsened to the point where she stopped eating altogether. She would take liquids so she survived on S26 Gold toddler formula for the last 2 months until we could get her to surgery. We decided on the fundo again for a number of reasons: the success of her older brothers fundo, the fact that her LES was lax, the GI stating that he did not know how else to get her back to eating other than to fix the root of the problem that caused all this in the first place, the fact that motility issues were ruled out and that all of the PPI's had stopped working for her. Kayla is now eating again and for the first time in her life she is really enjoying food. She saids "mummy mornings come really quick now"! and is so happy that the "fluids" as she called them can no longer come up. Full blown texture phobia's developed towards the end but they are dispersing really well and we have even succeeded in getting a toothbrush in her mouth for the first time in 3-4 months. She is sleeping all night and has done since the last night in hospital. Its so lovely to watch her in a really deep sleep for the first time ever. I am feeling guilty writing all this though knowing that your son has been through so much and now his symptoms have returned. Where did your son have his two surgeries? If you ever want to get another opinion or just talk to another surgeon, I cannot recommend Dr Colin Kikiros highly enough. He did both my childrens surgeries. He is such a lovely, kind and caring man. He's really down to earth and I am sure he would be more than happy to talk to you. I have been running a reflux support group here in Perth for a couple of years, so get to meet most of the ones that end up going to surgery. I have not heard of anyone to date that has not been pleased with their kids fundo outcomes. In fact all of the mums that I have spoken/speak with have been thrilled with what he has done for their children. He is an exceptionally clever surgeon and I cannot recommend him highly enough. He is on the Board of Paediatric Surgery and was actually just in Brisbane. We had to wait for his return for him to do Kayla's surgery. Leonie, my email address is: mackay.gs@bigpond.com.au I am seeing Dr Kikiros in a couple of weeks for Kayla's follow up - if you have any questions feel free to email me. Jenni.
Check with your
doctor first!