Posted By Posting
Sep 01, 2004
Amie Brock
My son Justin is post fundo this past March. He is also post g-tube this past February. He is on Prevacid solutab and gets pediasure tube feeds. He eats little through his mouth. He just experiments. I have gone through 3 pediatric GI's in the Cleveland, Akron Ohio area and all have said that it is impossible to have GERD post fundo. As we all know, the research states differently. Unfortunately, while our medicine is state of the art in some areas, in this they are in the stone ages. Justin since Friday is going down hill. He is not tolerating his feeds and nights have been unbearable. I am writing to you at 4 in the morning. He is audible burping stuff up and screaming out in pain. I am trying to get in to see Dr Jeffry Phillips in Missouri (The founder of Chocobase), but that may not happen for another month. What can I do in the mean time. This little boy is a baby 15 months. I can't just let him suffer, and yet I dont know where to get help because I don't want to pit doctors against each other. Does anyone have any suggestions??? PLEASE HELP SOMEONE !!!!! Amie Brock
Sep 01, 2004
Amie, I'm sorry your son is going through this. The GIs you have seen are incorrect. It is definitely possible to reflux after a fundo. I know you know this already! From what I understand Dr. Phillips is a pharmacologist - not a peds GI. I know he's very good with ways to give meds to make them more effective (PPIs). I hope he's able to help. Did Justin have a gastric emptying scan prior to his fundo? He could be having problems with delayed gastric emptying causing his problems with feeds. Also, you could try a Farrell bag to see if that helps. He could also be having problems with gas bloat which are causing his pain. Some moms have had good luck relieving pain with gas drops too. I don't know how you are doing his feeds (bolus or continuous). Maybe knowing more about that would help people offer suggestions too.
Sep 01, 2004
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
post-fundo problems
Hi Amie, I so feel your pain! My daughter had a fundo this past February, and is scheduled to have it re-done on October 1st because she herniated it. Of course you can still have GERD ater a fundo. Have them call any number of doctors in California and they will tell them!!! I am starting to see that a fundo is more of a management tool, not a cure. All of my daughter's specialists said that fundos are tough because if you make it too tight, they can't eat and swallow or burp. If you make it too loose, they can reflux. They err on the side of loose so the child can eat, and over time it loosens more increasing their chances of refluxing. Chronic coughing or wheezing or stridor (or wretching) can pull on the diaphragm, which pulls on the stomach, which causes it to herniate, which ruins the fundo (this is what happened to my daughter). A few things came to mind when I read your post. Could the pain be gas bloat? You mentioned he has a g-tube, do you vent the gas out with the tube? If he is burping though, it may not be the issue. Does anything come out or does it go up and back down? You said it is audible...could it be mucus or are you sure it is acid? The reason I ask is that my daughter has chronic congestion from reflux and sometimes it is mucus I hear her swallowing. Obviously, that wouldn't cause her to scream in pain though. Delayed emptying is also a problem after you know if this is an issue for him? Giving our daughter milk of magnesia or miralax helps empty her stomach, and it relieves pain and minimizes reflux. Could you putting too much food at one time in the tube feeds? Because his stomach is smaller now, he may not be able to tolerate a full tube feed. Maybe starting on a smaller amount more frequently, while speeding up gastric emptying with milk of magnesia or miralax may help. (Don't do this without a doctor's approval though, I am just speaking on my own experience!) The best advice I can suggest is to insist on an endoscopy and a ph study so you can conclusively know what the problem is. Doctors here were skeptical with my daughter until they saw the endoscopy results. We set a time frame in which we expected to see a significant improvement on meds. I got them to agree that if at the end of this time frame, we would do the tests if she hadn't significantly improved. We got to do the tests. I would leave the state if it meant seeing a doctor that would take this seriously. (We almost flew from California to Missouri to see a great doctor, but at the last minute we found a great one here.) Speaking of Missouri....Childrens Mercy in Kansas City, Missouri is where we were going to go. I spoke to Dr. Ron Sharp on the phone and he is amazing. He trained under Dr. Ashcraft, who was a big guy in the development of the Thal fundo. He may be worth going to see (or at least calling)if you can't get a doctor in your area to admitt that your son still has problems. The thal is a partial wrap, whereas the nissen is a full wrap. They seem to have great outcomes over there with the Thal, although most doctors consider the nissen "the gold standard". Couldn't you just order chocobase and try it without having to go see him in a month in missouri? Since he is a pharmacologist, I would think he can help put a bandaid on the problem with some effective medicine mixture, but I don't see how he can help any further. I would think a good GI is what you need right now! How much prevacid is he on (how many milligrams)? And if the GI says he can't be refluxing, why did he give your son prevacid???? (I know the answer, I just am curious what the GI's answer is!!!) Hope some of this helps...good luck! Carla
Sep 08, 2004
Still can reflux after Fundo
My Jake is 3 1/2 years old and had his fundo in April. He has now been able to projectile vomit thru his wrap, where it comes out his nose, and still have modertate to server reflux coming up thru the wrap. Your drs are not beening truthful with you, and that is the worst part. I have A GI like that as well. We too are on our thrid GI and FINALLY he is able to get some releif from vomiting, dierreah and retching...Why??? Cause he is ONLY J-tube feed....It has been an awful experience that if I had the chance to do it over again, I would NOT...Fundo is not full proof and I was told that it was and that Jake would not have the problems he what I say to that. I hope your daughter starts to feel better soon. And sorry you were mislead. If you want to email me you can at
Sep 11, 2004
Amie Brock
Carla, Thank you for your message. Sorry I haven't responded in a while. We traveled to Missouri and saw Dr Phillips. What a wonderful man. We started Justin on the Chocobase (Caracream) and we have seen a significant difference. We did a half life test on the prevacid in caracream and saw that "J" metabolized the med much faster and that he required 4 18mg doses per day. From what i've learned, caracream isn't just used to compound, but it actually causes the prevacid to work much better. The body produces parietal cells that produce the hydrochloric acid. These cells are constantly reproducing. The caracream activates these cells, and only when activated can the prevacid bind to them and shut them down and cause the body to dispose of them. Prevacid alone only binds to a small number of the activated cells and passes up the rest. Then as soon as we send the signal that we have eaten or drank, we turn the rest of the cells back on. Since prevacid is only in a childs system for about 2 hours, it doesn't give it much time to turn off a lot of the cells. With the caracream, many cells are turned off thereby giving the child releif. It has been a miracle. Justin has been sleeping through the night and has never done that before. We ran out the the med for one day and J was back to his sleepless self. We know it is the med. We did have a gastric emptying down in Missouri and it was negative. These doctors are so far ahead of the doctors in Cleveland. Our doctors here dont even multiple dose adults. When the docs in Missouri heard this, they couldn't believe it. The only thing that i'm not quite on board with is the GI felt that J might still be wretching due to "post fundoplication wretching syndrome". He wretches because in the beginning it started out as GERD and he learned that it made him feel better so now he does it almost unconsciously. I still am not sure how I feel about this, I'm not really on board with this yet. Any thoughts??? He does also create a hiatal hernia when he wretches, they don't feel that there is a need for repair right now, Oh and we caught a gerd episode on x-ray. Now the docs here can't tell me it's not possible. Amie
Sep 12, 2004
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
post-fundo wretching syndrome
Hi Amie, I am glad that you have made so much progress in the past few weeks or so! I have to tell you that I think the post-fundo wretching syndrome makes sense. My daughter was a silent refluxer and never wretched after her fundo. I have a few friends whose kids have had fundos and the ones who were vomiters wretch and the ones who weren't vomiters don't. Granted it that's only a few people. (Note that wretching can be caused by food being introduced too soon into a swollen surgical site and can happen when the fundo is too tight.) I would send a post out and ask if anyone has heard of it. The reason it makes sense to me is that when I was in college (10 years ago) I was bulemic. You get a lot of the same effects that you do from reflux, and in fact I have reflux now as a result of it (it weakens the LES muscle). I learned a lot about eating disorders while recovering and a side effect of long-term bulemia is involuntary vomiting. It got to a point where all I had to do was think of vomiting and I would vomit. Unfortunately, I had a lot of friends with eating disorders and this happened to a few of them. The body gets used to doing it is the maybe over-simplified explanation. It's not conscious, but it's how the brain starts to respond when food comes in. I think there is a way to get over it (it doesn't happen to me anymore, although I get naseous very frequently). Did the doctor have any tips for preventing it? My daughter has a hiatal hernia through the wrap from chronic coughing and stridor. We are repairing it because we found a medication that we distribute through a nebulizer that stops both the coughing and the stridor. If you ever consider repairing the henria, I would suggest only doing so if the wretching is under control. It will only cause it happen again, and leaving the hernia there will cause him to reflux. Our surgeon told me that if a hernia goes through the wrap, the wrap is considered a failure because the child still refluxes. I am so glad you made some progress, you sound much happier. I think I am going to look into chocobase, it sounds like it could really help my daughter. Please keep me updated!!! Carla
Sep 13, 2004
post fundo retching syndrome & Justin
Carla, thank you so much for your frequent postings. The docs want to start him on Donnatol. It has atropine, phenobarbitol (in very low quantities) and 2 other meds. It's a cocktail to relax the smooth muscle and try to prevent vomiting or Justin being able to vomit. The hope is to make it impossible to continue the behavior while working with therapy to desensitize his oral cavity. It is a combo of meds with sensory integration. I learned from a teacher friend that the definition of a learned behavior is that they do it unconsciously and have no control over it. This is just like you said with your previous situation. He definitely does not enjoy it when it happens. I have the x-rays from the upper GI that was done in missouri. I would like my surgeon to take a look at them and make sure that he did not feel that the hernia repair would be necessary at this time. A second opinion is always nice. I do agree that the retching would need to be stopped first or the entire situation would repeat. Thank you for all of your time and input. Amie
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