Posted By Posting
Jun 29, 2004
Sherry in PA
LPR and Fundo
Hi, I haven't posted in a while since we've been on a whirlwind tour of specialists. Now that we have some answers, I have lots of questions. My 13 year old , Sarah, was diagnosed with reflux and chronic sinusitis with multiple allergies and asthma. To make a long story short we now also know that she has IgA deficiency contributing to frequent infections and she has a very reddened and irritated larynx. She has had bad reactions to 40mg nexium, but 20mg isn't helping. Now the GI has ordered a gastric emptying study and wants to talk surgery. Anyone out there have experience with fundo for LPR ? How do I find out a doctors success rate with surgeries? What questions should I ask? Any other tests she should have? (She's had ph, endoscopy with biopsies etc.) Also she had a "borderline" ph study and the ENT said that's not uncommon with LPR. Why would that be if the acid is going higher than the esophagus and irritating the larynx? I would appreciate any insight or advice. Thanks
Jun 30, 2004
ptyler
A link to try
Hi Click on GERD at the top of the page and then click links. You will find a link to the Wake Forrest Center for Voice Disorders under the Related Disorders Section. There is an entire website devoted to voice disorders and reflux which you may find helpful as there is some information on LPR. Take Care, Pam
Jun 30, 2004
Carol
Sherry
Sherry, I have found that going to a top teaching hospital, and asking for a senior Pediatric Surgeon helps. I also asked many other Drs. for their choice if it was their child going into surgery. We didn't follow any of the above advice for my son's first Fundo, with almost fatal results. For the second Fundo we were much better informed. I don't know how to actually research a surgeon's tract record per say.I think there is a site on line where you can see if there have been malpractice suites against him. Some questions that we asked the second time around were: How many Fundos have you preformed? Where did you train? How long have you been pracicing? How long on staff at current hospital? Exactly what type of Fundo do you plan to do(ie. full or partial wrap)? What are your procedures before closing up the patient? Example, how many tests do you preform to detect accidental perforation? Injecting dye and air into site to see if any air bubbles( which would indicate a perforation). Our first surgeon only did a visual check before closing up our than 8 yr. old son, which meant that he totally missed a perforation! As a result our son got septic.What are the after operation procedures? What is the RN to patient ratio? Not enough RNs mean complications could be missed. We were very impressed with Dr.Scott Adzack at CHOPs. He was very experienced, careful,skilled and careing. We will return to him if our son ever needs surgery again. I noticed you live in PA., if you have access to CHOP's, it is an awesome hospital. We travele out of state to go there, and it was well worth it. Just remember to research and ask questions. If you think something is amiss, speak out. You are your daughter's advocate. Good luck.
Jun 30, 2004
Sherry in PA
Thanks!
Thanks Carol! That's really valuable advice. I'm an RN, but when your own child is sick, you're not always as clear-minded. I'm printing out your answer to bring with me.
Jul 02, 2004
Carla Gorecki
fundo for LPR
My daughter had a fundo 5 months ago. She had GERD and LPR, although I didn't mention LPR specifically in her story (Chelsea's story). I think a person can have one without the other, but she had damage to both her vocal cords and larnyx, and her esophogas. She has done well...but she is refluxing again...already! She had 4 great months, then things changed pretty drastically one week. She may have re-torn her hiatal hernia or loosened the wrap. Although we don't know why yet for sure (we are waiting for more tests), we started her on Reglan and Prevacid, and she is doing really great again. The fundo seemed to make the reflux that is left manageable (so far!), whereas before the medicines did nothing for her. I agreed with all the questions that were posted for the surgeon; just an FYI, I asked the surgeon directly for his success rate. He was honest. With failures, I asked what contributed to the failure; the fact that he knew showed that he cared a lot and tried to learn from it (He only had one). I also asked them what they do different as a result of that failure to keep it from happening again. With success, I asked what level of success was accomplished- success can mean different things to different doctors. I read studies on the two wraps, and was pleasantly surprised to find out that the surgeon we used (In California) had read the same studies. We actually discussed them as well, and him reading them showed he was actively trying to learn more to perfect the technique. The fact that they are willing to answer your questions with ease and confidence is a great sign as well. Some doctors wont even talk to you! I also asked nurses at the hospitals and other doctors. They can give you some pretty great feedback. Good Luck, hope it goes well!
Jul 02, 2004
Sherry in PA
Carla
Thanks, that was really helpful. I love this message board! Does chelsea also have a G Tube? I'm wondering if surgeons pre-plan for symptoms like gas (since burping is usually not possible post fundo) and nausea (since retching/dry heaving can unwrap fundo. Any insight?
Jul 05, 2004
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
Post fundo-gas,wretching, g-tube
No, Chelsea does not have a g-tube. It was never even mentioned because she was diagnosed at 20 months, and had the fundo at 22 months because of she was in a "state of crisis". Before she was diagnosed, she was continually treated with steroids for stridor, and the steroids made her gain 9 lbs in 7 months. This put her in the 20th percentile, so failure to thrive wasn't an issue. Although at 1st thought, the steroids sound like a blessing because it kept her weight up, it actually contributed to the narrowing of her airway that is permanent now! So anyway, to answer your other questions.....gas/inability to burp and delayed gastric emptying was a BIG problem for Chelsea for 4 weeks after the fundo. The whole digestive process was slowed down and as a result, the food sat in her stomach for long periods of time. This would make her unable to have a bowel movement, make her feel bloated and gassy, but the gas had no where to go because she couldn't burp. So the only thing we could do is help it come out from the bottom. This is part of what contributes to wretching (getting really full in the stomach), but fortunately this part wasn't a problem for Chelsea. All of this can be really extreme in some cases, so you do want to discuss it with your surgeon and GI before and after surgery. This is everything we did: 1. Part of what probably kept her from wretching is the diet we had her on. Keep in mind though that some kids will wretch no matter what. For Chelsea,we fed her very small portions of food. We started with full fluids for 5 days (jello, milk, juice, ice cream, popcicles) then we did pureed foods for 6 days (like baby food jars, but we pureed regular food ourselves). We felt that the longer she ate like this, the easier it would be for her to eat and begin to trust food again (this was a huge issue for Chelsea). The consistency made it so that swallowing didn't hurt her because the swelling needed time to go down. Food of this consistency is also easier to digest. We went to soft foods for 8 days, and didn't start real food until 4 weeks after. By that time, she did really well with it. 2. A life saver for us was milk of magnesia and glycerine suppositories. She took milk of magnesia everyday, and that helped the digestive process move a long. The suppositories were for emergencies when she was in severe pain with gas. It helps relieve whatever is trapped in the intestines. Mylicon only helps with gass bubbles in the stomach; it doesnt do anything for gas in the intestines. 3. We also put her back on Prevacid because her stomach was still producing too much acid. 4. We had to give her Benadryl to help her sleep and Tylenol for pain. Motrin tends to cause pain in babies who have reflux and esophagitis. (We didn't know that until right after the fundo, so it's just an FYI.) Then, at 4 weeks post-op, she burped and it seemed as if her body started working again the way it is designed to work. She was able to go off the milk of magnesia and the prevacid and didn't need anymore suppositories. She stopped needing help to go to sleep and stopped needing pain relievers. We had 3 really great months from that point on. She has since started refluxing again, but so far, it is very manageable, thanks to the fundo. About the g-tube...to my knowledge they do not put one in for the sole purpose of relieving gas and minimizing wretching (but for kids with one, it can help with the gas- it didn't help with my friend's daughter's wretching---only small meal portions helped with that). They try to manage it with what I listed above. I think it is primarily used for a child needing to maintain weight, when it has become a serious issue. Ask your doctor though! Hope all this helps, write back if you have more questions! My email address is tccgorecki@cox.net Carla
Jul 05, 2004
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
one more thing for Sherry
We were given suppositories to stop wretching if she ever started from a stomach flu or something with the sole purpose of protecting the wrap. It is the same kind they give kids with the flu who are vomiting. We haven't had to use them but it's comforting to have on hand!
Jul 07, 2004
Sherry in PA
Are these nasty side effects temporary?
I was just wondering if the fundo can cause permanent side effects or if they usually resolve. Also, you mentioned that Chelsea ended up back on prevacid. How did you know she was refluxing? Sarah's only current symptom is mild sore throat and yet her larynx is very reddened and swollen. I'm wondering if she's just going to have to have periodic scopes for the rest of her life. She's scheduled for UGI, esophageal manometry and gastric emptying study before we decide to discuss surgery. Sorry for all the questions, it's just so overwhelming and scary...Apparently Sarah's situation is atypical, which makes it even harder to get info and make decisions...
Jul 08, 2004
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
Nasty Side effects (for Sherry)
From what I read, these side effects, and the others that are possible, may be temporary or permanent. It depends on the child and their specific problem. Beth Anderson told me that for a lot of children, the fundo trades one set of problems (reflux ones) for another set of problems (fundo ones). But for some, it works very well. You have to weigh it for your daughter. I know that is hard when you don't know what the fundo outcome would be for her, but can you (and her) live with how she is right now? Thinking on those terms is what decided it for us. We couldn't go on the way she was before. Yes, the fundo was worth it for us, even though she is refluxing again right now. If she evntually gets to the point that she was at before, we would do it again. We are hoping that this early treatment will help us avoid that this time. We knew she started refluxing again based on the obvious symptoms that had returned. We caught it right away and began treatment. She had 1 hard month of recovery, 3 really good months, and this past month hasn't been that great (although it isn't as bad as before). It's been 5 months exactly since the fundo. I spoke to 5 different specialists that are involved in Chelsea's care (the GI and his nurse practicioner, 2 different ENT's, 1 Allergy and Asthma Specialist and his nurse practicioner, and the Surgeon that did the fundo) and got a few perspectives on what could be happening. 1st, the GI's office said that they see many kids have a honeymoon period after the fundo where they do really great, then they reflux again,then it goes away by 6 months post-op. They said that it isn't completely clear why they see this happen so much. What seems like the most reasonable response to them is that the organs shift around after the surgery to get into their permanent spot. During this time, it disrupts things- hence, the reflux. After the organs get into their permanent spot and heal, they see a lot of kids do well again. All the specialists involved said that fundos are really hard to perform because if they make it too tight, the child can't swallow; if it is too loose, they reflux. It is extremely difficult to get it just right, and when in question, they err on the side of loose to be safe because too tight is life threatening. They do insert a tube into the esophagus to guide them on how tight to make it. Unfortunately, repeated coughing and gagging can make it loosen (not just wretching), and they know that just normal living makes it loosens over time, which is why they can burp and eventually vomit if they need to. This gradual lossening is good, because that's when the surgery side effects are supposed to fade, but extra loosening from wretching or coughing or gagging can make it so they can reflux again. It is so tricky!!!!! She could also have a new hernia....this can go through the wrap and make the wrap ineffective even if it is still intact. An obvious problem for Chelsea is delayed gastric emptying. It isn't as severe as right after the surgery, but it is still an issue because it could be causing her to reflux. (Assuming that I understand this correctly), when the stomach takes too long to empty, the pressure builds up inside because there is only so much room inside there to store food. As it runs out of room, that pressure pushes food up and down in order to try to relieve some of the pressure. Food going up, as you know, is reflux. If it has a hard time going down it sets it up to go up more. Reglan worked really well for her for the 4 days she was on it, but we had to take her off of it because she had neurological side effects from it (very rare, but apparently my child is in the rare group for everything!!!!). Reglan empties the stomach so that there isn't anything there to reflux. We know because of how effective the medicine was on her that this is her biggest problem. Sorry this is so long, I am just wanting to give you all the info I have gotten in the hopes that it helps. Unfortunately there isn't a clear cut answer, doing the fundo and not doing the fundo is a risk at some degrees....there are good chances that it will be effective, but there is a chance that it won't be. You have to decide which is best for your child so that you don't regret your decision regardless of the outcome. That is really hard isn't?!?!!! Write back if you have more questions..... Carla
Jul 31, 2004
Evelyn
Fondo G/J tube
Brandon is now 14 yrs old and has suffered from gerd all his life. 22 aspirated pneumonias and constant choking. Fondo has been mentioned many times but I am affraid that if he is choking due to motility problem in his esophagus the fundo will make his problem worst. Right now he has had 4 surgeries in this past month alone due to choking. He was up for a Fondo this month prior to this emergency, that is out the window now. Can and will a Fundo really work in this type of cases? My son has a G/J tube for feeding. He was devastated to say the least. But it was better than the TPN feeding. Will a G/J tube be better than a Fundo to ease the esophagus for chronic cases like my son?
Jul 26, 2004
Amie Brock, Medina, OH
Wretching, G-tube
My son Justin is post fundo March 10,2004. He is still wretching after 2-3 feeding boluses per day which causes us to empty the feed for fear of aspiration. He can squeek small amounts of fluid through the fundo. We have never been able to stretch his stomach past 4 ounce feeds. He wretches all the time. He is still having alot of acid episodes with arching and screaming. He is still on the Prevacid. Has anyone else been having problems with high acidity even post fundo and prevacid??? Is anyone else having lots of problems with wretching and small feeds??? What have you tried????? Any success stories????? HELP!!!!! Thanks, Amie Brock Medina, OH
Jul 22, 2004
Kimberly
G-tube
Hi, I am new to this site....My son, who is 22 months old is scheduled to have fundoplicaton surgery August 2, 2004. The surgeon's have told me they will be putting in a G-tube to help with gas release and possible vomiting. I live in Detroit Mi. Just thought you would like to know that in some places they do plan for that type of thing.
Check with your
doctor first!