Posted By Posting
Oct 16, 2004
Christine
Having Jake's Fundo taken down??
Well here we are 6 months post op, and he is soley J-tube feed on 24 hour feeds. He still vomits, but not the formula, the dark green bile. His diarreah is getting better, and is having formed poops, but everyonce and a while he will have diarreah out of now where. We have seen a new GI Motility Dr, and we had an our 5th UGI since April, of course this one showed the fundo to be intacted and no reflux, two months ago is showed the fundo to be slipped and moderate to severe reflux. So I don't put to much into the UGI's. Jake is going to have Manomerty tests done in the next month or so. My husband and I have decided that if these tests show everything to be fine, than we want to talk with our surgeon, and GI's about takening the fundo down. They all know I have mentioned this before and they don't think it is a good idea, that he would be worse. But how much more worse can he get??? He still vomits, he still refluxing, except now, he can not take anything by mouth. If anything goes into his stomach, his belly blows up, he feels sick, vomits and has diarreah. I refuse to let him live like this anymore. Has anyone had there child's fundo taken down? Any advice on this would be so appericated. Thanks Christine Jake 3 1/2 years old
Oct 16, 2004
Christine
Forgot to mention..
That Jake got worse since he had the fundo. That is why we are considering this. Sorry I forgot to add that in. Christine Jake 3 1/2 years old
Oct 18, 2004
Sam Piney
Fundo in kids
Fundoplication is not the answer in children. I am a family practitioner and I see so many like your child. Believe me Prevacid in Caracream or Prilosec in Caracream or the new product called Zegerid is the answer. Absolutely take down the fundo. Dr Piney
Oct 18, 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
fundos
I am so sorry that this has been Jake's experience. I think that if the fundo has caused more problems for your son than he had before, taking it apart makes sense for him. Although I am sure Dr. Piney is a respectable doctor, I disagree with the blanket statement that fundoplication is not the answer in children. Clearly it isn't the answer for a lot of children, but it IS clearly the answer for others. My daughter has been extremely benefited by her fundo and has not had any of the common complications complained about on these boards. Yes, it isn't easy and it isn't a perfect surgery; and no, her health still isn't near perfect....BUT it is SO much better than before. It may not have cured her, but it has helped her tremendously. Having the fundo was the best decision we made for our daughter and I am SO glad it was an option for us. How unfortunate it would be to have medication be our only choice. Medication didn't work for Chelsea. I hope Jake gets better regardless of what you end up doing. Please let us know how it goes!!! Carla
Oct 18, 2004
Susie
I agree with Carla
I agree with Carla completely. It depends on the child. What a trajedy it would have been without the fundo since medicine didn't work for our child either. Shame on Dr. Piney for making such a blanket statement. I hope Jake gets better.
Oct 18, 2004
Sherry in PA
Dr Piney
Many of us are frustrated moms who have spent years on tests and medications without resolution of a problem which robs our children's happiness. As this is a website for information and comfort, I won't go into the details of the dangers of untreated GERD...so what would your alternative be for those of us whose children have not responded to the strongest PPI's?
Oct 19, 2004
Anonymous
Dr. Piney
I don't post here often because of Spencer's situation but I am posting today because Dr. Piney's comment is very upsetting to me. Dr. Piney, While I agree that fundoplication isn't the answer for most kids, I do know that there is a population of children who have no other option other than fundoplication surgery. My son is one of those children. At just under 4 years old, he had obstructive apnea severe enough that his oxygen saturations dropped below 70 multiple times in one night. He had aspiration pneumonia multiple times with the first being at age 4 1/2 weeks for which he was on a ventilator in the PICU. He also had severe esophagitis that didn't respond to any of the medications available. His esophagitis was so severe that he had developed Barretts esophagus. He didn't have another choice. For him and other kids like him, no amount of any kind of PPI is "the answer". Patti
May 24, 2005
Anonymous
What is take down the fundo
Ruth from Minnesota, I am new to this web site and an not sure what taking down the funo. My daugther had a nissen fundoplication at three months and it came undone. We were told that the nissen was a permanet condition. Thanks Ruth
Oct 18, 2004
Christina
Fundos
I have first hand experience of a fundo that wasn't all I thought it would be, but on the other hand Jamie's refluxing had caused food and liquids to go into his lungs which never caused pneumonia(I don't know why), but did cause significant damage to his lung tissue. We had no choice, but it was still a nightmare. His vomiting started 3-4 weeks post-op and continued for many months. We had refused a G-tube so I was in a race against time. We found a manual therapist who was our "miracle man." He worked with Jamie to stimulate his vegas nerve to help in the swallowing process. I used a big red therapy ball to "bounce" him after each meal to help get the gas out. We are now one year post-op and I can finally say things are going well for us. I was at the point of no sleep, no satisfaction and worst of all no hope. We still go for Integrative Manual Therapy 1x per week for maintenance and Jamie loves his treatment time. If there is anything I can do to help, even just someone to listen please feel free to E-mail me @ cmc8188@aol.com. I do know because I've been there too. Best of Luck. Christina
Oct 19, 2004
Beth Anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Many other conditions mimic reflux
If your child doesn't get a fair amount of benefit from either high doses of PPI or a fundoplication, I would STRONGLY urge you to read the section on our links page about conditions that look like reflux. Most of the conditions described there are rare. That means that it is unlikely for a child to have this condition - but it is NOT impossible. If you are getting a partial response to treatment but lots of horrible side effects, there might be a variation of the treatment that would work - like switching brands of PPI makes an amazing difference for some children. If you tried this with no success, you might actually be looking at some cousin of GERD like EE or gastroparesis. You are also welcome to call the PAGER line and ask to speak to one of the most experienced volunteers. We aren't doctors but we know just enough about medicine to ask a question that might lead you to the right answer. Over the years we have talked to enough parents whose kids didn't respond to medicine that we have developed pretty good instincts and might be able to give you some terms to investigate. We call this Zebra Hunting. Since we are not doctors, we can't shoot the zebra for you, but we might be able to help you see it hiding in the striped grass. Getting no response to the most aggressive treatments is extremely frustrating and depressing. It can put a huge strain on the whole family. We can also help you by putting you in touch with other moms who have been to this level. We have several volunteers who have been in this position. Good luck and take care, Beth Anderson PAGER Director
Oct 19, 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
other conditions and fundos that turn out good
While it seems common on these boards to see kids with other conditions in addition to reflux, I want to clarify that all of those things were ruled out for my daughter and meds were still not effective enough. I am so grateful for all the info on this site regarding GER and the other conditions that look like it. However, I also see A LOT of negative information regarding fundos on the boards and feel it gives desperate parents a sometimes one-sided view. I know that many children have had very bad outcomes with their fundos, and I am always so sorry that was the case. I realize that most parents that are motivated enough to write on these boards are those that have had such negative experience that they write for the support and want to help others avoid the same experience. Our experience with reflux was negative too. However, the biggest negative part was because she wasn't diagnosed until 20 months old. It's negative because she suffered for so long without a doctor acknowledging she had a problem. As a result, she has scarring to the already narrowest part of the airway. I realize that every child's battle with reflux is different. That's why I feel it so important for parents to see the good and the bad when deciding for or against a fundo. For my daughter, it was not an option; for her, a fundo was GREAT. It was the biggest positive part of her battle with reflux because she was given relief. I want parents to know that not all fundos turn out bad. It certainly is not easy, don't be fooled....but reflux that doesn't respond to any other treatment isn't easy either. We weighed our pros and cons and made what we know to be the best decision for our daughter. If it turned out bad, like Christine's son, than by all means I would undo it. The point is that you do what is best for YOUR child. Reading Patti's post regarding Spencer made me so proud. If anyone wants to read about a long difficult battle with reflux and fundos, then read Spencer's story. I cry everytime I read it. To know that his mother still says that fundo was the best option for her son, I feel gives the perspective that I am trying to point out. It ISN'T easy, it ISN'T a cure all, it ISN'T a one time thing-then your done-no more reflux forever; BUT for some kids, even if it is only a small amount of kids, IT IS what they need to control it enough that their quality of life is improved. My daughter not refluxing equals my daughter breathes freely. She isn't in ANY pain. Those are the most significant differences we see. Again, my purpose in this post is to try to give some positive, but balanced, light on fundos. I needed to get it off my chest!!! I was so scaired going into my daughter's first fundo and would have loved to have read on these boards that they are not always bad. I hope it can offer some encouragement to other parents that are forced with the dreadful choice of deciding for or against one. Carla
Oct 19, 2004
Christine
My 2 cents on this.
While I DO NOT agree with Dr Piney's post, I want to add that I also do not think Drs inform parents about the fundo. I cringe when I read posts from moms where there child is 6 months old or 16 months old and had a fundo done cause they vomited a couple of times, no Ph Probes or scopes were done, and they only meds they were on was reglan and zantac, and they had not breathing or life threating issues at the time. I say this cause I have meet a handful of moms that fundos were done on there children, and it was the second thing the Dr reccomeded in the *cure* for reflux, and now these poor kids are suffering horriable. I do strongly feel that fundos are being done on kids before ALL intervention is done. I waited three years before I even or the Dr even mentioned it to us. Where I get upset is that I find out now, that there is a test that could have been done BEFORE the fundo was done, that might have showed Jake was not a good canadaite for the fundo. Jake meet 3 out of the 4 criteria for the fundo, which is what made our descsion a little eaiser. My opioion is that parents that are considering a fundo, needs to know while it does save lives of children, like Spencer, ( I know Patti from another board) and many other kids out there, I think some Drs are really quick to throw the word "Fundo" to parents before time is given. I am not taking about breating issues or severe damage. I know I wish I had read some of negative stories before I went ahead with this. But that is the past, and now I have to work on fixing my child, and I respect each and every one of you for your replies on this...Minus the Drs!! Christine
Oct 19, 2004
Susie
Some fundos done too soon
I agree with you Christine. Fundos should not be considered until all other treatments are exhausted and/or serious complications are resulting without the fundo. Each child is different. Unfortunately, I too have heard many stories as well where doctors suggest it right away for a quick fix. My daughter is two months post fundo and is doing well. She started eating baby pasta in soup with crackers and toast today (along with her nighttime g-tube feeds). And for the first time is not throwing it up like she did the first four weeks post-fundo. We have had to move very slowly with her food increases. As of yesterday, we were only giving her liquids and g-tube feeds. I don't expect it to be easy, but I think we made the right decision. I am grateful that her team of five doctors were all opposed to doing the fundo on my daughter until we reached a point where they all thought it was the only option. I did a lot of reasearch and read a lot of horror and good stories. I am prepared for this to be a long haul if it need be, but compared to the summer months where her quality of life was non-existent, we're gaining a little each and every day. I am curious about what the four pre-fundo test criteria are. No one mentioned them to me. I am still irked by that doctor's comment. How blantantly ignorant! Susie
Oct 19, 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
I am shocked that some doctors recommend it that way!!!-Susie and Christine
I live in Southern California, Orange County to be specific. Doctors here, in our expereince (and we know a lot of them!) are VERY conservative with fundos. My daughter had severe breathing problems and scarring to her airway, and they still hesitated because they have seen quite a few go bad. For such a big surgery, I am so shocked, to say the least, that some pediatric doctors would just suggest them so quickly when the reflux was not a life threatening disease. I was under the impression that all doctors had the same attitude as the doctors do here. Thanks Christine for sharing that, I really had no idea. It gives me a more balanced perspective on this issue! I do agree it should be a last resort, and I agree that both the good and the bad should be shared. I don't understand why it seems a lot of kids vomit after fundos. I don't understand how that's possible unless the food never enters the stomach. According to our surgeon if that happens, there is too much swelling for the food to go down. Now my daughter hasn't had any of these problems and I see how fortunate we are. But what am I missing in understanding this? Why does it happen? Susie, you mentioned your child vomited for 4 weeks after and 2 months later is not on solid foods yet. How does the surgeon explain that? It's been 2 and a half weeks and my daughter is on soft foods and has never wretched. This is why I don't get it!!! Everything I have read about fundos contradicts a lot of stories on here. I am just wanting to understand. Out of curiosity, Christine, were you talking about the gastric emptying scan as a test that would have indicated he not be a good candidate for a fundo? Carla
Oct 20, 2004
Susie
Carla
Carla, you're right. Isn't it strange how children react differently to fundos and how doctors treat things so differently? My daughter had a set back after her fundo. The ped. surgeon kept pushing her to eat after the fundo saying that her vomiting was just behavioral. She vomited at every meal for four weeks. He put her on a regular diet after two weeks, saying that she would learn to stop vomiting. He kept pushing until she had a food blockage from so much swelling. I also believe that the food wasn't even going into her stomach. After the second surgery to remove the blockage (four weeks after the fundo), I switched her care to our ped GI who is more conservative, and better with post-fundo diets. Surgeons don't have the feeding experience that ped GIs do after a fundo I learned. The ped GI wants to be sure the swelling is down before she starts eating again to avoid the vomiting and make sure that eating is a good experience. I'm glad since I see such a huge improvement with my daughter. She started crackers, toast and soup with pasta yesterday and is just thrilled and excited, no wretching or vomiting. She still is g-tube fed at night. I too was surprised that fundos were offered so soon for some, but I saw it happen. I'm glad we waited until we all felt like we were out of options. At this point, we feel like it was the best thing we could have done. We're still healing though. My other, 5 year old GERDling is doing great with only medicines. I too am still curious Christine about the test that indicates whether a child is a good candidate for the fundo. I wonder if my daughter had it.
Oct 20, 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
Susie
I don't understand why the surgeon would have forced her to eat like that. Our surgeon would have freaked out if she vomited once...it can take the fundo apart if they do it too much!!!! He has always told us (we have done this twice) if it comes out, it never went down. If that happens whatever you offered her, you offered her too soon. He would say take a step back for a few days and try again. I think our surgeon may be a rare find compared to stories I have heard about other surgeons. He is relatively new to this, so not conceited. He reads every study, evaluates everything, confers with other surgeons and works with one that is very experienced and has a high success rate. They are the most humble surgeons I have ever met. He also has a two year old that was a former refluxer (he outgrew it) so that may be where his compassion comes from. We just love him and I wish every family could have someone they loved!!!!! I am so glad your daughter is doing better. I am glad you have a GI that really helps. Our does too, we see him tomorrow for the first follow up (her 2nd fundo was almost 3 weeks ago). Thanks for taking the time to explain to me, I had a feeling that food was being forced too soon. According to your story, it sounds like it was true. I can't believe a surgeon would do that!!!!!!!! Thanks, Carla
Oct 20, 2004
Beth Anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Fundos VERY popular in some places
Carla, You hit the nail on the head. In most places, Fundos are only done on kids who have no allergies, no dysmotility, significant damage and poor response to high doses of meds. In Kansas City, for instance, fundos tend to be recommended for any baby over 6 months who still has signifant symptoms. One retire surgeon there used to beg doctors to send him babies before they have so much damage. He said that doing it younger improved the outcome. I haven't actually seen proof but it is an interesting statement. Sadly, he was claiming 100% success but several of our members say that their children didn't do well after he did their fundos. So even if his claim of 100% success was exaggerated, did he still have better success on the babies? We don't know. The bigger issue here is that researchers are just starting to look at the long term outcomes of surgery. The data clearly show it doesn't help everybody but we are just starting to get glimpses of WHICH patients might not do well. Unfortunately, it seems that the patients who do badly on meds do poorly with surgery. The people who respond well to meds do well with surgery. All this points to reflux NOT being a single disease. Perhaps the treatments fail because the person has an unusual type of GERD that has a different cause. It might help to find other parents whose children have a very similar medical history. Perhaps you should ask the surgeon his or her opinion about why the results are so uneven. Some will say that dysmotilies and allergies aren't cured by fundos. Let us know what you learn. Beth Anderson
Oct 20, 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
To Beth
I know of the surgeon you are talking about in Kansas City. We interviewed the surgeon, that took over for the one that retired, when considering who was going to do our daughter's first fundo. I read a lot of the journal articles about their claims, and even met a mom out here in California who flew all the way there, 11 years ago, to have her son's fundo performed by him. I was impressed with his interview and the statistics, but was won over by the surgeon who ended up doing her fundos here in our hometown. One reason in particular is that he had the same statistics with a Nissen, which sounded more effective than a Thal in stopping reflux. Also, the surgeon here was familiar with every article I had read about Kansas City. He took a lot of time studying why they were having such great outcomes, and why they weren't so great everywhere else. After researching (and continuing to do so) he makes adjustments and revisions to the way he does them here and has had great outcomes. He thought that they have better outcomes there because they do them on such young babies before they have any damage, and even when they only have a mild case of reflux. We thought that many of those babies could have outgrown it if given time, and many of them with only a mild to moderate case of reflux could have been much easier to treat. I know that both doctors could go back and forth with the reasoning....without really knowing who is right. The other thing we have already discussed is why some children do bad and some do good with fundos. He isn't able to explain why my daughter has done so well. She is one extreme to the other when she is and isn't refluxing. When she is refluxing, she is beyond awful; when she has a fundo, she is a poster child for good fundos (his words exactly!). However, she doesn't have allergies, she doesn't have motility issues, or any other thing that could complicate it. He said that other issues like those may make the fundo ineffective because you are only fixing part of a problem.....not really knowing if you can fix the other things. It also increases the risk for side effects. He also said that Chelsea's tissues cooperate very well, meaning the surgery goes really smoothly...more so than the normal child and it makes a big difference in outcome. I do think that there may be different types of reflux; something doctors aren't aware of yet. There is too many discrepencies in treatment outcomes to think that it is only one illness with one face. I look forward to learning more and seeing what more is learned by doctors; maybe by the time my daughter has kids, uncontrolled reflux will be a thing of the past. Wouldn't that be great?!!! Thanks Beth, Carla
May 24, 2005
Ruth
Totally agree
My daughter had a fundo done and we were given no other options and the docors were very closed mouth about post fundo. I just found out today that it will damage the muscle at the top of the stomach and Meagan could strugle with reflux the rest of her life. I am looking for information on post fundo, alternatives to meds and how to avoid another surgery. E-mail mcetuna@hotmail.com Looking for results Ruth
Oct 21, 2004
Christine
Update from yesterday and the testing I was talking about.
The test I was referring to that helps to determine, moreso than an gastric Empty is called Manometry Testing. There are only 4 or 5 hospital in the country that do this testing, and two pedi GI's in the country that do these on kids. One happens to be here in Boston, and the other I think is at Cincinatic Hospital for Children If Jake does have a dysmotilty issue, this test would have shown it and the GI would have know that Jake would not have benefited from the fundo, but infact make things worse, which in our case has happened. Jake is having his on 12/21, but the Dr is trying to move it up to as soon as possiable, to the start of the vomit again during the day. Jake will be having the antro-duodenal manometry part of the test. The problem that we are going to have is that there is not much to do if it comes back showing a problem, so this 8 hour test ( that will go thru the g-tube) will tell is something, but not sure if means anything since the fundo is already done. Ok on to the last couple of days. Jake has an absecsted under the skin sutrue infection from where the Rou-Y was done., he is a month post op. Jake has always been vomiting thru out the night and day, and now for the first time since he J-tube, we are seeing forumla coming up, remember he gets J-tube feed only. I know some of you talk about vomiting after a fundo, and swelling so the food does not go down, in Jake's case he takes not food by mouth, so he really should not be vomiting formula that goes thru his J-tube at a rate of 30!!! Makes no sense. All the Drs REFUSE to take down the fundo, so the only optioion we may have in order to stop the vomit and reflux is a redo. We go see the GI tomorrow and hopefully it will be a good vist. Thanks for all the replies on this. Here are two web links talking about the testing. http://www.cincinnatichildrens.org/svc/prog/motility/default.htm http://www.medicinenet.com/antro-duodenal_motility_study/article.htm
Oct 21, 2004
Sherry in PA
Good vs. Poor candidates for fundo
A couple months ago Sarah's GI started mentioning a fundo after continued symptoms on PPI's. At that point I insisted on further testing and she had a gastric emptying study and esophageal manometry. The esophagus was fine but the LES was weak and she had severe delay in stomach emptying. The GI explained that dysmotility makes her a poor candidate and that (like Beth said) not doing well on meds also can indicate a poor outcome. If that's the case, then it seems the only ones who do well don't really need it (Yes I know that makes no sense... I'm not against the surgery) This is all very confusing and frustrating. I hope research catches up soon and they learn how to treat those with complicated GERD. I read one study that recommended another procedure to the pyloric valve in addition to fundo for kids with gastric delay but the GI wasn't familiar with it. Anyone heard of it?
Oct 21, 2004
Christine
What if the Gastric Scan is fine??
Jake had a gastric empty scan a couple weeks before the fundo was done and it was normal, which is why the pyloplasty (sp) was not done. He had another one a couple months after the fundo when he started to vomit again and this time there was a delay at 60 mins, but than empited normal at 90 mins. So not sure if this manomerty test is going to show anything different. I think if he had BIG delay than I could see the manomerty tests might be helpful to where and why....I don't know, this is all confusing, and it makes it worse to find these tests are avaliable AFTER a fundo is done and goes bad....I will update what the GI says tomorrow about all this. Thanks girls Christine
Oct 21, 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
good vs.poor candiddates
I would love to have some clarity on Beth's statement about kids who don't do well on meds usually don't do well with fundos. What kind of not doing well? Isn't not doing well with meds what makes you consider a fundo in the 1st place? I really would love to understand why one child does well and one doesn't. I would love to understand why my child is such a rarity that the GI would say today that her result is what thet aim for in all fundos. The fact that Jake is vomiting what he gets fed through a tube I would think indicates that the fundo is undone. How else could he vomit so soon after the procedure? Maybe it has just herniated and loosened enough to make it happen? What do the doctors say about why he is vomiting? I may have missed that in all these posts. My friend's son is having the fundo done on Nov. 19th but with a pyroplasty because he does have delayed gastric emptying. Would he still not be a good candidate even with the pyroplasty? If so, why?
Oct 26, 2004
Pam
?Dumping
Christine, I am sorry, I have entered late on all these discussions, butI was wondering if your Jake has been diagnosed with dumping since the fundo??? His symptoms sound like dumping syndrome which is a complication to a Nissen fundo and can happen without a pyloroplasty. I have had 3 children with severe GERD all of whom have had fundo's. The youngest has had big problems since with dumping. He goes pale, lethargic, rapid heart rate, sweaty, bloated, severe abdominal pain, headache, retching (he can't vomit), severe lethargy and passing out asleep and then 2 hours later severe watery diarrhoea. It started about 6 weeks post op and we are now over a year down the track and he still has it. It took a year to get the diagnosis and about 20 doctor visits. It has been miserable to watch him suffer. I noticed it occurs after having any simple carbohydrates - especially in liquid form - juice, milk, cookies, cereal with milk, candy, fruit etc. So now that we know what it is he is on a special carbohydrate free formula to drink, and a high protein and fat diet with only complex carbs. It was diagnosed through a glucose challenge and hydrogen breath test. They were going to do the gastric emptying scan too, but decided they had enough proof. Apparently he will have this for life most likley. But we don't regret the fundo as max drug doses did not help Tom and we had no option. If we take down his fundo to stop the dumping we will be left with a worse senario as his uncontrolled reflux is life threatening. I am not sure if this is any help to you. My email is pdsylva@yahoo.com if I can help any more. My story is posted on the discussion section titled "3 children with GERD" Take care, Pam
Oct 26, 2004
Christine
Pam...Thank you!!
Pam Thank you for your post. Acutually since Jake started getting the J-tubes feeds, the explsovie dierreah is gone. Ever once and while he will have dierreah, but for the most part the J=feeds have helped alot. They have talked to me about redoing the fundo, before taken it down. It something that I am going to really consider. Even if his gut gets complete rest and lets the fundo and swellowing go down. It is just hard to watch Jake throw up all day and night. And it is even harder when I know he is refluxing. His poor throat and nose hurt him. The screams he lets out in pain just brakes my heart. Thank you again for your post....It really means alot Christine
Oct 27, 2004
Pam from Perth, Australia
Christine
You are very welcome. I do hope you get some help for your boy. It is so desperate to watch your child suffer and to be powerless to help them. I know I wish I could take my childrens' pain and suffering for them. Your son is blessed to have you as his advocate. Keep fighting, and the answers will come. Don't hesitate to email me. Pam
Check with your
doctor first!