I am new to this and in desperate need of any advice. I have a 23 month old daughter that was diagnosed with reflux the day after she was born. She could not tolerate oral feeds and had a feeding tube until she was 6 months old. She did well coming off of the tube and stayed on Neocate but battled pneumonia and numerous infections. She has had 3 sets of tubes as well as her tonsils and adnoids removed due to the reflux. SHe has been on prilosec, prevacid, zantac, reglan. She also takes albuterol and pulmicort as well as nasonex. She has been on a decline since September and GI has tried changing the meds and nothing is helping. They did a PH probe which showed 291 reflux's into her esphogaus in 22 hours and her biospy showed severe inflamation of the esphogaus. She also has ulcers in the throat area that they beleive are form the acid. ENT and pulmonolgy said their hands are tied they can do no more for her becasue they believe the reflux is aggravating her airways and throat. She eats poorly and cries a lot. They put her on nexium this week and we pour onto her food so now she is not eating much becasue she hates the tatse. They are pushing us for a FUNDO and of course we are desperate for another route but it does not appear that there is one. We had a GI that told us that at 10 weeks old she needed a FUNDO and we said no until all other areas are exhausted. She did fine for over a year but is not gaining weight and has speech issues and constantly drools becasue she will not swallow. I am hoping the nexium does something but the GI does not appear to hopeful and said that her anantomy may be the problem. Any ideas?

It really does seem like you have explored all options, to me. If all the meds you have tried have not seemed to help her maybe it is best to go ahead w/the fundo? I'm sorry I'm not very knowledgable in that area but after reading your post. I really don't have any other routes to suggest :( Did she do well on the feeding tube as an infant? I'm really sorry I don't have much advice for you, I'm sure someone will though as many are more knowledgable in the FUNDO area. :dontknow: But I do want to say that I'm really sorry your little one is having so many complications and I hope you find the right avenue that helps her on the road to some better days. :hug:

No fundo experience here either. Our members and mod who do will likely be on later tonight and will be much better equipped to answer your questions.

What I have come to know on the boards is that you should definately explore all options prior to the fundo and it is not a cure by any stretch. Many of our kids still reflux post fundo. I do know that others have gone for it anyway after exhausting all else and although their children still reflux it has made a world of difference for the overall health of the child.

It sounds like she has so many complications going on that exploring it as an option is necessary. I do not know if nexxium will help. Prevacid and zantac is our saviour here. We also use flovent and ventolin. We have members who have children on nexxium (I am personally on it) and it helps. The question becomes whether or not it is indeed a physical abnormality that is causing the issue. Our moderator Erin will be able to talk to you about her experience.

Meanwhile,:hug:

By the way, here is Erin's GERDling Moms site for Eli and what she went through. It may help.

http://elismom.gerdlingmoms.org/story.htm

Sam had his fundo this past summer, I felt like we had exhausted all options and had no choice. He is a bit younger than your child and has some other medical issues so I really can not tell you what you could expect. Nothing Sam does is the "norm". I am sure Eli's Mom will have some more words of wisdom for you. It is a very difficult decision--I wish you the best of luck

Wow, sorry I missed this until now!

First, it really sounds like you guys have tried everything, we were afraid to do the fundo as well and put it off as long as we could, just like you guys have. But, the fundo has helped us so much! It isn't a cure-all and we still have some problems, but it sounds to me with the complications that your child is having, it may end up helping her. We were to a point where we just had to try it, it is a long recovery, so keep that in mind. Please let us know what you decide and ask any all questions. There is so much we can talk about. Reasons to do it and not to do it, what to expect, what to ask. Let us help you with anything, it was the hardest decision we have ever made, and it was difficult leading up to the surgery, this place is a wonderful place for therapy and support... :hug:

It does sound like you have tried everything so far for your child. I have four children and three of them required fundos due to severe reflux. I know for us that we had no other options,because we had tried everything. I do know that we made the right choice.

I was wondering about the anatomy of your child because of your docs beliefs. I was wondering what test have been done to see if there are any anatomy problmes ie; endoscopy or upper gi.
I was also wondering if the doc would do a gastric emptying study to make sure that your childs stomach empties correctly. We found this to be very important prior to surgery. I was also wondering if they are going to place a feeding tube along with the fundo. My children didnt have any placed at time of surgery but did require them placed at a later date. If I would have to do over I wouldnt do the surgery without having a feeding tube placed at the same time.

Finally make sure the docs are up front with you about the surgery not being a cure all. This surgery can bring on its own set of problems, some ways you are trading reflux problems for new ones. I can tell you that I would do the same thing over if needed but would have the feeding tube placed and be more educated on the fundo. I do wish you luck and if you have any questions please ask.


Melanie

Oh, I forgot that, Thanks Mel for bringing that up! You definitely want to have an emptying scan, don't schedule surgery without it! And, on a side note, our son had the fundo without the tube and does fine, but it is something you should definitely consider.

She had a DGE as an infant and it showed only a slight delay. She has had endscopies about every 6 months and this last one about 2 weeks ago was the first time that they were concerned about the inflamation. What amazes me is that she is not that horrible but the Dr said she has learned to live this way and probably does not know how to be reflux free. The Ph probe has them(us) all upset as well becasue they feel that refluxing 291 times in a day and that was on her medication is terrible. She was on a lot of prevacid and zantac but now we are trying the nexium. I struggle with this ordeal becasue I keep thinking will it get better and we can muddle our way through or am I just trying to keep making excuses why not to do it. She tells me her neck and ears hurt daily and I know her throat must be hurting. All she wants to do is drink and not really eat. How do they decide on whether they do a lap or open fundo? Does anyone know of a good GI or surgeon in the Philly area for a second opinion? I think that may help knowing that I did not jump right into it. Any help you can suggest or questions to ask these Dr's is much appreciated because I feel so lost. I have to call them back this week to tell them how she is and I am afraid becasue it is so hard to tell with her. I think I may request the endoscope and PH probe again to see if the nexium is doing any better and also to get a repeat DGE done and then go see the surgeon with all of these results. That way if I say the wrong thing then at least the results will really tell the picture.

My daughter had two fundos--one right before age 2, and one at 2 and a half. She will be 4 in March.

First let me preface what will follow with I do not regret doing it. If we had the chance to do it all over again, I would definitely repeat our same choices.

What I may have changed---I would have done a gastric emptying scan first. She has never had one done. Looking back on it, it would have been pure torture on her, but it would have helped having that info going into it. After her 1st one, she had REALLY bad gas bloat and constipation problems. I suspect her emptying was delayed and we didn't know it. The pressure caused by this likely put a lot of pressure on the stitches and combined with a chronic cough she had, caused it herniate. A g-tube placement would have helped because we could have vented the air. A pyloraplasty may have been done originally if we would have known she had delayed emptying (if she did, we are just guessing at this point but we will never know). She did make it through though although the recovery was tough and the wrap only remained intact for a few months.

4 months into the second, the hernia repair that she had with the fundo re-herniated. It went through the fundo and loosened it so much it wasn't working at all anymore. So she had both the hernia repaired and the fundo re-done and actually had the opposite effect. She got dumping syndrome, which is similar to chronic diarreah. It was definitely easier to manage pain wise than the delayed emptying, but took a toll on her weight.

We made it through that too:iconbigg: although rough. I would totally recommend the other opinion and the repeat tests. I would talk to more than one surgeon so you are confident with your choice. I would ask each one about their stance on gtube placements. Some do it for all patients no matter what. Some only use it when absolutely necssary. Our surgeon was against using them unless clearly necessary. She got through without ever needing one and although it may have helped in some ways at the time of recovery, I KNOW that for MY daughter, it woudl have had irreversible effects on her. I KNOW she would not be eating at all today given all the other circumstances had she ever had one.

Also, know what to expect, know what is possible (side effects) and know what the plan will be if she experiences any of the potential side effects so you will be prepared for any outcome. They can turn out great with a child walking away without ever needing meds again. They can turn out really bad and everything in between. You have to know you made the right choice with the right docs and the right hospital and know what your child needs going into it. That way, regardless of the outcome you wont have regrets.

From reading what you wrote, I do think you have done all you can. If I were in your shoes, knowing what we experienced, I would still do it. Although for MY daughter the benefits were short-lived, it was worth it for the short amount of time that it helped. She better copes with reflux now that she is older and her body is physically stronger. It enabled her to outgrow the chronic stridor that the reflux caused because her throat grew while the fundo was in place. She doesn't turn blue anymore even though she refluxes a ton again. That is great for us! My last thing is to go into it with realistic expectations. I expected it to cure her after the first, and hoped the second would. I was very disappointed in that regard. It did give her other problems--it was a trade off. It was one that was worth it to us, so make sure that you know it will be worth it for her. Once I adjusted my perspective on the fundo (stopped looking at it to cure her from reflux but only to better manage the reflux and the effects of it), my attitude about it changed.

Let us know what you decide and let us know when you need support, you are so in the right place!

Sorry to jump in, I really don't have any advice about this but I just wanted to let you know that it sounds like you have been through a lot in the past 2 years. You sound like you are doing a fantastic job, reflux alone is hard enough without all the added problems. Keep on fighting, there will be an end one day and you will work out what is right for your daughter.

I was wondering where you are recieving your gi services now? My son has been seen several time at Childrens Hosptial in Philly and then also at Dupont Childrens Hospital. They both have good gi docs and surgeons.

Melanie

Melanie - What Dr did you use at CHOP in Philly? Did you use a surgeon there as well? Our GI recently relocated so we are in transition with Dr's. We are luck to have a great peds who is organizing everything but any suggestions of good Dr's at CHOP would be appreciated.

Our 10 month old son had fundo/g-tube surgery 5 months ago. It has helped tremendously with the reflux, but like everyone else says, it can create it's own issues. I know that he needed it, so we don't regret doing it. Just be sure to trust your doctors and ask TONS of questions. Good luck.

No fundo experience here, but I wanted to say how sorry I am that your little girl is going through this. I hope something helps her soon.

If you want info I could get some for you because the docs that we have seen are all gone. I do know a few people that are being seen at Chop presently and will get the info for you. If you could tell me where you are at it would also help because as I said DuPont is a great place also.


Melanie

That would be great. We are in Willow Grove, PA and CHOP is an hour away. Thanks so much.