Hello all,
my name is Richard and I'm a newbie from Switzerland. Our son Jamie (14mo/Down Syndrome) has always had reflux, but last December it got so bad he couldn't keep down anything anymore, so for fear of dehydration we had to rush him to the emergency room of the local children's hospital , where he had a gastroscopy done. It turned out his esophagus was severely inflamed and his stomach a little, so he was put on antra (prilosec) which seems to have healed the inflammation, but not his reflux (which we didn't expect because of his cardia insufficiency). Still, it got a bit better, although he has been losing weight for the last two months which is making my wife and me sick with worry. The doctors advised us to add high calorie supplements to his food (first maltodextrine, then duocal), but he's not responding terribly well to it, he's refluxing even more! The strange thing is that he does quite fine for one or two days, but on day three he'll puke up EVERYTHING. So we're thinking about having a fundoplication done, although the gastro specialist at the children's hospital strongly dissuaded us from it. He said that up to 30%!!! of these kids have rather unpleasant complications later. I'd like to ask about any experiences with this op. Is the risk really that high and what kind of problems should we expect? Any other kind of advice is welcome as well, though!
Thanks, Richard
Husband to Saskia,
Dad to Nora-Jane (4,5yrs) & Jamie (14mo)

I moved this into the Fundo forum so you would get more responses. :iconbigg: I am not familiar with the fundo but there are several moms on here who's children have had it and they give excellent support and advice.

Good luck. :)

Hi and welcome to the board. I am sorry to hear that you are having so many prolbems with your little one.

I have four children, three of them have had to have a fundo done with one of them having to have a second one done. I would have to agree with your gi doc about not doing the fundo at this point.

I have questions for you 1. Has your child had a grastric emptying study done yet? 2. Has your child had a ph probe done since he has been on the medication? 3. When the endoscopy was done did they take biopsies? And if so what were the results?

The reason I ask is that a fundo should only be done as a last resort when the child is in a life or death situation or the other is that there will be severe permanent damage done to the child. The fundo is not a cure all and create a whole new set of problems for the child that they didnt have prior. I have learned this first hand.

My oldest son has had to have two fundos done and has a gj feeding tube. He had no problems other than severe reflux and was able to eat with no problems prior to the fundo. After he had his fundo he was unable to eat without food getting lodged constantly ending up in the hospital many time to have food removed from his esophagus. He ended up requiring a feeding tube placed so that he wouldnt starve. He also ended up needing a second fundo due to the first one slipping. He has a severe emptying problem of his stomach now and required medication. The reson the surgery was done in the first place was that his esophagus was being eaten away from the reflux even on max doses of medication. He also had contstant ulcers that wouldnt go away. We knew that if he didnt have the surgery his esophagus would be destroyed. I know that we made the right choice but still are questioning because of all the complications that have arose.

Now my second child has her fundo done because she had many complications from reflux. She had constant sinus infections,astham attacks,and upper respitory infections. She required two sinus reconstruction surgeries due to the reflux. I will have to say that she did very well with the surgery and had no major complications from it. I will have to say though that the surgery wasnt a cure all for her either because she is still on medications for reflux. She still refluxs past her fundo.

Finally my third child a son had the fundo done due to severe sinus,ear,astham attacks, and sleep apnea all due to the reflux. When he had his fundo done he developed complications immediately and ended up in the hospital for almost a month after the surgery. He also required a feeding tube placed and had it for three years.
He also is still on reflux medications today because the fundo was not a cure all for him either.

As I said that the fundo should only be done as a last resort and when there is nothing else that can be tried. I would talk to your gi and see what kind of plan that you can come up with and go from there. If you have any questions please feel free to ask. And I am sorry if I sounded so harsh but I wanted to give you a true picture.

Melanie

I'm sorry you are having so many problems. You have found a wonderful site. Everyone here is so supportive and knowledgeable and has first hand experience with what you are going through.

The only problem we have had post-fundo is retching. Which is not a minor problem in our son's case. He had fundo/g-tube surgery done at 5 mos due to severe GERD and failure to thrive. He did not respond to medication for GERD and had stopped eating altogether due to--we believe--the pain caused by the reflux. He is now nearly a year old. He seemed to be much better post fundo, and was even eating by mouth more. Then he started retching all the time. To make a long story short, we tried everything the GI could think of before finally having to put him back onto a feeding pump 24 hours a day. The retching has resolved now that he's on a pump, but he now flatly refused to eat by mouth, so we've taken a turn for the worse. I know that we had to have the surgery done, but had hoped it would be more of a cure-all. I agree with Melanie, it is definitely not a cure-all and can sometimes make matters worse. I also agree that it should be done as a last resort. Good luck.

I have no experience with the fundo here and see that two of our experts have responded. There will likely be more posts for you by others for this.

I just wanted to let you know that we do have another forum here for children with special needs and we have another Down's Syndrome child on the board. It is a good place to link up with others in the same special needs boat as yourself.

As I am of no use to you for fundo information I can only offer support and wish you all the very best. You have come to the right place.:hug:

Thanx for posting!
I guess we'll put all our efforts into the less drastic measures...
All the best to you all,
Richard

I do not have anything to add that allready has not been said allready. It is a tough decision to make and as the others said--sould be last resort. I would be agressive with meds and make sure other issues like allergies have been addressed. You may also want a second opinion it possible. i wish you the best of luck. Our son Sam has had no major complications from the fundo. He has some occassional retching, but is usually related to increased volume of food. Good Luck and feel free to ask any questions--this is a great site.

Hello,

I would definitely try everything before considering the fundo, it can have alot of serious side effects. Has your child tried all the meds? There are many different meds and combos you can try. And, hopefully, your son will grow out of it before you need to consider the surgery. Please keep us updated and let us know of any Qs we can help you with. This board is a great place to get support for your little refluxer, Hang in there!

I definietly agree with the others that the fundo is not a cure all. I went into the first one expecting it to cure my daughter, and I was rudely disappointed! Not only did it not cure her, but she had new problems. It helped for a month, maybe two, after she recovered and then it herniated. We did it again, because that kind of response is not typical so soon after surgery.

We did it because she suffered from chronic asthma attacks, stridor, and sinus infections. She still lived in severe pain and was not thriving. After she recovered from her 1st one, these problems significantly faded for a month or two. Because they returned, we opted for the second one hoping that this time, it would work better. This time they put in 7 extra clips holding everything in its correct place. They call them limiting stitches because they limit the movement of her esophagus, stomach, and diaphragm. This was done to protect her from repeated herniations (she has had two). The recovery was much longer and much more difficult since they took in more of her esophagus.

The chronic stridor disappeared and has never returned, and we assume its because this fundo gave her enough time to "outgrow" the small opening between her vocal cords.

She was free of asthma attacks and sinus infections for 13 months after the second--longest ever. This was GREAT because this was the main reason we did it.

But she had new problems. She takes more meds than she did before to manage the pain she still has. She has more pain than before because her nerves were irritated during the surgeries, and she has had dumping syndrome, and the lingering effects of it ever since. Her digestion is worse as well, and this is all permanent.

It is important to remember when doing a fundo, that you are permanently altering the structure of their stomach. And when I say permanent, I don't mean to imply that it will permanantly stay the way it is intended to stay. Another important thing to know is that ALL fundos eventually stop working---when we do it, we do it with the hopes that by the time it stops working, they will have outgrown the many problems you did it for (asthma, croup and stridor, sinus and ear infections) because those parts of their bodies have goten bigger and are less prone to being damaged and effected.

Sorry to be so blunt, but I think it is really important for you to be aware of the pros and cons when making such a big decision. One more thing, is that we are 16 months post op from the second one and she is back to having asthma attacks, sinus infections and still has severe reflux, severe pain, plus the new problems and because of this, takes more meds than before.

If given the chance to go back in time and do it over, I would do it again. That is how bad off she was. I don't regret it and I really dont see it as a bad surgery. I just wish it had a higher success rate for a longer period of time. It gave her time to grow out of some stuff, just not as long as we hoped. Just weigh carefully what it is for your son. Knowing both the pros and cons and considering what he needs most will help you make the right decision. Good luck and let us know how it goes.

Hello all,
I'm back again and much wiser thanks to your posts. I think I got the hint now that a fundo really IS a last resort.
Well then, I've got another question. I stumbled over a website explaining about DGE and I thought that sounds exactly like Jamie - refluxing stuff that must have been lying around in his stomach for hours on end, I mean I used to think that usually a meal should pass on out of the stomach after about 2 hours, not 5, isn't that so? Jamie did have a barium meal and some x-rays done over a period of about 4 hours to check if his insides are working right (they were), but of course that was a white liquid he was given, not the semi-solid food he usually gets. What do you think about this?
Thanks, Richard

Richard, my son has dge and severly. He still has a feeding tube in place because of it. The one test that is used here in the states to diagnosis it is a gastric emptying study.

My son had to eat a egg sandwhich and then had picutres taken every so often to measure how much food he had digested. Now my ohter son drank water and had the same test done. Both the water and the egg are laced with radioactive material so that they can take the picutres. Also drinking the water goes much quicker than the solid.

This test showed that my sons stomachs dont empty correctly. They are both on meds to assist them empty faster.

I would talk to your gi doc and see what they think and what can be done. I do wish you luck.


Melanie

Welcome !!
I couldn't help but feel inclined to post regarding your first question regarding the fundoplication and your sons condition. My son has had 4 fundoplications performed with varying out comes. However, your sons diagnosis of D.S. actually puts him in a completely different category then most of the children on this forum whose children have had findoplications. In fact there is an article written by a Dr. by the name Demeester, who is very knowledgeable of the procedure and some of the studies he has done in regards to children with D.S. & fundos really shows an entire different outcome then the picture that has been painted for you up to this point re: the fundoplication.
I would imagine your little boy suffers from low tone because of his diagnosis of D.S. ? Children with any form of low tone are prone to poor emptying as well as GERD, & sometimes dysphasia. A very large handful of children with D.S. improve tremendously
after the surgery as it creates more tension in the upper part of the GI tract and helps to compensate and counteract existing low tone issues. I would encourage you to seek an experienced surgeon who deals mainly with special needs children in your area. Also, a good GI Dr. will be able to perform limited tests (because of your sons young age) of his motility (strength of movements in the GI tract) to rule out any other conditions that may be under lying in your son that could affect his outcome.

I just wanted to add that everyone really had some great points regarding the surgery & things to consider ahead of time. I myself have never been a big advocate for the surgery as my son has yet to have a succesful nissen performed to date, even after four nissens & a pyloraplasty. I just feel your little boy falls into a unique catagory of children that usually have fair to good outcomes from the surgery.

Hello I am new to this but just wanted to share a little on my sons story Gaeb. He was born 2 months premature and had alot of things to struggle with, severe gag reflex, severe hypersensitivity to his head, swallowing problems, his tummy is slow to digest, asthma and Gerd. We were told Gaeb was failure to thrive and our only hope was to get the fundo and G-tube surgery done. That was real hard for us but we had been sent to Edmonton to be observed and sev, docs said we must. That was 2yrs ago now and yes he is doing better but they say not where he should be and we still struggle. Gaebs biggest thing now is being sick alot and when he feels anything in his tummy he says he is sick. I am looking forward to talking to anyone else who has this problem. As well he has a condition they say is rare I cant remember want its called but his mic-key is being sucked in and its quite painful for him. The only relief comes from putting some water in his tube. Hope to hear back from some one. thanx Rosie

Rosie...I am hoping that one of the mods see's this and moves it to a new thread or under children's stories where you may get more responses of your own! Instead of it being in someone elses...not many people come back to post in the same thread...

I hope you get some answers soon:)

Hi Rosie! I will pm Erin about this and I am sure she will respond again.

It is often better to post for your own thread but mods usually do take a peek back at threads they have posted on.:iconbigg:

Rosie,

It sounds like the tube is causing some problems. I don't have much experience with that, but hope you get the help you need. I again urge you to visit our tube feeding forum. there are many experienced moms there with tube fed kids. If you need help finding it please let me know!