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g-tube / fundo advice please

Jes - posted on 12/14/2010 ( 36 moms have responded )

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Hello! I Have a couple questions concerning the g tube and fundoplication surgeries. My son is 20 months old and diagnosed with Partial ACC, Spastic quad cp, seizures and constipation. He can hold his head up (but not steadily), is unable to sit or roll over, crawl or walk.

We have recently had an upper gi w/ contrast done and it was negative, and a ph probe test done (no results yet). My son's doctors have brought up the idea about a g-tube and a fundo for him. He is underweight, i think about the 3rd percentile for height and weight and head cercumfrance. I know that the G tube would be great as he doesnt eat enough even with the boost 1.5.

My son has coughing spells, sometimes gagging. Often with these he will bring food back up and he'll either vomit or it just sits in the back of his throat visibly. Usually the high pitched breathing (gasping? i'm not sure) is before and after. He also does the arching of the neck and back half the time. And we HAVE to give 3-4 oz feeds or it most likely will come back up within the next 2 hours. Its worse when he has a cold too. (Edit: He can be sitting straight up and STILL cough and gag and make weird breathing/grunting sounds)

Anyway.. the coughing/gagging dont happen ALL the time anymore, but 3-4+ times a day. When he has a runny nose he will gag on the post nasal drip as well and his lips will turn blue. And he still swallows a lot of air while eating and crying as well.

I've been doing a lot of reading wich is starting to really upset me to some extent, even depress me. I dont know how anyone can make these decisions. The whole idea that a child cant vomit is scary, i also dont want to make the wrong decision. (who would want to?) While he's not fully diagnosed with reflux... I guess what im trying to ask is if it sounds like a fundo would be a good idea and why? I'm trying to cover all my basis before i make a decision and my brain is a complete wreck these days.

Am i making any sense at all?? Sorry if im not!!

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Mary - posted on 01/01/2011

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three of my children had g-tubes and fundos. two of them were able to get rid of there g-tubes as they got older. one of them is able to vomit as the fundo has loosened over time. my other daughter is 15 and not able to vomit, but it really hasn't been an issue. she reccently had a cat scan and the anethesia made her try to vomit, but only twice and then she was done. i am really glad that my children had the fundos. i have many students who have g-tubes, but not fundos and when they aspirate they get pneumonia. it is much harder to go back later and add the fundo. hope this is helpful.

Tina - posted on 12/17/2010

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My daughter had a fundo with a G-tube when she was 5 for severe GERD. She was really underweight, vomiting all the time, etc. I was pretty freaked out too about the not being able to vomit thing, She is now 11 and our experience has been that if she gets a "bug" she may dry heave a little (not usually more than once or twice) then she will just start having diarrhea and it comes out that way. As for the tube itself, easy to use and they get used to it generally very quickly. Hope this helps! Feel free to message me if I can be of further help.

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Christine - posted on 08/16/2011

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I have not read any other replies yet. But my daughter had the same issues. She is now 5 years old and got a gtube at 2 months of age. She had gagging/vomiting issues and also had poor suck/swallow technique. Finally at age 4 her new GI put her on liquid Zantac. The vomiting/gagging went away. I have heard nasty things about a fundo. I would not go that route until all other options were used up first.
Just my input.

Sonya - posted on 08/16/2011

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My son had a g-tube inserted at 6 months old (he had an NG from birth - 6 months) and then 6 months later he had the fundo.
All I can tell you is that the fundo was one of the best decisions we made for him. He was vomiting a lot after getting the g-tube inserted and it just got to the point where I was very overwhelmed with cleaning up barf, doing laundry and having a kid who was uncomfortable.
Matthew's fundo has not changed (ie loosened) in the 11 years that he's had it.
We have a friend whose son is 1 day older than our son, with the same birth complications. They have a g-tube but no fundo and now they're struggling with the fact that their son can't keep anything in his stomach. So he moved over to a J-tube, to bypass the stomach altogether. They look back and wish they had done it because it would have been easier on their son.

You won't make a wrong decision. You're the mom and you will always do what's best for your child and your family. You know in your gut what the best thing is.

Try talking to your doc about getting some cogentin. This is a drug that helps dry up secretions and that might help some. Also consider getting a motility drug and try that out before the fundo. He might be vomiting because his stomach isn't emptying fast enough.
Another drug that is used frequently is Atrovent nasal spray. This helps to dry up the post-nasal drip. My son also coughs and gags on this and the spray has helped a lot.
You might also want to consider discussing the option of having a suction machine at home. We have one and it really helps to keep the airway clear of things - like the vomit sitting in the back of his throat.

If you want to talk more, feel free to PM me. I've been doing this for 12 years and I know it's incredibly hard when you get hit with something like this.

Sonya

Amanda - posted on 05/11/2011

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Hi there. Our son got the nissen procedure done at the age of 3 months old n a g-tube placement. He graduated to the mic-key button then to the bard button. He also had acid reflux and low muscle tone so they recommended doing the procedure to lower the risk of aspiration. When he was born he didnt have a suck reflex so he was unable to latch on or drink properly from the bottle. Still to this day he is undiagnosed at the age of 5 but making slow progress. He physically delayed...not walking independently and depends on assistance w/ hygeine and dressing. About a year ago he was able to have the g-tube removed and eating on his own. He also battles w/ constsipation and gets miralax daily. We havent had any issues w/ the nissen. He is not able to have a full burp so he cant have anything carbonated and we stay away from any food that tends to make u really gassy. When he is sick he is unable to vomit so he tends to get diahrea when he is sick. When he still had the gtube it was easier to releive if when he was sick cuz we just left stomach content out that way or releived him of gas out his gtube also, so it is a little tricker now that he got that removed. Like i said we opted to the surgery to lower the risk of aspiation. Good luck to you and your family. Any questions dont hesitate to ask. Take care!

Fan - posted on 05/09/2011

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complications are right all these needless surgeries euro drs are getting rid of sonograms because they screw up the molecules of the babies

Fan - posted on 05/09/2011

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reglan is one of the worst drugs ever and it was never meant ot be given to children

Fan - posted on 05/09/2011

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go immediatley to www.cficm.com
tal to dr mike tell him ethan sent you
he will be able to fix the problem
my son was 4 and a half and did not walk talk or crawl or eat by mouth sht story mor e later
urgent you talk to dr mike at www.cficm.com

Michelle - posted on 01/12/2011

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You are making perfict since to me. I had to make this decishion not very long ago. My son had very poor weight gain, GERD, and quite a list of other problems. I was very scared, confused and didnt know what to do. Well, I decided to go for it, and now, I dont regret it. Feedings are a lot easyer I dont have to worry about him gaging, and asperating. He has gained quite a bit of weigh and making very good progress. And its not 100% true that they will never be able to vomit again. My son has, but I was assured that everything was ok with it. I hope this helps you make your decishion, its a tough one, but when it comes to our babies we always make the right decishion for them.

Kathy - posted on 01/11/2011

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hi my son has a g-tube and a nisson...he can't throw-up...he dose great with it...i have never had any problems with it...talk to your dr.tho you do not want a g-tube with a water balloon...if he has reflux it will bust and come out...the acid will cause it to bust...look into the one with the mushroom end on it...that is what we have and we are doing great...kathy

Leslie - posted on 01/08/2011

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I was a pedi nurse for years and both my patients' moms and I felt great relief after the g-tube/fundos were done. You feel like the child is safer and every thing involving feeding is so much more manageable-even meds!

Jes - posted on 01/07/2011

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Figured I would update you guys. We have gone forward with the G tube, but have put aside the idea of a fundo unless he really needs it. I'm kinda glad the decision is finally made as i tend to analyze everything to death! Hehe. I really really really really REALLY appreciated everyones input, you have put my mind at ease and have given me the courage I have needed. It was more of a 'me' issue then my sons issue because I knew deep down he needed a g tube but i really didnt want him to need it either . if that makes sense. I know this is the right choice and i'm at peace with it . TY SO MUCH

Jes - posted on 01/01/2011

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I want to thank everybody for their stories. They made me not feel so alone (or crazy). Still doing a lot of research of course, have a month to go before we see his GI dr again. Definately leaning twords the g-tube at the very least.

Buffy - posted on 01/01/2011

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my daughter had fundo and g-button procedures done the first 4months of her life. she is 5 now and thriving. when she gets the tummy bug and starts to wrech (like dry heiving) i decompress her. that is where you insert a decompression tube in the g-button to release pressure and unwanted contents. it is rough to watch her go through those sick spells, but i wouldn't want her to aspirate and get a lung infection to make things worse.

her fundo is the top of the stomach wrapped around the lower esophagus (im a bad speller), and she has the micro ivasive g-button. im very please with the results that have helped my baby girl grow. now i will tell you that she has had her g-button replace several times, but i hear that is normal.... all in all she wouldn't be here w/o the proceedures. i thank the Lord for modern medicine and talented doctors.

Kathy - posted on 01/01/2011

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Hi all, who knew there were so many people like us out there? My son is 2 yrs old, with spastic quad CP and epilepsy. He had his g- tube and fundoplication done in March 2010. Prior to that he was fed naso gastrically, vomiting every feed and losing weight. Since then, he does still occasionally vomit, but he's now a healthy weight and is a much happier and healthier boy. We had stopped seeing his smiles, now he wakes up happy and even laughs regularly. We haven't regretted making the decision for a second. Everyone's different though, hang in there, get all the advice you can and you'll make the right choice.

Erin - posted on 12/28/2010

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I thought Laura from Ontario had great advice. I would also suggest a GJ tube rather than a g-tube and fundo. The fundo can be really helpful. Its come up as an option several times for Maggie but we've managed to avoid it.

We have a little friend who, about 6 months ago, got a fundo, g-tube and started a rare reflux med called cisapride. The combination has been miraculous and has eliminated her reflux, allowed her to grow and thrive, develop much faster, sleep much better. She is on continuous pump feeds.

Maggie has a g-tube and we do bolus (syringe feeds) four times per day which has been really easy and convenient.

For the constipation, you might look at a g-tube formula called Compleat. Maggie has always had very soft stools and this one caused diarhhea, but our dietician began recommending it to other families and says its the most effective anti-constipation treatment she's been able to suggest. The nice thing about Compleat is that its a whole-food formula. Its formula made from blenderizing chicken, cranberries, beans, peaches, peas...real food! All the other formulas are just creepy combinations of dried oils and sugars and minerals, etc. I wish we could have stayed on Compleat but it just didn't work for us.

Good luck!

Jennifer - posted on 12/27/2010

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Also he has constipation issues so he's Lactulose once a day for it, he takes Prilosec for the reflux and we're seeing how he does off the Reglan, if he doesn't do well he'll be back on it, and he has a seizure disorder and is on Keppra for that. If he misses a dose of Lactulose we know it, he needs it everyday.

Jennifer - posted on 12/27/2010

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My youngest has Complete ACC along with multiple brain malformations. He was 19lbs at 2 1/2 years old, he was finally diagnosed with having reflux and aspirates all liquids, they talked about a Nissan AND a gtube. They ended up only doing the gtube, if he didn't get his gtube I'm almost positive I wouldn't have him right now. He's doing so much better now. He's pulling up onto his knees, rolling over, scooting across the floor, and at a healthy weight. It's scary, but if it's for the best for your baby, I'd do it.

Carie - posted on 12/22/2010

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Hiya hun, we went to Oxford for a video-fleuroscopy and a ph study these were done over 24 hrs hunni, the PH study by the nasal tube, the fleuroscopy was done under another method, i cannot understand why they won't do this proceedure hunni, you make sure you talk to the consultants and find out all the facts first before making any decisions.... I wish you all the luck with your son hunni the peg has worked wonders for my little boy, it has enabled him to gain weight, strength in turn building muscles, i was told he would never walk maybe he never would if he hadn't had to me this life saving treatment as the reflux was so severe it was burning his lungs causing Chronic Lung Disease and making him so weak.... I wish you all the best on whatever decisions you make hun, feel free to add me on facebook or email any time cazstreambank@btinternet.com.... Have a good Christmas hunni xx

Jennifer - posted on 12/22/2010

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getting a gtube was the best decision we made for our son...I was terrified at first, but it has been a miracle. And now, 3 years later, he is ready to have it removed.

Trish - posted on 12/21/2010

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We're in British Columbia Canada and I will tell you that any of these decisions are NEVER easy but we do what is best for the quality of life of our children. My child is 7.5 years old and has Quadriplegic Cerebral palsy, Epilepsy and Pan-hypopituitarism ( basically a hormone condition that causes havoc in her little body if things are not quite right). Afraid as I was of all these medical things I have already endured decision making in, I do know that studies and the like aren't always true. Fundoplication in our case ( daughter would power vomit across the room every time she coughed, in turn burning her esophagus and inner throat so badly it enflamed her tonsils and adnoids) was an amazing thing. Sure it may be controversial to some people, but at some point most things in our daily life could be percieved that way to almost anyone. It's the whole "mile in my shoes" scenario you have to look at. Doctors and Specialists have been doing both G-tube insertion and Fundoplications for a very long time and while I agree not every child needs one it's definately a step in the right direction if there are already issues with feeding and reflux. Having a child with CP, doesn't mean that these decisions will get any easier I'm afraid, I've certainly learnt that and I encourage you to research every thing you're told and do like you are doing now and ask other people who have been there. If you ever want a ear to listen please feel free to email me at crazytrish@hotmail.com, and that is extended to anyone who needs the same. Take care and I hope I was a little bit of help to you.

Merry Christmas!!

Trish

Jes - posted on 12/21/2010

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Ah ok. Think he had something done like that but they used the term 'upper gi' with the contrast stuff it was with an active xray?. It was to see the structure or something, im not quite sure....

Iridescent - posted on 12/21/2010

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We had swallow studies done when my daughter was an infant - laying down, via bottle, no problem at all to visualize. We also just had them done last month with our son, 3 years old, laying down, drank from a cup with a bendie straw. The ability to sit up really isn't relevant at all, so if that was the reason given for not doing it, demand it.

Jes - posted on 12/21/2010

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Carie - how did they test his swallowing? I keep being told we cant do a swallow test because he's unable to sit up, but then i wonder how do they do it on newborns. Confused. At this point I can only assume and yes i think the CP has a lot to do with his reflux and swallow issues as they arnt all the time 'severe', but still there non the less.

We were having a good week eating until today, feels horrible having to pin your child still just to get a bottle in his mouth so he can eat, frustrates us both. And im seeing more and more having to hold his chin for stability and ease.

I had a dream last night that I had a mickey button and it was all so easy to feed and stuff, and im not sure how to interpret that but everything felt right....

Anyway, Finally got a GI appt set up again, too bad its in february....

Carie - posted on 12/21/2010

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Hiya hun, my son was given a gastrostomy and a nissans fundoplication at the age of 16 months, like your little one, he had hypotonia and poor swallow reflexes due to his condition... My lad was diagnosed with severe reflux and the reason behind the blue episodes (i think in your case the lips) was due to him aspirating his feeds onto his lungs when he was gagging on the gastric nasal feeds and orally,my son's blue episodes were so life threatening he used to have seizures and have to be hospitalized because of the severity of the reflux, the two together were the best thing i had done for my son, he was on the 2nd percentile and not gaining weight at all, like yourself i had reservations as a mother as to whether i was doing the right thing, i kept beating myself up thinking was i doing the right thing too, in retrospect yes i did, he is now a good weight, coming up for 10 this year he too has many complex needs including Autism but i don't regret making the decision...

Darcy - posted on 12/21/2010

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I know this sounds so scary to you... I had a foster daughter with CP and she had both. The G tube is extremely easy to work with and manage. I'm not sure if you are talking also about a Nisson (sp), it basically blockes off the ability for food to come back up. She had that too. It can mean the difference between aspirating and choking and keeping food down. I don't believe it totally closes off the pathway, just makes it more difficult for foods/liquids to come back up. Personally, I am very glad my little one had it. It increased her quality of life and I didn't have to always worry...weight is easier to maintain and you don't have such stress about laying him down.
It's ok to be afraid...I think it will be alright!

Sherri - posted on 12/18/2010

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My son has had a feeding tube in his stomach for 10 years now. He started with a g-tube and now has a bard, which is essentially the same thing except he cannot pull the bard out of his stomach. He also has reflux, which at one time caused him to vomit up half his feeding. I didn't really get a choice about the feeding tube but I recommend making sure it is a last resort. There is nothing wrong with a feeding tube but since my son was put on one when he was so young, he now will not eat by mouth. He of course had other problems which compounded this but I always felt they started the feeding tube too early (he was 3 months old) and basically made eating by mouth not necessary. If you decide on the tube, make sure your son continues to eat by mouth, even if it is just a little bit.

Other things to think about is the fact that when he is on his feeding, you will have to be home or carry the equipment with you. You will have to keep him quiet and as still as possible (action seems to make vomiting happen more). The reflux will compound this. My son takes Reglan twice a day and Nexium once a day to help with the reflux. He has always taken Reglan, since the beginning. The Nexium was added 2 years ago when the Reglan could no longer work alone. I am assuming your son is seeing a gastroentologist since they are discussing feeding tubes. The doctor should be able to give you an idea of all the meds available to fight the reflux.

Research is important but also ask a lot of questions. Never take anything for granted that it is just right. There is a lot of info available and the questions, and aswers to them, help you to sort it all out.

Jes - posted on 12/17/2010

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Thank you guys for your experience and advice. I really do appreciate seeing things from all angles. Currently I'm awaiting a call from his doctor about the ph probe results. I know he has reflux, it just sucks having to get it on paper. And i know its definately worse right after he eats! Waiting game since its so close to christmas.

I'm still interested in anymore experience!

Melissa - posted on 12/16/2010

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My son is 2 yrs. old and had the g-tube and fundo surgery Jan. 2010. I was told he could not vomit or burp, he does both. Of course he only vomits when he is really sick. He had to have it done because he had vomiting spells when he was an infant and wheezing when he was breathing. Saw Pulmonologist for a while before referring him to GI. Has gone through video swallows, upper gi, some other test I can't remember name of and a PH probe. Nov 2009 had NG trhough the nose...which was horrible before the g-tube placement. He has always been in the 10th percentile with low weight. Would I do it again??? NO...having the g-tube is very hard for child and parent. Children start having aversion to foods and it is extremely hard to get them back in the routine of eating and drinking. The reflux he has can be monitored with Prilosec. It was a hard surgery and recovery. I would ONLY do it if there is NO other option. The wheezing my son had was caused by laryngo trachea malacia. He had surgery on his throat which fixed the laryngo malacia...no more wheezing. My husband and I have worked very hard to keep him interested in food and hope to have the g-tube removed sometime next year. I wish I had found someone who knew what he would have to go through before I opted for the surgery. You make perfect sense...your not alone. Best of luck and I hope this helped.

Iridescent - posted on 12/15/2010

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We give daily doses of Miralax (Clearlax, Polyethelene Glycol 3350). We started out with half the adult dose. 1 adult dose fills a med cup (the plastic ones). So half is the 15mL line. We did this for 4 days or so until Cassie had diarrhea - this was honestly the goal. She had developed an anal fistula, despite having a bowel movement daily, and was also refluxing more than usual due to her constipation. We didn't even know she was constipated! Then we dropped the amount of medication we'd give down to 1/6 an adult dose (5mL line) and gave that daily. If she did not have a BM the day prior, toothpaste consistency, the next day we'd give to the 7.5mL line. It works beautifully in the g-tube. Goal for most tube fed children - 2 toothpaste consistency BM's per day, every day. Ask your GI what goal should be for your child and work from that.

Laura - posted on 12/15/2010

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The point about constipation and the importance of treating it is very important. Our son has required stool softeners since birth (he is 11). He also has occasionally required a fleet enema if things got really stopped up (poor kid). I agree that managing your child's bowel routine is a very important step.

A gj tube is a tube that is inserted through our son's previous g-site and threaded through his stomach, below the sphincter at the end of the stomach and into his jejunum (small intestine). Kids on gn tubes require constant 24 hour feeds because they cannot tolerate large amounts of food. This means we have night nursing to keep him fed and safe. This is still quite new for us as he has only had the gj for about three months.

We also have a suction machine in the home which is good if your child struggles to manage secretions and tends to choke. Again, this is something you will want to talk with your health care provider about. We have found that we don't need it a lot with Matthew, but when we need it, WE REALLY NEED IT. Matthew can choke on saliva (and other stuff) and it enters his lungs and causes pneumonia which can often be a real problem for medically fragile children.

I know it's all overwhelming. Feel free to keep asking questions....both of all of us here, but more importantly the professionals who work with your child.

Jes - posted on 12/15/2010

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Thanks for your answers.

What is a GJ tube and how is it different from a G-tube?

Also we are prescribed clearlax, i typically give it to him if he doesnt go #2 for 3-4 days. I have been increasing his water intake but unfortunately it does take over in place of his caloric needs as well. So its a balancing act. We've had a good week so far with this.

I didnt know there were suction machines!! Geeze, when he has a cold i go nuts if i cant find the baby bulb sucker, as he'll gag and his lips wlil turn blue, so ive taken to collecting a few of these.

Iridescent - posted on 12/15/2010

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Laura has some excellent advice and experience. One thing that hasn't been discussed is his constipation. G-tube surgery and formula treatment all increase this problem, so he really should have it treated daily with something like Miralax if possible. Constipation alone will cause refluxing in any individual that doesn't typically ever reflux, so the first course of action should be to start at that end and work your way up. I'd start by treating that and see if his reflux issues improve. Regarding the top side, there are medications (oral, g-tube, patch) as well as suction machines or bulb syringes to remove saliva from the mouth when it's excessive. Some people only need them when ill, and others do all day every day as they produce copious amounts of saliva and choke on it. A fundo will not correct this and may actually worsen it, so you may want to discuss these options with a doctor as well.

Laura - posted on 12/15/2010

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In our part of the world (Ontario) fundopliations are rarely done anymore because of the complications associated with the surgery. That being said we know a couple of kids who have a fundo and are doing very well.

My son had a g-tube at the age of three for identical reasons (failure to thrive). His clinical presentation would be similar to yours (severe cp, seizures, severe reflux etc). We did not do the fundo (and I asked for it, the docs refused because of risk) and instead managed with anti-reflux meds (prepulsid, omeprazole) and continuous g-tube feeds over about 18 hours/day. It worked well for several years. However, in the last year he had considerably difficulty and a gj tube was finally put in place. Because this tube is implanted below a sphincter he doesn't throw up food but he can actually still throw up. Our son was able to come off reflux meds as a result and things are going quite well.

For our child the g, and later, the gj tube have been excellent for his quality of life. The not-vomiting part is scary I agree, but so is the real possibility of aspirating stomach contents into the lungs and the resulting pneumonia.

I would chat with your doc. I know the idea of a tube is nerve wracking, but it has been the best thing for our son's quality of life, comfort and overall health.

Alycia - posted on 12/14/2010

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Which kind of tube are they suggesting? (they can put it in his nose or belly). doing a fundo would scare the begeebies out of me if it was the nose one. The belly one is easy to deal with a vomit issue.

I don't have a child with either but two friends with one of each. The one with the belly tube will gag if she has to vomit (I'm "trained" to feed her through the tube and have done it a bajillion times)... anyways once she begins to gag, we stick the syringe in the tube and pull the stopper part out, it relieves the trapped gas or anything she's trying to get rid of. It looked scary the first couple times I saw her do it, but now isn't a big deal to me.

I'm sorry you're having to make these kinds of decisions. I agree. You can't be prepared for it.

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