G-J tube/ Nissen

[anonymous]

My daughter is having a lot of reflux issues including what may be chronic aspiration (indicated on results of lung CT). She already has a g-tube and is maxing out on reflux meds. Our suggested next step is modifying to a G-J tube. Does anyone have experience with this? If so, did it help the reflux?

I would also like to know if anyone has or has a child with a Nissen. My husband and I are very wary of this procedure and its results, but I would appreciate any comments, positive or negative. Thanks!

Maria (mother of Sami, 2 years old, w/cf)

 

[Jenni]

Hey Maria long time since we talked, as you know Gabrielle has had a nissen and g-tube( she know longer has the g-tube). The are pro and cons to the nissen. Some cons are the surgery she had lasted about 4-5 hrs. she can know longer vomit nor will she ever be able to. When she gets the flu or as the need to vomit she can't and it's very painful, she usually dry heavs for about 5mins. It reminds me of someone who has something lodged in their throat and is gagging. A pro is they never vomit again which in some ways is great when your dealing with reflux because it is not burning the esophagus anymore, and destroying the lining in the throat and stomach. Another con is depending on how they do the surgery it could be a fairly large incision. I'm 65% con 35% pro on the procedure but it may be due to the fact that we had such a hard time after her procedure. Gabrielle got really sick and got rodavirus and it was so bad she was actually vomiting out of the hole of the G-tube because of the force of the illiness, But everyone is different and react differently Samantha might do great and it may be the best thing for her. If you do end up doing make sure she has good pain medicine afterwards, I would suggest an epidural because it manages the pain for at least 24 hours and their very comfortable. When Gabrielle had her kidney surgery she had an epidural and it was heaven compared to when she had the nissen(she didn't have an epidural) she was miserable after the nissen and they had her on moriphine and it wasn't working. What ever decision you make I know it will be the right one for you and Samantha I hope and pray what ever decision you make will be successful. Besides you have a great team on your side. What GI doctor are you seeing or are you seeing one. They want Gabrielle to start see one I was just wondering if it was the same one.
Talk to you soon
your in my thoughts and prayers
Jenni

 

[anonymous]

Hi Jenni,

Thanks for the comments. Lloyd and I are very "con" at the idea of the Nissen for just some of the reasons that you pointed out. But sometimes I think if nothing else is working and Samantha continues to have lung flare-ups, it might be what she really needs. I didn't realize the surgery was so extensive and painful.

We see Dr. Sontongo. He has made some positive changes in Samantha's G.I. issues. He thinks things through and is very patient and kind.

How are the kids doing? I hope they are healthy and enjoying the summer. I think of all of you often too. Will you be attending the support group meeting in Westchester on Wed. night? I have met some great couples through our group.

Maria

 

[Jenni]

It's good to here from you to. Dr. Prestridge is setting up an appointment for Gabrielle and Dr. Sontongo I'm looking forward to the appointment and hoping he has some positive imput into Gabreille's GI issues. The kids are doing great so far, we go back on July 12th. We just moved 2 weeks ago so things have been crazy needless to say. It has been so hot out I've been trying to keep the kids in the house as much as possible since Gabrielle doesn't do good with extreme heat she gets heat exhaustion easily. Other then trying to unpack and stay cool and keep 3 very active kids healthly everything else is the same. I don't remember if you said you went to childrens for the appointments or if you went to one of the other offices. Dr Prestidge will hopefully start going to westchester in the fall I hate the drive to the hospital in morning rush hour. I wish I could get to one of the support group meetings but I never know when my husband is getting home from work and in the summer it usually is late. I really was looking forward to meeting you one day you have helped me so much threw all of this and been a great support when I was having all of those problems with the old doctors. When I was at Childrens 2 weeks ago the social worker (Mary Alice I believe is her name) asked me if I had talked to you lately and I told her it had been awhile since I had been online and spoke with you, she said if I had talked to you to say hi. Well it was nice chatting with you and I look forward to talking with you soon.
Always in my thoughts
Jenni

 

[cfmomma]

This has nothing to do with a g-tube, but I was curious about what clinic you are talking about. My son sees Dr. Prestidge at Children's Medical center of Dallas. Is this the same Dr Prestidge you are talking about? We think he's awesome!!! On another note, what is a Nissen and what is the difference between that and a g-tube? Thanks

 

[Jenni]

No the Dr. Prestridge were talking abot is a female at Childrens Memorial in Chicago. That is quite intersesting that the have the same name though. A nissen is a surigical procedure that ties your stomach around the esophagus to not allow vomiting and reflux.

 

[anonymous]

Hi Sheli,

We should ask our respective Dr. Prestridge's if they have a family member who is also a doctor. As Jenni said, a Nissen is a sort of "wrap" of the esophagus for those suffering from serious reflux. A gastrostomy is a surgically created opening in the stomach. A gastrostomy is needed if your child is not able to eat enough to help him grow. Extra food is then given through the G-tube.

Sami gets feedings through the g-tube overnight. The problem is that these night feedings may be worsening her reflux since she gets pumped up with all that formula while sleeping in a horizontal position. Our alternatives besides the very invasive Nissen may be to try the feeds during the day. But finding the time to give slow feeds is a problem.

The G-J tube takes the opening in the stomach and adds a tube that feeds the liquid right into the small intestine. The doctors feel that this may solve the night feed reflux problem.

Maria

 

[JazzysMom]

My former supervisor at work has a son 5 months younger than my daughter & he has CP. He was having extreme difficulty with lung infections & gas reflux. They actually tested him for CF because of his failure to thrive & the infections. They had this procedure done on Daniel. I never knew the actual name of it tho. His weight has improved & obviously he gets his nutrition from a G tube. He had a rough winter this year, but as a whole has improved greatly since having it done. He was about 2-3 when it was done & he will be 7 in August.

 

[NoDayButToday]

Out of curiousity, what is the difference between a Nissen and a fundoplication?

 

[Jenni]

They are the same thing just a different name. The surgical term is called fundoplication. But alot of people call them a nissen.

 

[anonymous]

I had a nissen back in 1991, @ age 11 an it has held up since. Before hand it was almost a year that I had not really held down a meal. Even though it was over a decade ago I recall pretty much after the healing fase how great I felt. I held food in, an began to grow an felt overall better.I'm guessing b/c I actually held onto food an nutrients.

Also as mentioned there is no more vommiting after the surgery. About the only bad thing is when you get that "feel" that you need to vommit; and it is not really that bad.Cough/heeve the feeling subsides after a few attempts.

Byron w/ C.F.
Post Tx

 

[anonymous]

Maria,

My daughter, Hayley, who is now 16 months old had a Nissen done when she was about 3 months old. Her problems all started with severe reflux, failure to gain weight and always sounding raspy. We end up admitted to the hospital because she was aspirating formula into her lungs, causing her breathing problems, she was even on a ventilator for a while. We went home after the Nissen, thinking all would be fine only to continue to have respiratory problems and end up back in the hospital the next day. Then came the sweat test and the CF diagnosis that changed our lives.

She does have a fairly large scar about 3-4 inches vertically down her belly, but it has faded significantly. The surgery was a god send for us! She was three months old and still only weighed about 9 pounds! She did wonderfully after the surgery and has continued to do very well, except for a few respiratory infections treated with oral Augmentin. We really have not had any adverse effects from the surgery. I know there are bad stories out there, I remember finding a website with a message board of people posting about their children's Nissen surgeries and the horror stories, I would cry when I read them before her surgery, but like I said it has been wonderful for us. Hayley is now 16 months old and weighs about 24 pounds. She eats and drinks normally and is a little gassier than most kids, but that could be from the CF too. Anyway, I will quit babbling. Our surgery was done at Lutheran Hospital, Fort Wayne, Indiana, by Dr. David Smith, who is a pediatric surgeon and he is awesome!!! E-mail me at Quaintancer15@msn.com if you have any other questions!!

Becky, Mom to Nathan 4 (W/O CF) and Hayley, 16 months (W/CF)

 

[Jenni]

Becky,
I so glad you had a good turn out with the surgery, it just shows how everyone is diiferent. I wish Gabrielle's surgery would have been as sucessful weight wise. She weighed 15 pounds at 1yr of age and she is 5 now (6 in January) and she only weighs 34 pounds, the same as my 3 yr old. She can't gain weight for anything. Hopefully on day the weight will catch up with her.

 

[anonymous]

Byron and Becky,

Thanks for sharing your experiences. It sounds like the procedure has done wonders for both your situations. Becky, I will try to e-mail you soon with some questions, thanks.

Maria