Here's Kristina............
"For what it is worth, here is my two cents worth on Fundoplication (Nissen)
surgery in general:
Before starting the blended diet, and eliminating formula, we were told many times my daughter needed a G tube. One of the reasons I was so against the idea was because I was told that most doctors would want to do a Nissen (Fundoplication) as well, due to her projectile vomiting, which she did 3 - 6 times every day. I was told doctors in my area were routinely doing a Nissen when placing a G tube. I believe the complication rate was high enough that they no longer do them routinely.
I asked the nurse at the Cincinnati Aerodigestive Feeding Clinic, what the complication rate was for a Nissen. She said it is about 30%, which seems really high to me. Part of the problem with that surgery is that it is subjective. What I mean by that is the doctor has to decided how tight to make the Nissen. If it
is made too tight, solid food will not be able to enter the stomach easily, and you get gagging, wretching, etc. If it is made too loose, the patient will continue to reflux/vomit/possibly aspirate. There is also the possibility of causing nerve damage that can contribute to the wretching issue.
For those of you who don't know, when they do a Nissen, they basically pull the top part of the stomach up around the bottom of the esophagus, and sew it in place, with the intent of creating a one way valve. Hopefully food can go in, but not back up in the form of reflux or vomiting. This surgery does reduce the
volume capacity of the stomach, which can become an issue, especially for those who already had low volume tolerance to begin with.
In a person with aspiration issues, doing a Nissen can be life saving. There are people who have had the surgery, and have done very well afterwards. Those people are very happy they did it, but don't tend to be nearly as vocal about the surgery as the people who have complications from it.
Sadly, for some people, the Nissen causes more trouble than it solves. Those who are sorry they did it, feel (perhaps quite rightly) compelled to warn everyone of the negative possibilities. I think that is why most of what I hear about Nissen surgery is negative, and often pretty scary.
I think used very judiciously, Nissen surgery can be a good thing, like I said before, life saving in some people. Where I get concerned though, is that often there is not enough investigation of the cause of the reflux/vomiting/oral aversion prior to surgery. I am afraid surgery is sometimes being used to treat
symptoms, instead of identifying the cause of the symptoms. Vomiting/reflux/oral aversion can have many causes, but just be very sure to eliminate food allergy/intolerance as the cause BEFORE you have surgery.
And no, just trying someone on Elecare or a similar formula is not considered a sufficient investigation in my book. Not everyone tolerates Elecare despite what the doctors say, it CAN cause issues. I know several kids who couldn't tolerate it at all. I think it should be a criminal offense to alter someones anatomy
like that without first doing an elimination diet to rule out food allergy/intolerance issues.
If you are thinking, what about allergy testing? It is often not reliable either. (A topic for another post perhaps.) In my opinion, an elimination diet is really the only way to know for sure what someone can tolerate.
The medical community doesn't as yet have a very good understanding of the many interactions between food, and the digestive system. They know even less about the role of the immune system in reactions to food.
If it wasn't for me finding the blended diet, and starting my daughter on a hypoallergenic blend, she would have had surgery. It was scheduled for two days later, but she did so well on the hypoallergenic blend I made her, I was able to cancel the surgery.
I had been told repeatedly, her vomiting was a result of her brain injury, and something we would just have to live with. Once I figured out everything she doesn't tolerate, her vomiting went away. Her oral aversion is gone now, but she still has texture issues, probably because her esophagus doesn't contract well. With blended diet, my daughter, is now able to happily, comfortably and independently meet her calorie & nutritional needs, something I consider miraculous when thinking about where we were back in Sept 2009.
So my word to the wise, unless it is life threatening, don't do surgery for reflux/vomiting/oral aversion without first trying an elimination diet to rule out allergy/intolerance as the cause. Maybe you will get lucky and not need the surgery at all."
Warmly,
Kristina
Retired ICU RN, BSN
Mother to Morgan, 3 years old, former 26 week micro preemie with a bilateral
grade 4 brain bleed, cognitive delay, communication disorder, mild cortical
visual impairment and feeding disorder. She takes her blends orally, in her
bottle.
I completely agree. Before I began a blended diet for my son, he was Infatrini Energy and would projectile vomit at least 3 or 4 times a day, it was awful. Now we have drastically reduced that and he manages to keep his food down and is doing well. Thanks for this post and for this blog it's great to get a view on the blended diet. Linzi.
ReplyDeleteWise words....try and avoid the fundoplication if at all possible. My son was born with EA, didn't do the fundo when the surgeon wanted to, we waited. He did have one(fundo), then a second several years later. The first one was ok, the second not so much. He suffered a esophageal perforation following the surgery and it wasn't discovered until 5 days later. Had to "take-down" the second fundo, and do a third and MUCH tighter wrap to cover the perforation which was approx an inch long. There is nerve damage and lots of other lovely things that don't work right :) Anyhoo...now he can not eat solid food, and drinks VERY little. Prior to the fundo he was actually eating a bit and we were progressing with oral feeding. In fact, we were close to removing his g-button. Now he will be fed via g-tube for the rest of his life (he is 11 y/o)
ReplyDeleteGive this surgery a lot of serious thought, yes he needed it or we would not have done it, but there are some very serious life altering complications that can and do occur.
My daughter was born at 34 weeks, weighing 3lbs. She has Turner’s Syndrome, and had heart surgery when she made it to 6lbs, about a month old. She was only being fed through an oral feeding tube before surgery. It’s now been a month after surgery and everything is looking good except her ability to eat. She gets 70ml every 3 hours, and tries a bottle 4 times a day. What she doesn’t finish in the bottle is fed to her through her tube. She is having aspiration reflux, but nothing that isn’t manageable in my opinion. They’ve thickened her feeds, we hold her in an upright position during feeds and 30 mins after, but she is still refluxing a little, wheezing, and coughing occasionally. The doctors are pushing a Fundo and g-tube on us. I’ve voiced my concerns about the fundo and they are still trying to push it on us, rather than giving us other options. She’s not actually asperating, she’s just getting really close. I don’t think the fundo is necessary at this point, but she’s only drinking 20ml out her needed 70ml through the bottle, because she gets to tired due to her heart condition. I do feel that she needs the g-tube put in, but I’ve also read that getting the g-tube without the fundo can worsen her reflux. She’s on breast milk with Gerber cereal to thicken it, and elecare to add extra vitamins to the milk. I’m going to insist that they try giving her my milk without the elecare and see if that helps any. If it doesn’t I’m not sure what else to do. They refuse to send us home with her current oral feeding tube because they think she to at risk for aspiration with it. Although I think she’s doing fine with it. When I hold her upright during her tube feedings and a little while after she doesn’t reflux as much and seems way more comfortable. I am very against the fundo due to all the negative litterateur on it. Does anyone have any suggestions on what else to try? I’m starting to feel hopeless because the doctors aren’t giving us much options, even though her speech therapist and occupational therapist agree with me.
ReplyDeleteSorry if my post is all over the place. I’ve been up all night researching, and trying to make the best decision for my daughter and I just don’t know what to do or who to go to.