:pale: Hi all GERDling parents. My son Tavin has been suffering from silent reflux for all of his 9 months (7 months corrected). Tavin's long list of symptoms include: vomiting blood, bloody stools, chronic anemia, aspiration pneumonia, sinus infections, ear infections, sleeplessness, chronic cough and wheezing. There is probably more that I cannot remember. He has had two swallow studies, upper GI, EGD, Sigmoidoscopy, and bronchoscopy. All confirm what we have known for 9 months...he has severe reflux. Tavin has gained weight normally in the past, but we have concluded that it feels good going down. Tavin never really puked a ton except when he was very young. At some point he got strong enough to reflux, ruminate (chew it up in his mouth), and swallow it back down (I know that is gross :sign11: ). Little did I know this meant double trouble for his esophagus, lungs, trachea, vocal cords, and nasopharanyx. The bronch showed severe inflammation all the way up and down with bleeding. Tavin has slowed his eating and drinking, which has already been a challenge since we found out he is allergic to cow's milk and soy. We were so frightened by this we took him to the ER because he only peed 1 time in 1 day. He has failed to gain weight since Oct. 27th. We will be seeing the GI doc on Dec. 2nd to discuss the dreaded fundo. We do not know what else to do. At this point he has maxed out his meds. Does anyone have a the same stories? Any advice or other options? Are we going to have to resort to G tube? I am so worried. He has had so many procedures and one put him in the PICU because his lungs shut down during anethesia. Thank you for letting me vent! :smt102 [/img]

Hi and Welcome!

You just described my son Eli to a T. He had all those same issues and we had the fundo. It was the best thing we ever did for him. If it was just for reflux I would say NO WAY! because he still has issues but the surgery took care of all the other crap he was going through because of it :D

We waited until Eli was 2 1/2 though because it should only be done as a last resort. The longer you wait to have it done the better because when they have it done young it will probably need to be redone as they grow and they do a lot of growing when they are under a year!

How much does he weigh? What percentile was he in? Our son was never low on weight, well for him he was, but he was always huge, it was all the illness, infections, and inflammation, low immune system that caused us to finally do the surgery. He has not been sick since! :D :D :D

I hope you have read about this surgery and know of all the complications and side effects, It doesn't cure reflux just creates different problems, but for us these other problems way out weigh the other. He now has swallowing problems, wretches, gags, and can't run to much or gets sick, and he is hard to discipline because when he gets upset he gets sick! But, he is no longer sick like was, is healhy, and acts like a normal happy child, and his development is back on track.

Ask me any all Qs. You can PM me or email me too :)

P.S. if you do decide on the surgery make sure you get a VERY experienced surgeon. It makes all the difference. Our surgeon was the chief of pediatric surgery at UCLA and he knew what he was doing. I am very thankful!

Hello & Welcome,
I can say as well you have described my sons symptoms when he was younger as well. I think alot of these kids follow the same path. Oh & By the way I am also a mommy to 4 :)
Any how, my sons story has turned out oppisite of our little friends Eli's. Noah's story can be found at this web site @ http://www.infantrefluxdisease.com/noah.htm
Boy, what a hard decision for you to make beings your little guy is so young. Noah had his 1st fundo when he was around 3 years old but, suffered from undiagnosed Silennt GERD and all of the problems that went with from his 1st day of life. He was diagnosed at 18months. We tried all of the meds known to man-kind for over a year with no avail. It is always a hard decision. The only thing I can suggest is insist on Motility Studies. Not the scans the true Motility Testing, it takes usually 2 days in the hospital for the tests to be completed but, it is so important to rule out underlying Motility Issues before the nissen is decided on, because it is proven that children with even mild motility issues never have good outcomes from the Nissen Surgery.
Also, about the g-tube, my son did not receive one during his 1st surgery it was several months after his surgery. I know Eli never has or needed one. Proof again that the Nissen can effect each and every child very differently. My theory is this, the surgery can sometimes be like trading one evil for another and who's to say which one is better. I can say that even after all of the problems my son has had with the Nissen he is still doing better then he was before the Nissen.

Sam had his fundo this summer. For the first time in his short life he is finally keeping food down. He also had a G-tube, but that was mainly because he was aspirating his food and does not swallow well. He seems to have more going on in addition to the reflux--neuro issues????

The fundo has solved most of Sam's reflux related issues, but was done as a last resort. It is a hard decision to make.

Thank you so much for your input. I cannot believe that you all endured all these horrible symptoms for so long. Tavin is almost 10 months and I could not possibly survive another 2 years with all of this. How did you do it? I think that is why we are willing to do the fundo. But after hearing some of your stories I am totally confused at what is the best thing for him. I am just wondering if trying the G tube first to see if we can give him a little time to rest would be an option.

Tavin also has neuro issues. He has seizures in addition to everything else. He had 2 IVH (brain bleeds) and meningitis when he was in the NICU. Aside from that, he is already at risk for developmental problems due to being premature. The thing that worries me is with him not eating very well he is not getting the nutrients he needs for his brain. All the literature talks about a baby's growing brain needs certain vitamins and minerals and Tavin is definately not getting them. He is only eating one meal a day of rice cereal and piddles around with formula and probably only gets a total of 6 ounces a day. The only substantial thing I can getting down him is orange pedialyte, which of course comes up orange and stains everything. :smt078

The doctors have never mentioned anything about motility problems. As far as I know his barium upper GI showed normal emptying. Are there particular sypmtoms that I would notice?

I am outraged at the stories I have read about doctors disregarding the parents concerns. We have been fortunate to have doctors at Vanderbilt Medical Center and have an awesome pediatrician.

I am so glad I found this sight. Nobody understands what we go through except all of you! Thank you, Thank you!! :hug: HUGS TO ALL!!!

We have great docs too, it has been such a blessing! I am glad you found us and ask any Qs you have. I have to run to church!

I would like to say hi and welcome to the board. I do understand what you are going through because I have three children that have had to have fundos done due to similar problems as your son. I do know that this is a very difficult decison for you to make but it does sound like that there is nothing else to do for this child. I do know that it should only be used as a last resort when there are life threatening situations and or there will be permanent damage done.

My children were ages 7yrs,5yrs,and 18months when they had their fundos done. My dd did wonderful and was a life saver for her. Her fundo is still intact,five years after surgery. She is on reflux meds presently due to refluxing past the fundo but it is still nothing like it was in the past. Now for my sons they both developed many complications following surgery. What I have learned from this is that I wouldnt allow a fundo to be done with out having having a gtube placed at the same time. We did learn this the hard way because both of my sons required gtubes several months following the intial surgery.

I have no regrets about my children having the surgery but do know that there are many risk with this surgery and a whole new set of problems can arise from it. I know for us that it was the right thing to do but it still was a very difficutl decision for us to make.

If you have any question please feel free to ask. You can pm or email me anytime. I do wish you luck.


Melanie.

Hi,
So sorry you have been going through all this. This road does stink, especially after all the trouble he had in the beginning. Hannah was 10 weeks early and started refluxing on day 3 in the NICU. What kind of formula is he on?We had started Hannah on neocate after her surgery, which was helping before we ran out. We are trying to get more through WIC while we fight our insurance company. Hannah seems to be allergic to milk proteins and all cereals. She tolerates Breast milk okay, but has some issues. Right now we are giving her all of my frozen BM through her G-tube while we wait. Before we did the G-tube we did the NG tube to see if it helped. She gained weight well but all the volume turned her from a silent refluxer into a projectile vomiter. She had spit up a lot in the early days but this had stopped when she learned to limit her volume. We are 3 weeks post-op from the Fundo and G-tube surgery.We were only going to do the G-tube but her surgeon felt that the fundo was needed because of the severity of her reflux. He thought that if we just did the G-tube we would have a lot more vomiting and we probably would have had to go back in again.She had a great surgeon, and he did the surgery Laparascopically. It has helped her, but those first 2 weeks were very rough.She was in a lot of pain and had a lot of gas we couldn't get rid of.After 3 weeks it has gotten a lot better. I won't say she is cured because we still notice some things(hiccups-which used to be her reflux sign and possibly a little refluxing with too much volume?)But she is a lot better. Our biggest problem now is weight gain while we wait for the formula. She is supposed to be on 24 cal formula(30ozs aday)Since we can't fortify the BM she isn't gaining.
This is a very hard choice to make. We feel this was the last and best choice for Hannah since nothing else was working and she just seemed to be getting worse.
I would also agree with Melanie about the g-tube going with the Fundo. Without the G-tube Hannah would have had a lot more complications from all of the gas. We had to vent her all the time those first few weeks. Her belly was hard as a rock before we would vent her.Venting helped to get rid of a lot of the gas.
Sorry if I rambled. I tend to do that. :oops:
I am also here if you have any questions. We are still new at the fundo and g-tube, but not reflux.