Reflux-surgery?

[vicki]

Kyle has been sick all winter. In Dec they did x rays and said he had pnemonia. Well it is almost April and the x rays are no better and he just got off another antibotic and still has the congestion and cough and junky sounds in chest.
We went to a pulmonologist today and he said it is the reflux and aspiration that is causing his troubles. He is still on prevacid and i thought it was helping.
This Doc says Kyle will probably have to have surgery for this. Which when we had the ph probe done(about 6 months) it wasnt a good result either and wanted us to try the prevacaid first and see how it worked.
Has any of the kids on her had the surgery for reflux?
Vicki

[momofrussell]

www.pedsurg.ucsf.edu/conditions_fundoplication.htm

Hey Vicki! Sorry Kyle has been sick so much. Russell has always had severe reflux but did not have the fundo surgery because he never has aspirated or choked. I put a link above there to give you some info on it.

Personally, I think Kyle has gone long enough with aspirating and sounds like he does need the surgery. I hope the docs don't put it off too much longer. Aspiration is NOT good.... even once in a blue moon.

I pray all goes well for Kyle and he gets better soon!!!

A.

[vicki]

A.
Thanks for the link. I have been looking at difffferent sites since we have been to the doc. But i didnt see that one and it did help to read about the surgery.

Kyle has had trouble since he was born but we didnt know it was reflux until he was seen by the Ent at 19 months. He did a scope and said it was reflux.
Im so glad i finally put my foot down went to Pulmonnary Doc. He was very good and listened to everything wrong for the last 2 years.
Now i have to fight to see the best doc for the surgery.The surgeon that Kyle had to fix his intestines when he was born is going to be away for a few months and i dont think he can do the surgery.
My other choice is U of M and my family doc and i fight over going there.(That is another story)I aways have won to go there but i hate to have to really push him to ok it.
Sorry so long .
Vicki
Thanks again for the info.

[momofrussell]

Do you have a Ped GI doc now? Or did your regular Ped request the probe at 19 months? I too am glad you put your foot down, but I would think any decent Ped GI doc would have come to the same conclusion as the pulminary doc.

Keep putting that foot down!

The doc that did the intestinal surgery, was that a Ped GI doc? The U of M family doc, is THAT a Ped GI doc?

I guess my point to all my NOSEY questions is that you need a good Ped GI doc! LOL......

Good luck!!!!!!!!

A.

[vicki]

I have a GI doc and a GI surgeon and the surgeon had us get the probe done.
The GI doc didnt think anythng was wrong.
And the GI surgeon is going to be gone for a few months and im not sure when he is going.
That is why i want to go to U of M.
It will work out it it just take time.
Ask all the questions you want. Im always rattled trying to keep up with the autism and ds something is always going on here.
Thanks
Vicki

[momofrussell]

SHUTE Vicki... I didn't realize you HAD some GI docs already... I say get a new Ped GI doc LOL.. since he didn't think anything was wrong. He/She should have known better!

I know, I know... they are human too! LOL

Does U of M have good Ped docs? ( you are talking Univ of Mich right?)

Well, just take care of your little guy! I bet your family keeps you busy!!!!

Hugs... and it's good to see you posting!

A.

[sharen]

Hi Vicki
Yes Jordan had the operation for reflux , it is called a Nissen, Jordan had 8 pneumonia's , and they figured out it was from asperating, we did the video swallow and showed thin liquids, he was asperating, but didnt know why. Sooo the 8th time in the hospital my loving pulmonary doctor said Jordan was not leaving until he finds out why he is asperating. So he got Jordan's ENT doctor , his GI doctor , and himself , and they all went in the operating room together and did there thing. Well they found out he had terrible acid reflux ,ulcers and etc. So then the ph probe was done, and showed it was very high for reflux . Then they realized he was asperating his reflux also, so he got a G tube and was not allowed to drink anything. They figured his esophagus was so burnt and could not feel the fluids going down , just like if you had a stroke and had no feeling. So 2 weeks out of the hospital he went back in and had the operation done. What they do is put 4 small holes in the stomach area, and they go in and wrap the stomach around the esophagus. That then makes the hole in the esophagus smaller so no food or drink can get up into the esophagus . After the operation they have to eat small bites and very soft food, like pudding apple sauce spagethetti , yogurt. Then gradually start eating more solid food after a few weeks. It really wasnt that bad. What bothered me was Jordan not allowed to drink , but to be honest with you all the fluids he got all nite with the pump he never ask for anything to drink. He was on the pump for about a month and a half , then we did another video swallow, with different texture drinks with thick-it and it showed he could drink with thick-it honey texture. So Jordan has been drinking with thick-it for 7 and a half months and has not had anymore asperating Jordan has not been in the hospital for 10 months and that is a record for us So the doctors feel we will wait a year and do another video swallow to see if he can start drinking thinner liquids , which that will be this June. They thought it would take at least a year to heal the esophagus that was burnt so bad. I would give you the website but im terrible with the computer, I will tell you how I looked up Nissen . I just typed in stomach Nissen. I hope this helps . Also he may not have to have a G tube , so I hope you don't get upset , because Kyle may just have to have the Nissen done , and nothing else. Jordan still get's congested and Junky but he also has seasonal Asthma. He is on Flovent and Albuteral. Also I think I would try another GI doctor. Good luck , keep us posted
Sharen

[Emilysmom]

Vicki~
I'm so sorry Kyle has had to go through so much this winter! Please keep us updated.
Hugs to you!

Susan

[laurasnowbird]

Hi Vicki,

I answered your other message, related to Reglan. We were asked to consider the Nissen Fundoplication for Ethan, but declined because he has never had aspiration pneumonia. (knock on wood). He has been on Prevacid for two years to reduce the acidity of the stuff coming back up and prevent erosive damage to his esophagus which could lead to cancer, among other things.

We had Ethan's intestinal surgery done at U of M by Dr. Arnold Coran. I'm not sure how he and his ego manage to fit in to the surgery room together, but I guess it's a good thing to have a confident surgeon, LOL! He did an incredible job for Ethan, and is one of the top-ranked pediatric surgeons in the country. I don't personally like him much, but I'd highly recommend his skills, if you know what I mean.

Is Kyle walking yet? I know one of the reasons we waited on the fundoplication was because we thought gravity might be our friend, LOL! And his reflux did diminish greatly when he spent most of his time standing. It's a tough call, because the surgery is pretty much irreversible, and one of the things that concerned me about it is the fact that they are unable to throw up. I was concerned that Ethan might swallow something poisonous that I NEED him to throw up. The pneumonia is a seriously complicating factor though, and you might have to go through with it. Good luck to you in your choice.

[vicki]

Laura,
I was just wondering who your Gi Doc was.
Dr Downing (Kalamazoo)did Kyles atresiaSurgery. He is really a super man and surgeon. He saved Kyles life.(thats another story).
Dr Downing is in the service until July.
We also saw Dr Lopez at Uof M. (GI)
A surgeon from Grand Rapids is covering for Dr Downing.We see him next week. It will be a second opinion at least we can see what someone else thinks.
I also answered the other email from you.
Vicki

[vicki]

Laura,
Sorry i kept forgeting what i am doing. I forgot to answer you question.
Yes Kyle is walking. He had to start to keep up with his brother.
Vicki

[stickkop]

My son Benny had the fundo surgery and G tube placement due to multiple aspiration pneumonia's on March 1 2004. So far this has stopped the aspiration infections. It is a big deal and requires a lot of post op care, but my little boy would not be alive today had we not done the surgery

Steven

[happymomx8]

I am new to this board but Kyle sounds just like our son Caden. We have been searching for answers but seem to be coming up with very little. Caden has had pneumonia a number of times, he also has asthma. Last June he had a swallow study which showed he aspirated and was put on honey thick feedings, in Sept that was changed to nector thickening. He continues to stay sick, he is on oxygen at night due to the fact we can't get his oxygen level above 90 even during the day. At this time he is on 20 days of antibiotic, flovent, albuterol, singular, and previsid (sp?), the pulm. doctor wanted to put a NG tube in but we wanted to wait. They are hoping to get a sleep study done on him as well here very soon. I would appreciate any thoughts and ideas you might have.

Polly

[vicki]

Kyle just had surgery Friday. He had a hiatal hernia. So if i understand that was causing the reflux and aspirations. The doctor fixed the hernia and did the fundo (wrapped his stomach around his esophagas) also to stop the aspirations and reflux.
So i will let you know how he does but after seeing the picture of the hernia i am sure he is going to be better.
Have you ever had a scope done? Or ask if they think it could be a hiatal hernia?

vicki

[Deannalee]

Vicki,
Justin has always been a refluxer aspirator. We knew from the time he was a micro preemie in the NICU. I attempted to breastfeed and all milk PO caused him to have A's and B's. They determined then that he was a silent aspirator. He was on og feeds at the time. At about 4 mos old he had a G tube surgically placed. We had met with GI and he said that if the prevacid and Reglan were working with the GT that would be great. If not, then we would move to a JT. Well, he continued refluxing and aspirating, so last May 2004, he got the G/J tube. He is now 100% JT fed. This actually helped him to finally gain weight....and too quickly. Because the JT feeds are working and have drastically minimized the reflux/aspiration, we have not had to have the Nissen fundoplication done. At this point in time I do not feel he will get it done. However, not all Dr's follow this plan. Many go ahead and want to do the Nissen. I believe one of the reasons he did not push for it was due to the fact that Justin's laryngomalacia was also causing swallowing difficulties and had never been PO fed. That said, your Dr may want to go for the surgery. I would just do what I always do....research and ask other parents how their kids have done. it sure helps a lot when you network with those who have been there/ done that. Good luck.

Deanna