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Message Icon Topic: I hope I'm posting in the right place. Upper endo? Post Reply Post New Topic
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Nikki&herfour
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Quote Nikki&herfour Replybullet Topic: I hope I'm posting in the right place. Upper endo?
    Posted: 08 February 2012 at 4:53pm
So, my son is almost 4 months old. He has had reflux from day one. He is breast fed only.

So far he has been on zantac then prevacid, then zantac & prevacid and nw zantac and nexium. Last week he had a probe done for 12 hours. He did TERRIBLE. It was done with meds on board as well. He his numbers stayed mostly in the 3&4 range but also dropped into the 1&2's several times for 10-15 minutes at a time. His Dr. said he did terribly on the test. Exp. since he was medicated at the time.

That's when he added the nexuim and took the prevacid out. Today his dr called to check on him and get an update. He was not thrilled to hear that Zachary is actually doing worse. The last few nights have been the worse.

Here are his symptoms;
spitting up
crying
hiccups
drooling
arching back
trouble nursing (not a latch issue)
reswallowing
gagging
a lot of tummy grumbling
And most recently weight loss. About 8oz in the last two weeks. He's not FTT. He's 16pounds, was almost 17. So he's not small but the weight loss is concerning.

Today his dr said he can't do anymore for him and he's sending him to a pediatric GI for an upper endoscopy.

This scares me so much. He's so little to be sedated. I'm just looking for some support, thoughts, facts...Anything..
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kevieb
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Quote kevieb Replybullet Posted: 09 February 2012 at 4:58pm

a probe really is not a scary thing.  they are not put under very deep.  our ped gi actually let me stay in while one of my girls had her probe done.  i stood right next to him and hald on to her hands to keepher from putting them up to her mouth--that is how lightly she was out--enough that she wanted to pull at the scope--but out enough that she did not remember a thing. 

the ph probe was not done correctly, it should be a 24 hour probe and they should be opff of medication--not sure why your doc chose to do it for a shorter time and while still on meds.  what was his overall percentage of refrlux for the time the probe was done, how many reflux episodes and how many were extended episodes--over 7 minutes.
 
ask to see the graph for the ph probe--make sure you specify that you want a copy of the graph--not just the doctor's report, or all you will get is the doctor's interpretation.  i found the graph to be very interesting to look at.    what is your doctor's interpretation of "terrible"?  it is the percentages and extended episodes of reflux that you need to know.    i can't remember what numbers indicte reflux----it's been too long since sylvia had her's done.
 
however, i do remember that there were times when i could see that she was refluxing because the levels were indicating acid---and she didn't even flinch---and she had an esophagus that was getting ulcerated.  she was refluxing almost 25% of the time and her longest episode lasted 44 minutes---while she was sleeping.   the doc said she had never known anything different. 
 
i think the endoscopy is probably a really good idea to see if and how much damage your son may have from the reflux.
 
i have had 3 children that have had scopes and i have had 3 of them myself because i have really bad reflux and have had to have my esophagus dilated.  i woke up during the last one---but all i remember is them tellling me they needed to give me more medication, and i was right back out. good thing i didn't remember anything more--i would not have been very happy with my surgeon.
 
my daughter actually had to have a fundo--it was done about a week before she turned 10 months old--she only weighed 16lbs 7oz at the time---and 7 weeks later she still weighed exactly the same.  the surgeon santed to put in a feeding tube, but the gi said to give her another month--and i managed to get enough weight on her to avoid the tube.
 
you actually sound like you have a pretty pro-active doctor to do as mush as he has already before even sending you to a ped gi.  the weight loss is concerning.  that is when our ped gi decided we needed to do testing--when he realized sylvia was not gaining weight.    i had no idea how bad her reflux actually was until we had the scope done and the ph probe.
 
try not to worry, i know it's hard when they are so young--but you need the info that the scoped will give you.
 
when sylvia had her fundo done--it was discovered that she had a large hiatal hernia that had not shown up during testing.   she has never had any problems from her fundo. she can burp--but she cannot throw up---so, every time she gets nauseated, she just spits into a bowl.  i give her pop and crackers to try and fend off the nausea and she usually gets through it woithout too much complaint.  she is 8 years old now.
 
i am really glad we did the testing, or we would have never known how bad her reflux really was---and i have never been sorry that we had the fundo done---we really had no choice.
christine

leif 83
daisy 85
ian 89
kassandra 91 reflux celiac
tianna 91 reflux celiac
molly 95 celiac
elliot 97
samantha 99
sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04
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