My son Nicholas is 8 mos. old and is a twin. They were born 6 weeks early after a long stay in the hospital on bed rest. Nicholas was born in respiratory distress, and immediately placed on a ventilator. After just a week he was able to be extubated, but had to wear oxygen 24/7 until just this month. He was of course also diagnosed with GERD. Ours was called invisible reflux though, because we were not seeing visible spit up, like with his brother Carter. Now Carter has reflux, but is very healthy. In April Nicholas finally had a G-tube inserted after months of not eating, and having an ND tube. The confusion on my part is that I have allowed his Pulmanologist to take over most of his primary care, and we have never even seen a GI doc., and in turn I am now reading stories of other children, and I am seeing that Cole (Nicholas) doesn't share a lot of the problems they have, or the severity. My concern is there is something else going on with him, and we are missing it. I should mention, that this particular doctor wanted to have the surgeon perfom a Nissen without ever having done a pH probe, or an endoscopy of any sort. Thankfully the surgeon did not agree. I am going to get an appointment with a GI dr. and hopefully get some answers, but I was thinking that maybe someone out there may have gone through a similar situation.

Hi Necole,

Welcome and thanks for joining us! We're glad to have you!

It's important to know that reflux can cause a lot of bad respiratory problems and I think that someone should have told you before they did the G-tube that doing a G-tube without a fundo is just asking for reflux problems. Gastronomy surgery increases the pressure inside the stomach and on the LES, which makes reflux worse...it's even caused reflux in people who didn't previously have it, so much so, that many surgeons won't do a g-tube without doing a fundo at the same time, even on people who didn't already have reflux.

It seems as though many doctors who do not specialize in gastrointestinal disorders are very quick to decide on a fundo for reflux kids and I think it's because they just don't realize how many problems it causes. They just assume it's a cure. Most of the time in these cases GI's and surgeons will disagree and say no to the fundo.

Anyway, thanks for joining, I look forward to getting to know you.

Roni,
Thank you for getting back to me so quickly. I know now that we need to see a GI specialist as soon as possible, and hopefully get started on the right track. We are off to feeding clinic today to see what nonsense they have to give me! :lol: Thanks again.
Necole F.

What happened with the feeding clinic?

As usual we sat for an hour, and I listened to a speech therapist, and an occupational therapist grasp at straws. They really had nothing new to add except to try abdominal massage, since I am an LMT. The ST suggested doing another rehap swallow study, which I quickly said no to, it would be his 3rd, and I am sure it would be like all the rest. Just Fine! I just told her that before I agreed to any more of those tests he was going to have a pH probe, and or, an endoscopy. And of course they just aggreed with me that we need to see a GI specialist, acting supprised to find out that we hadn't already seen one. Which is so funny to me, they have been seeing Cole since he was about four months old, and are very aware of the doc.s we see. I know I sound a little snappy, but it is son frustrating to be sent all over town to these "specialists", and to feel like you know more than they do. Now I am just waiting for a call back for a referral to our GI Dr. in Spokane. We only have one so I hope he can help. I do hope you are doing well, and thank you for your correspondence.
Necole F.

Sounds like most of the appointments we've had with Shae over the past few years. I hope you get some answers with the GI, when do you see him?

Keep us posted.

Yeah I'm sure it sounds familiar. We have an appt. set for the 26th. I'll be sure and let you all know. Thanks.