Feedback on Dr. Cotton

[georgana]

Hi Everyone,

My son had 1 failed attempt at decannulation after subglottic stenosis repair.
I have made an appointment now to see the famous Dr. Cotton in Cinci.
Have any of you had experience with him? I hear he is the guro of Tracheostomies and Decannualtion. Any feedback would be helpful as I am nervous. They want to do a whole array of testing which even includes biopsies of the stomach and esophogus even though my son has no symptoms of reflux.

mom of former 24 weeker now 27 months old and trach dependent however off of vent and oxygen for more than a year.

[Ainsley's Mom]

Without knowing more about your son's medical history it would be impossible to speculate. But Dr. Cotton is very well respected around here (and everywhere else). I would hope there is something in his medical history that would indicate that the biopsies are necessary to rule that out as a contributing factor since reflux can be silent and cause damage to the airway. I would ask the question to the nurse in charge of your case and see what answer they give. Perhaps that will clear it up for you, or you can call and simply say you don't think it's necessary and see what they say. I hope you get some answers so you don't feel like he's getting unnecessary tests.

I can also tell you that they have a team approach so the GI doc is present at the laryngoscopy/bronchoscopy and my understanding is that they run the scope into the stomach through the mouth so it's really easy to add that on since they are there setup to look already and while they're in there they get a tissue sample for testing while they are in there already. Then they all discuss the case together. It's a great opportunity to look at all the possibilities at one time. Not many clinics do it that way.

Hope that helps.

[LKN]

If you are taking the time, effort and expense to see Dr. Cotton you should let them run whatever tests they want to run. Your child has already had a failed decan because of an unsuccessful surgical intervention. There is no way to diagnose the issue(s) unless appropriate tests are done. The first attempt at decannulation could have failed because of silent reflux--maybe not--but the tests are necessary to rule it out.

A majority of Dr. Cotton's patients come to him after another doctor has been unsuccessful at removing the trach. He is an excellent doctor. Trust the wisdom of his experience.

[Ann]

I echo what Kristy said. Dr. Cotton and his team have a set protocol for all new patients and it's unlikely you'll be able to opt out of any of the tests they run. Dr. Cotton sees more airway patients than any other ENT in the country and the tests they do are based on years of experience and knowing the reasons for failed decans.

Good luck.

[Kaylie]

I totally agree with what everyone has said so far. they schedule the many test so that they can make sure that they have covered everything from head to toe, anything that could possibly interfeer with them making a decan possible.although we have never saw Dr Cotton, we have been in contact with them in the past and our first talk with them was giving the extensive medical information so that they could set all the testing base on what info we gave them, and also if they needed more information. they also gave us info on a Doc in our area that had trained with Dr Cotton, if we could not get there. I too would let them get the necessary testing done so that they can come too best protocol possible for your Son, best of luck.

[Ainsley's Mom]

Another thought that I had which may make you feel better is that they are very concerned about acid from reflux getting onto the surgery sight in the airway so they may just need to rule it out for themselves to know that he will have the best chance at recovery post-surgery. It may be that with your son's failed surgery they want to make sure that he isn't silently refluxing. Maybe you've got enough ideas from us about why they might want to do the biopsies that you feel more comfortable? If not I would think the nurse would be happy to explain to you why they feel the tests are necessary so you feel better about it. Don't worry, you're in good hands over there.

[faywrayy]

I want to echo what Susan just said. My daughter was not treated by Dr. Cotton, but had a GI workup leading up to her LTP. She had been diagnosed with reflux at 2 mos old and been on meds since then. Going into the LTP, her ENT requested a ph probe on her meds (to make sure they were still working in the proper dosages), and an endoscopy with biopsies to make sure there was no damage due to reflux. He wanted to make sure the surgical site would be protected completely from any acid or stomach contents as it healed. If he'd found her reflux wasn't in control with the meds, they'd have upped the dosages for that period.

[georgana]

Thanks everybody for the feedback. It has brought me great comfort.
I am always gun-shy at first when it comes to more invasive testing and procedures. I think my son (being and ex-micro preemie) has had about 20 surgeries total so far in his short life of 27 months so I am always sad to have to put him through more. I guess we will have him go through all the testing. He has never choked or thrown up. He eats everything just fine and has never been diagnosed with reflux before. But who knows...maybe there are some micro aspirations that we don't know about. He has unxplained edema in the subglottic area still and has failed capping trials although he wears a speaking valve all day long without any trouble. If it weren't for this stupid edema, he would have gotten the trach out last summer already which has been so frustrating. Considering the only reason he got trached in the first place was because of BPD and not being able to come off the vent. Now, he has been off the vent for about a year and a half and has not needed a lick of oxygen in over a year. So, you can imagine my total frustration. Like all of you, I view the trach as a prison albeit a very necessary prison that is keeping my son alive.

All the best to everybody and supportive hugs all around,
Georgana ( mom of Arturo... ex 24 weeker now 27 weeks old)

[Ainsley's Mom]

Originally Posted by georgana

..... He has unxplained edema in the subglottic area still and has failed capping trials although he wears a speaking valve all day long without any trouble. If it weren't for this stupid edema, he would have gotten the trach out last summer already which has been so frustrating. ..... ( mom of Arturo... ex 24 weeker now 27 weeks old)

Unexplained edema could totally be from reflux. Which can come up and into the airway without it actually coming out. My daughter had vomiting but I was convinced she didn't have acid reflux or reflux. She'd had pH-probes that were negative, had been on acid blockers, positioning wedges and none of it helped. She never showed any discomfort like you'd expect. So I really didn't think it was reflux. She did cough a lot and then would vomit so I knew that was a problem but it was triggered by coughing up trach secretions. I should also mention that there was a 4 month time period when she was not vomiting and still she had the airway swelling. When we went to Cincinnati they did an impedance probe test and found there were 130+ episodes of reflux during the 12 hour period. Only once did she actually gag and spit up during that period. Eventually we had a fundoplication done and the swelling reduced. It turned out she really was refluxing stomach content when she coughed and it was contributing to swelling. I'm not saying that's what's going on with your son, but wanted to share our story to give you another point of view. Good luck, hope Dr. Cotton is able to help your son.

[ColinP]

I understand your concerns. We too sought out Dr. Cotton's opinion. All of the Dr.'s we saw were under the wait and see approach. Colin had severe edema in the subglottic area. He too tested negative for reflux. When Dr. Putnum and Dr. Cotton got together to evaluate Colin's airway Nov. 2007, he was diagnosed with eosinaphilic esophogitis. We went back a month later after starting treatment. The edema was gone and were able to schedule Colin's Single Stage LTP for March 2008. He now has been trach free for over a year. We are still on medication for the E.E. and reflux medication as a preventative. No other Dr. diagnosed or even suggested that this was the reason for the edema. And with all of our moves we have had GI and ENT in Pittsburgh, Virginia and Dallas. I suggest you go and trust that they are doing what is best for your child. Colin is proof that all Dr. Cotton's tests are ran for a reason.