Why does the flurry of doctor appointments always seem to come over the winter months?
On Monday, we went to see Nolan's ENT to discuss his sinus CT results. We had been given a heads-up that the CT results showed sinusitis, so that wasn't really a surprise. His sphenoid and maxillary sinuses show evidence of chronic sinusitis, a result of the ever-present acid reflux that inflames the area. The mucus can't drain, so it becomes infected. Since the sinusitis is caused by the reflux, we can't really treat the sinus disease until we get the reflux under control.
We also discussed Nolan's ridiculous ear infections. We now know why the antibiotic drops can't cure the infections. The child has stomach acid coming out of his ears - there is no amount of antibiotic therapy that is going to work in that scenario. You can clear the resulting infection, but the inflammation and drainage are going to remain.
Of course, this means that our attempts to treat the symptoms of Nolan's acid reflux are failing. We can treat the apnea with a C-Pap. That is, when Nolan can tolerate the C-Pap mask and isn't too nauseated at night. We have removed his tonsils and adenoids, trimmed his lingual tonsils, had his larynx trimmed and his epiglottis tacked up. We have had four sets of ear tubes inserted, and supplement his diet so that he can maintain his weight, even when he won't eat. We have him on adult dosages of two different anti-reflux drugs. And none of it is really working.
And then there is the nausea and stomach pain. We have a four year old child who begs us for more medication. Who asks for a bowl to hold onto at bedtime. Who says, "I feel sick" several times each day. Who gags and coughs from reflux on a regular basis.
With his lungs, airway, ears, sinuses, and nutrition affected, avoiding a fundoplication is no longer feasible. He has been referred to Strong Memorial Hospital in Rochester for a Nissen Fundoplication evaluation. We don't have any appointments yet, so I have no idea when the ball will get rolling. I don't know what the evaluation process involves, or what the overall success rates are for a child with Nolan's particular form of acid reflux.
We do have a bazillion questions for the surgeon, and I am busy formulating a list.
On the plus side, the ENT did call over the audiogram from his hearing test on Friday, and his hearing is definitely stable. We'll take all the good news we can get around here!
9 comments:
My heart is aching already reading out your post. the poor guy , how he suffers. I had the same problems Leah and believe you me Homeopathy treated me of my acid reflux completely.My tonsils were always inflamed and i really suffered for years and the doctor was going to remove them when I stopped and started homeopathic treatment. Now I lead a good life and can eat everything. please consult a homeopathic doctor once.
SO GLAD his hearing is stable - one piece of good news to hang onto.
And I'm trying (hard) to see the bright side. Not easy, when I think of things like "stomach acid coming out his ears" and it's meant literally. :0(
But... well... he's got two FABULOUS parents, and access to the best health-care system in the world. And what help is there for him, he will have.
Praying for his comfort,
Julie
Hang in there honey. I know you don't take this decision lightly. You do the best for Nolan that you can and your decision will reflect that. We'll keep you in our prayers!
Leah, I'm sooooo sorry this is where you are at this point. Poor sweet kid. This fundo-thingy had *better* work, or so help me I'll come down there myself and make it work. Sigh. I guess that's not exactly realistic.
[BTW, I originally wrote that with a good scattering of expletives, but this is is a family blog, so I cleaned it up. But that's the level of frustration here.]
Anyway, I'm sorry you're having to go through with this, and I'll be anxiously awaiting word on every development. Thinking of you....
Thoughts and prayers your way!
Have you thought about doing a g-button at the same time? I can't tell you how much pressure it took off of us to get KayTar's. We initially got it for supplemental purposes and to keep her afloat when she was sick and would make herself NPO, but once we got it, we realized how badly she had needed it all along.
I really, really hope that the fundo can turn things around for him! We haven't had to take that step yet, but honestly in Nolan's situation it seems like the only course of action you are left with and the benefits could be HUGE for him!
Kyla, we're not sure how the fundo surgery will work. I guess some surgeons always place g-buttons and some only do it if the child is FTT. Nolan is currently in the 14th percentile - it is a struggle to keep him there, but the g-button would be more for venting than nutrition (if they placed one). We'll have to see what this surgeon does.
And, of course, yesterday he was doing really great (reflux-wise), and when he looks so good it is hard to contemplate doing the surgery. But we are counting the good "days" in 24 hour stretches now, sandwiched between many days of gagging/coughing/nausea.
I've been meaning to ask - have you tried meds to increase Nolan's gastric emptying speed? or his intestines in general? Maybe speeding things up will help things go down instead of up? I don't envy you this decision...
That will be part of the fundoplication evaluation - though Reglan has its own set of concerns (black box warning on that med)... if it would even help.
We do know Nolan has some motility issues, but they aren't very severe. His gastric emptying time showed 27% empty after an hour, which is "borderline" in our neck of the woods (in other areas, that is clear-cut gastroparesis, and in some areas it would be considered the low end of "normal"). Gastric emptying scans have no defined criteria across the board - very frustrating! And Nolan's last one was done over two years ago, so I'm sure he'll be going in for another one.
If his motility is too poor to accept a fundo (we're more worried about esophageal motility) then we'll have to look at other options. But his motility isn't bad enough to account for the terribleness of his reflux... tests regarding motility are done as a work-up prior to fundoplication, though. That is our biggest remaining concern (along with WHY this child has such issues in the first place, of course)!
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