Fundoplication vs. C-Pap
We discussed putting off the fundoplication indefinitely, though I realize we may have to revisit the issue again in the future. Our ENT feels that Nolan's "awful August" was directly caused by the C-Pap - he started C-Pap therapy in August and became very, very ill with retching, choking, and exacerbated reflux symptoms. Apparently, they've seen this reaction in the other kiddos with severe acid reflux. On the other hand, Nolan is doing extremely well this month, and seems to be tolerating the full-face mask much better than the nasal masks. Either he has adjusted or we're just having a great month. Time will tell, but I have every finger and toe crossed that the full-face mask is simply negating some of the issues of the nasal mask (the nasal mask forced air directly into his nose, whereas the full-face mask simply pressurizes the air around his entire face).
Balance Issues
Nolan was quite wibbly-wobbly in the office and fell a couple of times. We've seen this at home a lot, but it is the first time he's done it in a doctor's office. We've been attributing it to his sometimes wonky gait or to his amblyopia (both of which can cause "clumsiness"), but she thinks he has something vestibular going on. It would make sense since he has had a progressive hearing loss, but we'll see. She wants to do some sort of test in a spinning chair, but I don't really see the point. If it is vestibular, it isn't like we can do anything about it. She does want him to avoid contact sports that might result in a blow to the head because of the balance and hearing issues - which is strange, because he doesn't have enlarged vestibular aqueducts (these are the precautions usually given to kids with that "issue" who still have residual hearing). I'm letting it go - he's a little clumsy now and then, but it isn't the end of the world (and it isn't really a "fixable" thing, anyway).
Sinus Issues
His sinuses are horrible, of course, but they have been horrible for the past three years. With his form of acid reflux, the acid shoots past the esophagus and hits the nasal passages and airways. She ordered a CT scan of his sinus cavities to see how much damage has been done: cue episode 547 of "Reflux Sucks." Since he is a C-Pap user, he may require intervention with his sinus cavities, since they are chronically infected and he can no longer breathe through his nose. Another thing that I'm not too worried about, but we'll see what the CT scan shows.
The Dreaded Earwax
He had wax in his left ear, so we had to take a walk to the procedure room and use the Papoose Board of Doom. Since he has long-term tubes in his ears, we can't use DeBrox or any of the other over-the-counter wax removal products. We're stuck with the ENT's metal earwax removal device, which Nolan loathes. Actually, loathes might be too kind of a word. He completely flipped out once we went into the procedure room - he remembers this room and hates it with an unparalleled passion. I can't say as I blame the kid.
A Reward for a Difficult Day at the Doctor's Office
After the wax removal, Nolan's ear hurt too much to put the hearing aid back in place. He was rather unhappy with all of us, so I tried to cheer him up with a trip to McDonald's. We don't go very often, but I looked up a McDonald's with a great indoor playground, which happens to be right next to the ENT's office. They had eating booths that looked like trains and a massive indoor playground. Nolan was happy by the time we left (thank goodness).
We will have the CT scan performed (outpatient, no sedation required) and return in early November to discuss the results with the ENT.
At least October is nearly doctor free!
7 comments:
Wow. That's quite a pile for you wade through every visit. Glad McDee's can fix it - even if it's just a little. Q: re the wax issue. Lauren has horrible build up too. What's this board of doom you speak of? Lauren sits in my lap and I hold her head while the ENT scoops or vacuums. We go every 6 weeks to keep it under control. He's now suggested we drip hydrogen peroxide in to push the wax out. We've done it once and it seemed to work so we'll try to remember once a week. I suppose that might not be an option for you with the tubes and all...?
We can't use hydrogen peroxide or any of the easier methods, unfortunately. Nolan's earmolds shove the wax very far into his ear canal, up into his tubes and smashed up against his eardrums. The ENT has to use a microscope and a very long, pointy tool to get the wax out. It is actually painful, and Nolan cries of pain for a long time afterwards (he won't let us put his hearing aid back in for an hour or so).
Because of the risk of poking him through the eardrum, they strap his body down and a nurse holds his head. If he were more cooperative, he could simply lay on the table while they did it.
He's not the cooperative type, unfortunately - and he's had a lot of "trauma" in that room (scopes for laryngomalacia, pH probe placements, painful ear infection treatments where they debrided his ear canal... he is like an ENT nightmare. I end up crying on the way home from every appointment. They are so traumatic and painful and those issues just don't seem to let up.
Got it. Thanks for sharing more. Sorry things get so tough for both of you. Hugs from us!!
Ouch, that really hurts! To think of how he has ear wax removed is painful.Prisha sits absolutely still and its horrid enough to see that.This sounds terrible and he is really a brave lil soul !
Whoa! Our ENT doesn't deal with any of that stuff for us. They have strictly been hearing loss/tonsillectomy! Our visits have been pretty simple..."Still deaf?" "Yup." "Bye!" ;)
Glad McD's could cheer him up. We're all about bribery at our house!
Kyla, Nolan's hearing loss has been progressive (and it's in both ears), and he has long term tubes that get clogged with wax. It has to be removed under a microscope, so the only one who can do it is an ENT. And the sinus issues are always handled by ENT's, along with vestibular issues.... Nolan just happens to be a kid where every single issue is ENT related. The laryngomalacia is handled by ENT (they're the only docs that do supraglottoplasties) and the reflux was handled by a GI until we determined he had LPR reflux - and LPR is handled by ENT's. Nolan is literally an ENT's dream (or nightmare) come true! His ear infections are so severe and chronic that it often takes 4-5 meds, cultures, and debriding of the ear canal to cure them.
The sleep neuro handles the C-Pap and the urologist handles the urology issues. Other than that, we're mostly ENT! We almost never see the pediatrician - when he's sick, we handle it at home and when he's really sick, it usually involves (guess what) an ENT issue - so we end up there.
I have to say, our ENT is what our pediatrician SHOULD be - she is the closest to a "comprehensive" care person we have - she doesn't handle things outside of her field (like his vision), but 90% of his problems fall under the guise of ENT.
It's nice you can get such a comprehensive check at his ENT. Re: balance, as you know Aiden has huge balance issues. We're trying to get them under more control during his OT, but even she said with some kids, it's just something they need to learn to adjust to, and only time will tell. We're thinking of going to a neurologist just to make sure nothing else is going on, but are in no hurry to make that appt. Aiden's OT does "spin" activities with him on an orbit board, but he can only tolerate 1/4 of what the "typical" child can. It's funny though, it's not that he gets dizzy, it's more that he loses control of other senses he typically has control of, like his vision (I say who wouldn't though!), and therefore has trouble self regulating.
yay for a lax month of appointments in Oct. and so glad that McD's put a smile on his face again. For Aiden, it's ice cream!
Post a Comment