We saw the neurologist today, hoping to get some answers regarding Nolan's central apnea and a general "plan of attack" for monitoring and treating the apnea. He was a great neurologist, and examined Nolan and talked at length about the staring spells and the hearing loss (mostly because he was fascinated at Nolan's verbal ability). Unfortunately, he's the "epilepsy" neurologist and not the "central apnea" neurologist. While he was full of insight on the staring spells, he couldn't help us at all with our main area of concern.
I gave him my list of questions at the beginning of the appointment, and he walked off with them. I never did get them back (so not only did I not get written answers, but I also lost my questions)! Luckily I remembered most of them.
As for the staring spells, he watched the video and does believe they are more "moments of inattention" than true seizures. This, coupled with the normal 30 minute EEG, leads us to believe that a seizure disorder is completely off the map (relief)! The only way to absolutely rule out a seizure disorder is to place Nolan in the hospital for three days and run a video EEG, pressing a button when we see a "staring spell" occur. Of course, as when you take a car to the mechanic and the strange noise stops, Nolan's staring spells have dissipated. In December, he was having 3-4 per day. Now, he is having one spell every other week. We did book the 3 day v-EEG, but may cancel it after talking to the other neurologist. We'll give it a bit of time, however, to make sure the spells are really disappearing for good and are not just on hiatus.
As for the central apnea, he is not well versed in this. He did tell us that Nolan's first MRI was really more focused on the inner ear, so that a Chiari malformation is still a possibility. He told us we would have to see the other neurologist, the one who takes care of kids with central apnea. I will have to call the pediatrician tomorrow and get another referral- this time to the neurologist who wrote up Nolan's sleep study report. Sigh...
Here were his answers to my questions (to the best of my recollection, since he still has my neatly typed out list!):
Should we have a monitor for Nolan at night, since he has central apnea?
That sounds like a good idea.
Will the Tylenol with codeine be safe for him after the tonsillectomy?
I don't know. I don't think it will be a problem.
How can the central apnea be treated?
You'll have to see the other neurologist.
Can the staring spells be related to the central apnea?
Not directly.
Could the hearing loss, posterior urethral valves, severe GERD, and central apnea be caused by one problem?
That's not my area. Maybe you could see genetics or something?
Is there any testing we can do to see if these things all tie together?
Maybe genetics could put the puzzle together. Central apnea and hearing loss is very unusual.
He does think there are some "unusual" things that should be looked at by a geneticist, but Nolan doesn't fit the description of any known syndrome. We don't really know any more after today's visit than we did yesterday, except that we're pretty sure Nolan doesn't have a seizure disorder. And that a kid with hearing aids who walks into a room chattering away is going to amaze doctors that obviously haven't had exposure to hard-of-hearing or deaf children in the past decade.
I hope our pediatrician's office won't give me a hassle about the referral to the "apnea" neurologist, and I hope this neurologist will help us figure out what we should be doing as far as monitoring and treating the central apnea.
6 comments:
Wow. Sounds like good news about the lack of seizure disorder, but good grief... now you need another visit with the apnea doc!
It reminded me of something I've forgotten...
At Seattle Children's Hospital, once a month they have some kind of a special clinic day where they will book you appointments with several specialists all during that day. It can be a long (grueling) boring day, but worth it to see the audie, the head Oto, the geneticist, the education specialist, etc. all in one go.
I wonder if the Children's Hospital in your neck of the woods would do such a thing? Maybe your specialists are all over and it's a moot point... I'm just thinking.
Julie
I wish we had something like that! While almost all of our specialists are through Buffalo Children's, they don't all have clinics in the hospital. So we have to go to Amherst or Depew to see the ENT (two different office locations), the hospital to see the neurologist, the hearing and speech center for the audie, an office in Amherst for the GI doc, etc... (lots of running around)! It would be nice to get everything done at once!
Oh, how frustrating! It's good to hear that he *thinks* the staring spells aren't seizures, but frustrating that you can't get anything definite on that yet. It's always one step forward, two steps sideways (if not exactly backward) with Nolan and specialists. Oh, and I thought the neurology appointment was today and that you wouldn't make it to ST, hence a comment I left yesterday, but if you can join us, we'd love to see you. Because you just haven't spent enough time in the car lately.
I really wish things could get a tad easier for you. Too bad this doc couldn't get you in a bit quicker with the central apnea doc?
But, you are one step closer to more answers.
I have to update- we got in to the CSA doc (central sleep apnea doc) this Thursday. And the appointment is in DUNKIRK- only 45 minutes away! We got in pretty quickly- apparently one doesn't forget a kid with severe CSA. Hopefully this appointment will be a bit more fruitful :-)
I just read both posts and CAN'T BELIEVE you got an appt. with a neurologist so quickly! That's far out! I hope you get your much needed answers from this one.
Will you ask if they think CMV is a potential cause? I know you've thought about it before and the neurological stuff combined with hearing loss seems like it could certainly be possible. I'm so glad to hear that he is not having seizures...I'm toasting you to that right now with my merlot :-)
We saw a GI specialist who asked what was on Ethan's ears...hadn't seen a Ci before even though audiology is across the hallway. So myopic.
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