Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Monday, March 1, 2010
Neurology Appointment: Unanswered Questions
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?
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.