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?

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.

Neurology Visit: Prepared

Every parent who has a child who sees any sort of a "specialist" has to come up with a system for organizing medical reports and for keeping track of appointments. I use a small year-long planner for keeping track of appointments, and I have a binder for keeping track of Nolan's medical records. It used to be labeled as the "Hearing" binder, but is now subdivided into ENT, audiology, GI, urology, radiology, and neurology.

I've moved the neurology patient history form to the front of the binder, along with the (normal) EEG results and the sleep study results. I also typed up a list of all previous labs Nolan has had run, just in case the neurologist wants to order any laboratory tests. I don't want to needlessly duplicate anything that has already been done!

I was on a parent forum, and one of the mothers there suggested something that is very simple, but also something I have never done. She said to write down your questions for the doctor (which I have done before) and to leave space for him to write in an answer. This is simple, but also wonderfully brilliant. Often, when we are actually in the doctor's office, we ask the questions on our prepared list, but the conversation runs astray and we never get to all of them. Or the doctor glosses over a question, and it comes back to worry us later.

I wrote down a few questions for the neurologist, keeping the list to six questions. I left plenty of room for him to respond, so hopefully we'll get some answers tomorrow (though I'm not getting my hopes up too high that he'll look at the comprehensive medical picture). My questions are:

1. Should we have a monitor for Nolan at night, since he has central apnea?
2. Will the Tylenol with codeine be safe for him after the tonsillectomy?
3. How can the central apnea be treated?
4. Can the staring spells be related to the central apnea?
5. Could the hearing loss, posterior urethral valves, severe GERD, and central apnea be caused by one problem?
6. Is there any testing we can do to see if these things all tie together?

I hope to have a clearer sense of direction after tomorrow (at least with regard to the apnea, which is our greatest concern at the moment).

EEG: Normal

If you watch the Olympics with your kids, be prepared for couch-ski jumps

I called the pediatrician's office to schedule an appointment for a rather persistent cold and fever. While there, I asked if the EEG results had come in- the office personnel said they were in. The most joyous words were written on that report: "Unremarkable."

Nolan's EEG is normal. Blissfully, wonderfully normal. A prayer answered. One less area of concern.

Ironically, shortly after receiving the normal EEG report, I received an email from a fellow mom of a little one with central apnea. She said her child also had "staring spells." Which were so convincing the neurologist ran a 72 hour EEG to rule out epilepsy. As it turns out, the child was simply so exhausted he was simply zoning out, in a very extreme way. The "staring spells" were a sort of baby-narcolepsy. This has me wondering if Nolan is doing the same thing- falling asleep with his eyes open for brief periods during the day.

The exam at the doctor's office revealed a rather nasty cold, which hasn't involved his lungs but has caused a double ear infection. Both ears are so full of fluid they are close to rupturing. We are starting antibiotics today, and hopefully the infection will clear up soon. Once we have our third set of PE tubes placed in April, we should have a reprieve from ear infections for a while.

On the central apnea front, the ENT's office called with the date of the sedated MRI. We are scheduled for March 23, well in advance of Nolan's scheduled tonsillectomy/adenoidectomy/PE tube surgery. Insurance has not yet approved the imaging (Doctor vs. Insurance: Round 1), but he is on the schedule.

The Young and the Restless: Sleep Deprived EEG

Nolan, at 6:00am. Exhausted.

Sleep depriving a two year old child (who exists in a sleep-deprived state to begin with) is a very exhausting and difficult activity. A rundown of the night before the EEG:

8:00pm: Matt goes to bed. Nolan is incredulous he gets to stay up. Nolan is giddy.

9:00pm: Nolan plays with trains and all of his brother's (usually forbidden) toys.

10:00pm: Nolan starts to get sleepy. Then hyper. Starts throwing toys around.

11:00pm: Absolute mayhem. Crying. Laughing. Small boy trying to hide so he can go to sleep.

11:30pm: Nolan falls asleep. Nothing will wake him. Not even tickling. He goes to bed.

5:00am: Nolan is woken up. He is decidedly unhappy. Cries. Throws sippy cup.

6:00am: Tries to crawl under desk to fall asleep. Tries to hide under a blanket to fall asleep.

7:00am: Crying. More crying. And even more crying.

7:30am: On the road, in the car. I say a prayer of thanks for portable DVD players.

9:30am: We arrive at Buffalo Children's, proud that we managed to keep him awake in the car.

We arrived early for his appointment, but the tech was ready to take us as soon as we walked into the lab. Dennis and Matt went down to get some snacks and wander around, and Nolan and I went back into the EEG room.

Nolan was not an eager participant, and yelled, "Don't want hurt me! No test!" down the hallway. The tech tried to shush him because of the "sleeping babies." Sometimes I forget that other babies can hear. Nolan, of course, didn't care, and screamed all the louder.

We laid Nolan down on the tiny pediatric exam bed, and the technician applied the EEG leads. Then she wrapped his head in gauze, and noticed he had fallen asleep. We needed him to be awake for the beginning of the test, then to fall asleep while it was recording. This meant we needed to wake him up- not an easy thing to do. Clapping, shaking, and lights wouldn't do it. The technician had to go over and pry his eyelids apart and shout at him, which caused him to start crying.

She started the test, but now Nolan was very wary and would not go back to sleep. We filled a sippy cup with apple juice, and I laid down next to him to coax him back to sleep. The technician took his history, so I gave her the laundry list: Posterior urethral valves, moderate hearing loss, severe central sleep apnea, severe GERD, and mild gastric motility issues.

Nolan fell asleep, and we let him sleep for about 20 minutes. Then we had to wake him up again, which seemed so cruel to do to an exhausted toddler. It took the eyelid-prying method to wake him again, but a lollipop calmed the crying in a hurry. She placed a strobe light over Nolan's face and we had quite the light show, with the strobe going at different frequencies.

Then we got to take all the leads off Nolan's head. The technician was absolutely wonderful and washed Nolan's hair with warm water while she was at it. Nolan had a goofy smile on his face while she was washing his hair, and she asked him, "Do you like that?" Nolan sighed and answered, "My like that." Apparently, the boy needs to visit a spa soon!

After that, we headed home and Nolan slept for about 1 hour in the car. That was the extent of his nap (when I say he doesn't sleep, I'm not kidding), but we did get him to bed by 7:30pm tonight.

The results will be sent to our pediatrician in 4-7 days.

Scheduled

Very shortly after returning from yesterday's trip to the Pediatric Clinic, I received a phone call with the times and dates for Nolan's EEG and neurology appointments. Apparently, they really did want to get him into the neurologist quickly-his EEG will be performed this coming Tuesday at Buffalo Children's.

The EEG is sleep-deprived, which means the coffee cart in the lobby had better be stocked and in full operating capacity. We have to put Nolan to bed three hours after his normal bedtime, and wake him two hours before he would normally wake. He can't have more than five hours of sleep altogether, and he cannot nap in the car. We have some experience with this fun trick, as his ABR's in the early days of his hearing loss diagnosis required sleep deprivation. Keeping a very tired toddler awake on a two hour car ride is going to be a difficult feat.

Hopefully he'll nod off to sleep after we stick all the glue and leads into his hair and get the test started. After our abysmal sleep study night, I highly doubt this will happen. Nolan can survive on surprisingly little sleep (to wit: the child doesn't nap and still wakes up for an hour or two every night).

We should have some answers very soon, though I have a feeling the technician will not be allowed to reveal the top secret results of the test to us. For some reason the medical profession likes to keep parents on the edge of their seats, waiting for results (and no, the sleep study results are still not in).

We should know whether this is behavioral or physiological by March 1, when we have our follow-up appointment with the neurologist.