Sleep Study Part II: The Curve Ball

I keep trying to collect my thoughts on this, but I don't think that is going to happen any time soon. Please bear with any rambling, as it is the result of a very concerned and exhausted mother.

Nolan's sleep study found something else, in addition to the obstructive sleep apnea. Actually, this other finding was far more prominent and significant than the other finding.

Nolan has severe central sleep apnea. This is much more serious than obstructive sleep apnea, because it means there is a problem with Nolan's brain. When he goes to sleep, his brain forgets to tell his body to breathe. This happened sixty times during Nolan's sleep study, for a duration of more than ten seconds, and with oxygen desaturations.

For the more technically inclined, here is a list of statistics:

Lowest oxygen level during the sleep study: 79%
Number of obstructive sleep apnea events: 3
Number of central sleep apnea events: 60
Number of hypopneas: 41
Total number of respiratory events (apnea and hypopnea): 104
Sleep efficiency: 69% (poor)
Number of desaturations 3% or greater: 161
Number of desaturations/hour (non-REM sleep): 30.6/hour
Number of desaturations/hour (REM sleep): 41.6/hour

When Nolan's brain fails to tell his body to breathe, his oxygen levels drop and he wakes up, which causes him to start breathing again. Thank heaven the arousal function in his brain is not broken, because the autonomic control for breathing is broken. The official report states:

"The overall respiratory disturbance index was 19.9 (central index: 11.4, obstructive index: 8.5) with a minimum oxyhemoglobin saturation of 79% following a central apnea. Desaturations to 87%-89% were also seen several times following central apneas. Most central apneas were 10 seconds in length. Also, frequent central apneas were seen without arousals and desaturations (that were not scored) were seen. Repetitive central apneas were noted, however not with a periodic pattern. Obstructive apneas/hypopneas were also seen frequently. Mean oxyhemoglobin saturation was 96%. There was no particular worsening during supine or REM sleep. Paradoxical breathing was not noted. Carbon dioxide level was not elevated during the study. Total time of study with oxygen less than 90% was 5 minutes.

These findings indicate the presence of severe central and obstructive sleep apnea (for the pediatric age range normal RDI <1.5). Considering the prominence of central events, a neurogenic cause (i.e. Arnold-Chiari) may be considered. Also, developmental immaturity of the respiratory system may be at play, although he is clearly out of the normal age group range for this finding. If clinically indicated, evaluation by ENT for possible tonsillectomy and adenoidectomy could be considered for the obstructive portion. Clinical correlation is suggested."

Our pediatrician nixed the idea of developmental immaturity as the cause (this is primarily seen in premature babies, and sometimes in full-term infants, but not in 30 month olds). Arnold-Chiari is also very unlikely, because Nolan had a CT scan of his head as an infant and it was normal.

This is an issue on top of the staring spells we have been seeing. The sleep study EEG only uses four electrodes, and is only used to monitor REM vs. non-REM sleep. Because of this, the EEG isn't even mentioned in the report, other than to state the stage of sleep Nolan was in when respiratory events happened.

There are several issues now pointing to a neurological issue, so it is good we have a neurology appointment set up. We see our ENT on Monday to discuss the next step with this particular issue. There isn't much they can do to treat the central portion of his apnea, though supplemental oxygen at night, a biPAP machine, or medication are sometimes used. We will know more after we discuss this with his ENT.

His EEG is scheduled for tomorrow morning, so we will be keeping him up very late and waking him up very early (putting him to bed after midnight and waking him by 5:00am) in the hopes of stacking the deck for observing possible seizure activity.

At least we are getting more pieces to the puzzle, and we know why he doesn't sleep. His erratic behavior after waking from his naps and bedtime is also easier to understand- he wakes up sleep and oxygen deprived. I pray that we can find the cause of his breathing issues, and find a way to manage or solve them.

Sleep Study Results Part I: What We Expected

Matthew had his four year old well-child visit yesterday (36 pounds and healthy as a horse, in case anyone was wondering) and I asked the pediatrician if Nolan's sleep study results were in. She went to look, and came back with the report.

The sleep study report contains some findings that were expected, and some that were not expected. I'll save the new curve-ball issue for another post entirely, because it has a lot of implications and I am not sure what to make of it right now.

As for the expected findings, he does have obstructive sleep apnea. This is no big surprise, considering that we hear him snoring for most of the night:




TRANSCRIPT: Nolan is snoring.

The neurologist who wrote the sleep study report recommends a tonsillectomy and adenoidectomy to resolve the obstructive sleep apnea, so I'm pretty sure that our ENT will want to move forward with surgery. We see our ENT on Monday the 15th, so I am sure surgery will be scheduled then.

We also saw our GI doctor yesterday, and she is pleased with Nolan's progress. He weighs 25 pounds, 14 ounces (almost 26 pounds, which places him in the 10% for his age- a HUGE improvement) and is doing fairly well on his Nexium. We are continuing the DuoCal and keeping him on whole milk for the time being. We don't need to see her until November, so we are quite happy that things are going well on the tummy-front.

Which is good, because we are going to be awfully busy on the neurology front...

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.

In Which One Nurse Practitioner is Worth More Than 5 Doctors

I've always tried to avoid seeing the nurse practitioner, in favor of the M.D.'s at our local pediatric clinic. In order to get an appointment in the immediate future, I took the appointment with the nurse practitioner and hoped for the best.

Walking into the pediatrician's office was met with worried cries from Nolan.

"Don't want hurt me!"

These things break a mother's heart.

Most doctor's appointments are filled with some kind of pain for Nolan- either shots or the horrid ENT ear-cleaning appointments. I won't even mention the urology appointments. I reassured him that we were "just talking" today, and he warily consented to enter the exam room.

The nurse practitioner did weigh him (25 pounds, 12 ounces- go, Nexium!) and asked about the "staring spells" we were seeing. I described them to her, and told her we had a video. She hit the icon for Internet Explorer- turns out they do have internet access. Unfortunately, their internet doesn't work very often. After repeated "Server is Busy" messages, we gave up on that idea.

She asked about his hearing loss. I told her it was congenital and sensorineural. She asked if he had ever seen a neurologist.

"No, Never."

"Not ever?"

She was a bit incredulous that he hadn't seen one, with the GI symptoms and hearing loss of unexplained origin. She then asked if he had any other neurological symptoms.

"Just a little head-lag thing."

She watched me demonstrate. This is something that hasn't been to the top of the "priority list," because Nolan's motor development is normal and this is just one strange little quirk in the whole Nolan puzzle.

"Who found that? One of the doctors here?"

"No, I did. I showed the pediatrician and she wasn't too concerned."

Her eyes widened with surprise and the smile disappeared. This was something that definitely called for a neurology consult. There are now three neurological anomalies- the hearing loss, head lag, and staring episodes (which may or may not be absence seizures).

Nolan is on the fast track to get an appointment with a neurologist up at Buffalo Children's. She said they will probably do a sedated EEG, and she wants to get him in for a consult immediately. She will call back this afternoon or tomorrow morning with the appointment time.

One more specialist to add to the roster....

Doing the Doctor Dance

I wrote to a mom who has a child with a seizure disorder, and asked her what she thought of the video of Nolan's staring episodes. She agreed we should get him in to see a neurologist, and sooner rather than later. She explained that the first visit is just a consult, then they have to set you up for the EEG, then you have to wait for the follow-up appointment. We should really get in to see one of our other doctors to get a referral as soon as possible.

We see our GI doctor on the 8th (which, coincidentally, is also the date of Matthew's four-year-old well child visit to the pediatrician). She, however, won't have the data from the sleep study. I decided to give the ENT a try.

Our original appointment was for March 1, but I called and rescheduled. The first available appointment was February 8th, which won't work for the obvious reasons. I really need to start working on that ability to be in two places at once, but until I can do that or teleport, the 8th is out. The next available appointment is February 15th. I took it, but wasn't happy with waiting another 2 weeks to get a referral to a neurologist. I also wasn't very happy that the sleep study results still aren't in, but it has been only 10 days. The write-up takes between 10-14 days, so I suppose we can wait until the 15th to find out the results from that test.

So I took a deep breath, and called the pediatrician's office. I tend to shy away from them. They have had a general trend in being wrong about Nolan's various medical needs. As evidence:

• His hearing loss was just "fluid in the ears." Wrong.
• We were just "gilding the lily" with his "possible" urology problems. Wrong.
• He would grow out of his failure to thrive status by the age of 5. Wrong.

I called the pediatric office and made an appointment with the nurse practitioner, since getting in to see the actual pediatrician is almost impossible. I asked the office personnel if their office had access to the internet, because I had managed to get one of Nolan's staring events on video. The office lady said (and I quote), "Well, I don't know about that. I don't think we have the internet here."

We are able to get in this afternoon, so we should have the ball rolling with the referral very shortly. Even if they have to chisel that referral on a stone tablet and send it by chariot, it should be written by this afternoon.

Because We Really Don't Like to Be Bored

Our follow-up with the ENT isn't scheduled until March 1, but I have a strong feeling we will be seeing her sooner than that. Not only because of the sleep study results, which are due in another 4-5 days or so, but because we have a new concern.

We have actually had this concern for a couple of months, but kept it close to the vest amongst all of the other ENT related problems we've encountered recently. I've also kept this new problem quiet because, frankly, it is a little scary to contemplate.

We think Nolan is having seizures.

One day, we were walking in the grocery store and he dropped to the ground, then was slightly confused for a little while. Most of the time, however, he simply stops and stares. We can be walking in the mall, and he will stop walking and stand, completely motionless, for 10-20 seconds. He won't flinch if you touch him, call his name, or pull on his arm. Sometimes he will blink slowly or twitch his mouth.

I have to call our ENT to get in early, or call our pediatrician to get into their office, because we need a referral to a neurologist.

I wanted to get one of Nolan's "staring spells" on camera, so I carried our flipcam with me wherever we went. Usually, by the time I could get the camera on, Nolan would be done with his staring event. I finally managed to catch one, on the way back from preschool when he was in the car.

This is definitely a new wrinkle. I deeply hope we are not seeing seizure activity, but are simply dealing with some "zoning out" behavior. Another thing to take as it comes, I suppose.




TRANSCRIPT: I repeatedly call Nolan's name, while he is staring, then ask him if he wants to come inside once his staring episode is over. He nods yes.

The Preschool Parade

Nolan currently attends a preschool program designed specifically for two year olds and their caregiver for two hours every Thursday. While he is already in a "program," we are in the process of making decisions regarding his placement for next year, when he will attend preschool on a more regular basis (and without my presence). Registration for preschool starts on February 2nd, so this subject has been weighing rather heavily on my mind recently!

Our area is rather rural, which limits the choice of preschools. In one way, this is almost a blessing- we don't have to fret over whether to send him to an auditory-oral type program, because we simply don't have one. Our choice is between sending him to a mainstream preschool, or a preschool for children with developmental needs.

In our specific situation, the choice to mainstream was rather simple. Nolan does not require any physical therapy, occupational therapy, and has no cognitive delay. Nolan's main developmental concern is the development of normal speech and language patterns, which is best served in a class with typically-developing language models children.

Having made the decision to mainstream, we are focusing our selection process on two preschools. One is the school Nolan currently attends, and the other is the preschool Matthew currently attends. We will call them "School A" and "School B."

There is a checklist to help narrow down the qualities desired in a school for a deaf or hard-of-hearing child, and I have looked over the list and have come to a decision on Nolan's placement for next year. Anyhow, here is an overview of the two schools:

Physical Environment:

Preschool A: The children stay in one room for most of the classroom time. The children do move to a "physical activity" room for part of the day. The floor is tiled with a large circle-time rug. The room is medium-sized. There is a fish tank in the room.

Preschool B: The children circulate between four rooms in a two hour period: a craft room, a circle-time room, a "centers" room, and a physical activity room. The craft room is tiled, the rest of the rooms are carpeted. All rooms but the physical activity room are fairly small.

For informational purposes, a larger room with a high ceiling will have more distortion. A smaller room will have more noise (volume). Pick your poison.

Class Size:

Preschool A: Usually 12 children
Preschool B: 20 children (with three teachers)

Transitions:

Preschool A: The children only move from their room once during the two hour period.
Preschool B: The children move through four different rooms in a two hour period.

Number of Classes/Week:

Preschool A: 2 days per week, 2 hours per session.
Preschool B: 2 days per week with the option to add a third day. 2 hours per session.

Familiarity:

Preschool A: Nolan knows the teacher as he currently attends this school.
Preschool B: Nolan is does not know the three teachers of Matt's school.

Number of Children With Hearing Loss:

Preschool A: 0
Preschool B: 0

Classroom Amplification Systems:

Preschool A: No soundfield or FM
Preschool B: No soundfield or FM

Lighting:

Preschool A: A mix of natural lighting and artificial lighting, well lit.
Preschool B: Mostly artificial lighting, well lit.

Noise from Adjacent Spaces:

Preschool A: Preschool is completely segregated from other areas and is not exposed to any other noise.

Preschool B: Preschool occurs in the midst of a space used by other organizations and may have noise from other sources throughout the preschool period.

Behavior Management/Structure:

Preschool A: Redirection is used for behavior management, slightly less structured in feel.

Preschool B: Redirection is used, "Sad Notes" may be sent home for a child who is having difficulty maintaining classroom behavior standards. Very structured.

Both preschools have a daily schedule, educated teachers, a variety of centers, well themed and planned activities, lesson plans, and teachers with great articulation/clarity. Both preschools use a variety of methods to tell stories, include visual props (like felt boards) and have a lot of music included within the program.

Both preschools are wonderful, and it is very hard to make a decision between the two. However, because Preschool A has fewer transitions throughout the day, is familiar to Nolan, and has a smaller class size (hence: less noise), we will be choosing Preschool A for Nolan's education next year.