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).

A Brief Panic Attack

Scheduling MRI's is especially problematic in our area. For one thing, our insurance company is rather reticent to authorize imaging studies (our last MRI took several months to authorize, and then the insurance company authorized it for the wrong hospital). For another, Buffalo Children's only offers sedated MRI's one day per month. They are the only location to offer sedated MRI's for children within a 200 mile radius, so you can imagine their schedule tends to get rather backed up.

I was immensely pleased when our ENT's office called to say that Nolan's MRI was scheduled for March 23, at 11:00am. This is incredibly fast for our area, and it was a huge relief to get a slot prior to his scheduled tonsillectomy. The ENT's office called again on Friday to state that our insurance company had given pre-authorization. Cool.

I breathed a sigh of relief with the knowledge that everything was set in motion for figuring out this whole "Nolan quits breathing at night" thing. Then, late Monday afternoon, the phone rang.

"This is Buffalo Children's MRI department, calling to schedule Nolan's MRI. Our earliest available date is at the end of April."

Whaaaaa???

I am normally a rational person, but my panic alarm was immediately triggered.

"He's already scheduled for an MRI, on March 23 at 11:00."

This is when things started to get a bit ugly. The MRI scheduling person got her knickers in a twist, and told me that he is not on their schedule. She said the ENT's office should not have called us and given us a date, that they don't even sedate on that day. Also, we should snag the date late in April, before we ended up waiting until the end of May.

My heart started racing. We can't wait until late May. Not with a scheduled tonsillectomy/adenoidectomy on a child with severe central sleep apnea of unknown origin. So I simply told the MRI lady,

"No."

To which she responded,

"What?"

I don't think anyone ever told her "no" before. I'm getting well versed in the use of the word.

"My son has severe central sleep apnea. He stops breathing and turns blue at night, and we have an operation scheduled for April 13. The MRI has to be done prior to that surgery and as soon as possible."

"He's not on our schedule. You're at risk for losing this spot in late April."

I told her to check with our ENT's office, and to call me back the following business day. Then, heart pounding, I called our ENT's office. It was not a normal business day for them, so I left a rather frantic voice mail. Then I spent an incredibly long night worrying about the entire chain of events should the MRI fall through (cancelled tonsillectomy, delayed follow-up sleep study, etc).

Our wonderful ENT medical office called me back the following morning, before the office even opened. The MRI is scheduled for March 23, they assured me, and the paperwork hadn't been given to the sedating nurse yet. Buffalo Children's called shortly thereafter to state that he was on the schedule for the 23rd. I am so, so glad I did not cave to the pressure of Ms. MRI scheduler and take the appointment in late April.

So the MRI is set for March 23, we should show up at 9:00am, and they will perform the MRI. I hope.

Keepin' It Real: Paging Dr. Diaper Genie

On the way home from Buffalo one evening, Matt asked why Nolan had to see so many doctors. He noted, correctly, that Nolan isn't "sick." I explained that some doctors do help you when you are sick, but other doctors help your body work better.

I told him that Nolan sees a doctor to help him hear better, a doctor to help him eat better, and a doctor to help him sleep better. Matt nodded and sat, thinking about this for a few minutes. I thought the conversation was over, but then his voice piped up from the backseat,

"Well, when are we going to get a doctor to help him smell better?"

Perhaps it's time to start toilet training...

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.

ENT Update: In Which Spring Looks Very Busy

Nolan in front of our local ice castle

We headed up to the ENT yesterday to discuss Nolan's recent hearing loss, the obstructive apnea, the central apnea, and to inform her of his "staring spells," which may or may not be seizure activity. The appointment was at 3:30pm, but the ENT's office is frequently overburdened and we didn't get in to see the doctor until 5:00pm.

The general plan is:

Central Apnea:

The ENT will not treat or handle this, as it is a neurological issue. We already have a neurology appointment lined up for March 1, so the central apnea will be discussed there. In the interest of "getting the ball rolling," the ENT did order an MRI to be completed as soon as possible. Preferably before April 13, for reasons outlined in the obstructive apnea discussion.

She did reassure us that Nolan's arousal mechanism is working just fine, so he is not in any danger for the time being- as long as we don't give him any sedatives.

The ENT doesn't really know about the possibility of Arnold-Chiari (not her area of expertise), but an MRI will show if one has formed or if there is something more sinister going on. Hopefully, it will show absolutely nothing. Idiopathic central apnea sometimes resolves on its own, so we're definitely hoping for idiopathic here. Our insurance company is known for being particularly terrible about approving imaging studies, and Buffalo Children's has only 1 day per month for sedated MRI's, so getting the MRI done before April 13 seems dicey.

We will also be scheduling another sleep study, probably for sometime in May, to check on the status of his obstructive and central apneas (hopefully the obstructive will be completely resolved by then).

Obstructive Sleep Apnea:

Nolan's tonsils are not enlarged, but due to the findings of the sleep study and the chronic fluid-in-the-ears issue, the ENT wants to do a tonsillectomy, adenoidectomy, and place bilateral PE tubes again. She'll be placing Reuter-Bobbin tubes this time, as they have wider flanges and should be retained in his eardrums a little longer. The surgery is scheduled for April 13, and the ENT would like to have his MRI completed prior to the surgery.

Because Nolan has central apnea, things get a little complicated with the anesthesia. He will be placed in the pediatric ICU following his surgery, and be monitored there for 24 hours to ensure he doesn't stop breathing due to the anesthetic. He will be discharged with a prescription of tylenol with codeine for pain management, and we will have to ask the neurologist about the safety of the codeine with his central apnea. We do not currently have a pulse-ox meter with an alarm to monitor Nolan at night, though that may change after our consultation with the neurologist.

A follow-up sleep study will be scheduled about a month after surgery to verify the obstructive portion of Nolan's apnea has been resolved.

Ears:

Background: Nolan lost about 30dB in his high frequencies (his left ear went from a 50dB rising to 30dB loss to a flat 60dB loss). He does not have fluid in that ear, but did have a small perforation. His right ear had some negative pressure at the time of testing.

The ENT looked in Nolan's ears and noted the left ear looked fine, but the right ear is full of fluid. The current plan is to place bilateral PE tubes and repeat the hearing test. If the conductive component is still there, then we'll call it a permanent mixed loss and increase the amplification on his hearing aids.

The only negative is that the PE tubes won't be placed until April 13, so we will have to postpone his next booth test. He'll be under-amplified for a bit longer, which isn't ideal. In the scheme of things, however, breathing is more important than hearing. The neurology and MRI workup will take precedent over the hearing issues for the time being.

Staring Spells:

Again, this isn't under the ENT's jurisdiction, but we did inform her that Nolan has been having "staring spells" and had an EEG performed last Wednesday. The results are not in from the EEG yet, so she wrote the possible seizure activity into her notes. Once we find out if there are (or are not) seizures, we can more accurately document that in his file.

So, to recapitulate, our spring is going to be extremely busy. The schedule (as it now stands) is:

March 1: Neurology consultation
March/April TBD: sedated MRI
April 13: Tonsillectomy, adenoidectomy, and bilateral PE tubes set #3
May TBD: Follow-up sleep study
May 24: Follow-up ENT appointment

Questions for the ENT

With so many recent findings (new, conductive component to Nolan's hearing loss, obstructive sleep apnea, central sleep apnea, staring spells), I have been creating a list of questions for our ENT. I don't want to miss any information or get sidetracked, and I find that writing questions down before an appointment helps keep my mind focused during the all-too-short 30 minute appointment.

The current questions are:

Additional Hearing Loss:

1. Could a microscopic perforation really cause 30dB of hearing loss?
2. Has the perforation healed?
3. How can we determine ear-specific bone conduction levels, since the current testing only represents the "better ear?"
4. If the perforation hasn't healed, will we need to intervene in any way?
5. If a conductive component remains after resolving the perforation or any potential fluid, will we need to adjust Nolan's hearing aids? Will we need to investigate the cause of the mixed loss further (i.e. middle ear exploration)?
6. Should we place a third set of PE tubes if we're going to do a tonsillectomy/adenoidectomy?
   

Obstructive Sleep Apnea:

1. Are three apneic events enough to recommend a tonsillectomy and adenoidectomy?
2. If a tonsillectomy is recommended, will the required pain medication cause a problem with Nolan's central apnea?*
3. Will Nolan be kept in the hospital overnight if he has a tonsillectomy/adenoidectomy? This is a concern because of his low weight and the lack of pediatric facilities in our local area.
   
4. What are the risks of general anesthesia for the tonsillectomy, considering the central apnea?

Central Sleep Apnea:

1. What are the treatment options for a young child with central sleep apnea?
2. Should he have an apnea monitor or a pulse-ox monitor at home?
   
3. Is Arnold-Chiari a possibility, since we had a normal CT scan and a normal MRI?
4. What questions should we ask the neurologist about this condition?
5. What other professionals should be involved in Nolan's care?
6. What are the risks and long-term effects of central apnea?
7. Is this a permanent problem, or will Nolan outgrow it?

Staring Spells:

1. By the way, he's also been having staring spells and we had an EEG performed recently. We do not have the results of this test yet, but there is the suspicion of absence seizures.
   

The last one isn't really a question, but I want to remember to let her know about the "other" neurological issue we've been noticing recently. If anyone has any other questions, I'd be grateful for suggestions. I want to make sure we have all our bases covered, and have a good plan of action after this next appointment!


*We've been told that Nolan should not have any sedatives in any form-they could interrupt his "arousal process" with the central apnea. If a person with central apnea takes a sedative, they may not be able to wake up to start breathing again.

Head Bump and Speech Sample

Poor Nolan fell after preschool the other day, and has quite the bruise and goose-egg from the fall. I was worried about a concussion, but other than a large bump on his head, he is fine. The poor kid can't seem to get a break this week!

He loves his "Spider" book (Eric Carle's "The Very Busy Spider") so I took a speech sample recording while he was looking at this book.

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.

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.