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.