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Thursday, September 6, 2012

Lee's Mysterious Head Pain

It's been a while since I've posted anything about some of the medical challenges Lee faces.

He had seizures before he was born. Toward the end of my pregnancy, there were times when the slow, rolling movement of a baby growing too big for his Mama's tummy were interrupted by rapid periods of shaking. It felt like Bambi's friend Thumper was in there, thumpin'. I told my doctor, but it never happened when I was hooked up to a monitor.

He had his first recorded seizure in the presence of the RN assigned to us during his second night after being born. We were due to go home the next morning. Instead, we were flown by helicopter to a bigger hospital with a NICU, where he stayed for 6 days.  Nothing significant was found to cause the seizure.

He didn't have another seizure until he was 5.  He was sitting up in bed watching Phineas and Ferb, and then suddenly grabbed the side of his head and started crying.  Then he fell unconscious.  When he came to, he was clammy, his pulse was rapid, he was dazed, and very disoriented.  He was taken by ambulance to the ER.

For about 4 hours he was emotionally flat, still, and lethargic.  Sleepy.

The hospital ordered an MRI and CT Scan.  They discovered that Lee has a Chiari Malformation.  His Neurologist explained that we would need to limit his activity from anything that might jar his neck.  Roller coaster rides.  Flips on the trampoline.  This has brought no small amount of angst to Hugo and me.  Lee is a typical 7 year-old boy.  Active.

I have written about all of this before.

The Chiari Malformation, and the seizure activity are completely separate, according to most of the Neurologists Lee has seen.  But, the pain he has had in his head has been explained as being caused by the Chiari, and some of the painful episodes have brought on seizure activity.  So, though they're not related, they do play against each other.  They're both affecting his brain.

Last winter, Lee had a new barrage of tests, and the results came back saying that no Chiari Malformation was seen.  You don't grow out of these.  So either Test #1 was wrong, or Test #2 was wrong.  So, I asked for a Test #3.  The Neurologist didn't want to do it.  So we switched Neurologists.

Now, this is where is gets, well, we'll call it funny.  Please note that I'm not in a good mood right now, so I'm not laughing.  But, on a different day, I can see that there might be some humor here.

Lee's last name happens to be a popular girls' first name, and the name "Lee," is more commonly a last name.  The result is that he is always mistaken as being a girl with the last name Lee.

I always.  Always.  Have to correct this.

We have an HMO.  We're assigned the doctors we see by the insurance company.  When I requested a switch of doctors, some clerk saw Lee's name and since they naturally assumed his last name was Lee, they further assumed he is Asian, and is an immigrant from another country.

We walked into the new Neurologist's office, and were the only Caucasians in the building.  Their sign-in forms weren't even in English.

Dr. Kim entered the room, took one look at us, and you could see the look of surprise.  He does speak English, kind of, but we have to use our hands a lot, and I have to speak slowly.  Very slowly.  And I have to repeat myself a lot.  A lot.  And I have to ask him to repeat himself.  He doesn't hesitate to show his frustration.

So, we pushed forward, and I explained my concerns.  That there was a Chiari Malformation.  With lots of physical restrictions.  Then, there wasn't a Chiari Malformation.  And as badly as we want Test #2 to be the correct test, we can't be sure that it is.  What if it is the wrong one?  What if we lift all of Lee's restrictions, only to discover tragically that we shouldn't have?

So, he told me that Lee needs to go to a specialist.  Ummm.  But, isn't a Neurologist a specialist?  He said he'd rather a Neurosurgeon look at the case and decide whether another CT Scan or MRI needs to be ordered.  That he didn't feel qualified.  Oh.  OK.

My faith in modern medicine lies somewhere between total awe at all that we have accomplished and can do, and a belief that far too many doctors are kin to the Banana Brothers Outfit.  That day, I was leaning toward the Banana Brothers theory.

Lee has been quiet.  No seizure activity, no strange pain episodes, and nothing abnormal at all for months.

Last night at 11:30 he woke up crying.  His teeth hurt.

His last dentist visit was about 4 months ago.  No cavities.  I looked inside his mouth.  No redness in the gums, no visible problems with his tooth.  I gave him Motrin and put Anbesol on his tooth.  A half hour later, he awoke again.  And again a half hour after that.  I brought him to my room to sleep the rest of the night.  He woke up whimpering, or crying every 30-40 minutes.

At around 4:15, he woke up again, crying a little more.  I got up and held him.  He was in intense pain, and there was nothing I could do to make it better.  I needed to go to the bathroom excuse myself, and while I stepped away, he grabbed his head, crying even harder, saying his head hurt.  I looked at Hugo and we decided he needed to go to the ER.

As I dressed, Hugo helped Lee get dressed, and Lee noticed that I had laid out soft basketball shorts, and a home t-shirt.  He said, "These aren't the clothes I'm supposed to wear."  It encouraged me that he caught that.  We told him that we wanted him to wear comfortable clothes.

Unfortunately, our local ER doctor also belongs to the Banana Brother Family.  He did what so many ER doctors do.  He processed the patient through.  I decided that at this point in my life, I need to just realize that the ER doctor isn't there to diagnose, or really treat a condition.   They're there to assess whether there is an emergency that needs emergency attention.  In this case, all Lee needed was pain medication, and a recommendation to follow up with his own doctor.

The doctor did see a pink left ear, but without a fever, was reluctant to prescribe an antibiotic.  I'm fine with that, actually.

The moral of this story here is that Mom can't take any time off.  I was tired from pushing for answers on Lee's condition, and since he's been quiet for all these months, I didn't continue to push to get him in to see the Neuro-Surgeon sooner.  And as a result, when this happened today, I assumed the worst.

It's looking more and more like it's a simple ear issue.  Six hours after his pain medicine dose in the ER, the pain returned.  Tessa, Adam, and I were able to get him to describe the location of his pain.  It hurts in his upper molars.  His lower molars.  His jaw.  His cheek.  And his ear.  Since the ER doctor saw a pink ear, I'm leaning on that as being the culprit.

In the meantime, I've contacted the Neurosurgeon's office to schedule an appointment.  They don't have Lee's Authorization Approval Letter, in spite of the fact that the new Neurologist's office faxed it to them 6 weeks ago.

And the former Neurologist hasn't sent Lee's records over to the new Neurologist.  So I called.  The receptionist told me that they need a new signed release from me.  That I can't fax it to them.  Or send it to them. That I have to physically take it to them.  I challenged this.

They asked for my son's name.  I told them.  First name, Lee, and then I gave them his last name.  They said his name back to me, with his first and last names switched.  I said, "No, his first name is Lee."  She put me on hold.  A new lady got on the phone.  She said his name backwards.  I said, "No, his first name is Lee."

She asked for his date of birth.  I gave it.  She put me on hold.  Came back.  Said she found his file.  And then asked for the fax number.  They're faxing it to the new Neurologist.  Without my signed release.  Whatevs.  If it gets the job done, right?  I can only hope that the doctor's assessment of me as being "INTENSE," was written on his chart, and that was what made them decide to get both Lee, and his intense Mom, the heck out of there.  Give us over to the new guy.

I'm remembering now why I needed a break from all of this.

But, then I see my little one in pain, and I remember why it is that a Mom's job is never done.  That there is never any clocking out, so to speak.  It's time to get busy.  And unleash my intensity on a new batch of medical professionals.

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