Her only advocate...

Pre lumbar puncture

Post lumbar puncture...and a few sedatives.

The appointment yesterday went something like this:

Doc comes in, takes stack of MRI films and says he'll be back.

After viewing films he comes back in and says

there's been no change.

Really??

Let's have a look at those together Doc.

He only puts up three films...see, no change.

Huh??

There's another one I'm a little concerned about Doc.

searching searching searching

Says he knows which one I'm talking about.

Aha!

Doc points out two more lesions,

one I didn't even notice.

Says because of the poor image quality he can't

call those lesions but he can't rule them out.

(note: while some images were bad, this one

not so much. end note)

We go back into room.

Doc says he wants another MRI in 2 months.

That's it?

That's it.

Doc, did you expect any change on this MRI?

No.

Then why was it ordered?

To see if there was any worsening.

And the possibly new lesions at the back of the brain?

The ones your not sure about?

No comment out of Doc.

Doc, what would you have done if there had been worsening?

I'd order an immediate lumbar puncture and blood work.

Ahhh.

Doc, I've been talking to a doctor at Boston Children's Hospital.

He's set up an entire team of doctors to help

distinguish ADEM (docs diagnosis) from Pediatric MS.

(which is hard to tell from MRI)

I overnighted the images from the last MRI to him.

He gave me a number that you can reach him at,

says if you say who you are they'll put you right

through to him. He'd really like to speak to you.

I've left three messages for you to this effect.

Did you get them?

I did. I'm not calling him.

Says he's sure of his diagnosis, why does he need

to consult another doctor who's probably just out of Med school.

Umm...because you have a worried mother who

thinks two heads are better than one.

(I said this to him)

Then he goes on to say this doctor is beneath him.

Says this doctor would study under him if he was here.

Yeah great.

Then he gives Chocolate Chip a 2 part exam:

1. Open and close your eyes little one.

2. Hop on one foot little one.

(she does both, the 2nd unsteadily, but she's young)

Doc says, "See, she's fine."

Easy Mr. Thorough

As of yesterday, there had been 25 days in June.

Chocolate Chip complained of headache

multiple times a day for 20 of them.

Stomach ache, 10 of them.

(per my calendar I'm keeping)

Would he put up with that?

I ask how one would diagnose numbness in children.

They'll tell you.

I don't think so. I think children tolerate a lot.

( I said this to him)

He agrees.

I tell him about one instance where I watched

Chocolate Chip, who's clumsy by nature, drop the same cup

(spilling it's contents on the floor) 3 times in one day.

Now, is that cause she's clumsy

or is it numbness in her hands.

Doc, now suggests blood work and lumbar puncture...

if WE want.

I ask him to give us a minute alone so we can pow wow.

We decide to do the spinal tap and blood work.

We open the door, he comes back in and

before we can say anything...

He insists on the lumbar puncture.

He insists on the blood work.

Then...

after we have all these results he'll call the Boston

doctor, "as a favor to you, to put your mind at ease."

Gee thanks.

The initial findings on the spinal fluid

(all four vials of it)

are that there's no infection.

This is good and bad.

Good because she's not sick.

Bad because if those are new lesions on the

back of her brain, they weren't caused by

an infection.

ADEM is a brief but intense attack on the brain

and sometimes spinal cord...caused by a virus.

In all of this, I hope that this doctor,

regardless of how I feel about him, is right.

I just want to make sure he doesn't assume anything.

I won't sit idly by and trust.