Finding the Words

It's funny how sometimes you just can't find words. No matter how hard you try.

That's been me over the past week. Maybe it's because this disease is suddenly feeling more relentless of late.

The highs, the lows-- they continue.

And the exhaustion, too.

I realize I'm not alone-- thus, even writing this has me feeling somewhat sheepish.

So I'm just gonna launch into something more specific-- and hope a decent post emerges...

Joseph's endo appointment.

While his A1c rose (from 7.4 at his last visit to 7.8)-- his growth was amazing.

"This is the biggest growth spurt we've seen in a while," his doc tells us enthusiastically.

And when Joseph stands in front of her -- sure enough -- they literally see eye-to-eye.

"You're going to pass me by your next visit," she tells him with a smile.

But then, the downside of the appointment, after Joseph and Evan retire to the lobby. When I ask a question that's been on my mind for a very long time.

"I know I've told you that Joseph never wakes up when he's low overnight-- but I've been wondering if this is something that will change when he's grown?"

His endo pauses, looking sympathetically at both me and Ryan. And then answers my question:

"Well, we've found that as children get older they actually become less sensitive to overnight lows. This is why I worry about many of my patients who are going off to college. They tell me that they always wake up when they're low. But that is really quite rare. Most people will sleep through a low blood sugar.

"I tell these kids that they have to come up with a plan."

A plan.

God.

I swallow this down. Hard.

And feel grateful that I'm not hearing it alone. That Ryan's hand is right there.

"All right, then," I say, struggling not to cry.

And then I remember something:

"Have there been any new developments on the continuous glucose monitor front?"

"A number of kids in my practice are wearing the Guardian with a lot of success. We're even finding that they don't need to change the sensor every three days.

"In fact, the device appears to be more accurate if they wear the sensor longer-- as long as two weeks."

While this sounds so very promising, I remind her that Joseph wears an Animas pump. Thus he'd have to wear the (rather bulky) Guardian receiver, in addition to his pump-- versus Minimed's all-in-one pump/Guardian combo.

"Joseph has seen the device on another child," I tell her, "and he's just not ready to wear that much equipment."

"It's still worth exploring," the doc continues, "I think that Joseph could gain a great deal of benefit from it."

Then, of course there's the money-- insurance coverage for a CGMS is still not there yet. As we leave this visit, I'm doing the math in my head and it's not coming out right.

There's just too many things: diabetes supplies, preschool for Evan, braces for Joseph...

So I'm left with a mixed bag of emotions:

Sadness and frustration over the fact that we can't get this thing RIGHT NOW for our son;

Impatience, because I desperately want this technology to improve SOON;

And hope.

Because even if we can't jump on this right now, by the time our son goes to college he'll be wearing (or implanted with) something that will take our place during those long nights.

Something that -- I have to believe -- will keep him safe.

Joseph's Meeting

"Hey bud, how'd you like to come with me to the next JDRF meeting?"

It had been several months since he'd gone to one.

"I don't know, Mom. It's not as much fun for me there as it is for you. There's hardly ever anyone my age at those meetings."

"Wait-- remember that boy I told you about? The one who got the Guardian? Well, he's gonna be there."

Pause.

"How old is he, again?" Joseph asked, giving me a sideways glance.

I smiled and said, "Ten."

"Okay. Then I'm definitely going."

"And bud, this is a good opportunity for you to find out what it's really like to wear the Guardian. So don't be shy about asking questions."

Joseph just gave me a look that said, "Since when have I ever been shy?"

It was settled.

Last night, as we entered the lobby where all the kids hang out (while the parents meet in a nearby conference room), we saw two boys with blond hair sitting opposite one another at a small table.

They were playing chess.

Joseph walked right up and looked at them for a split second, then pulled up a chair.

Immediately, I recognized the younger of the two boys as Tommy.

Before long, the three boys were joined by several girls varying in age from four to thirteen.

One had brought a soccer ball.

Throughout the remainder of my time at the meeting, I heard loud shouts coming from the lobby. I reluctantly stepped out of the conference room a couple of times to check on the kids (Joseph's voice was among the loudest-- though maybe only to me).

They were having a blast-- girls taunting boys, boys chatting it up, playing chess . . .

After the meeting, as Joseph and I walked together out to the car, he asked if Tommy and his older brother (Andy) would be there next month.

"Well, they have to drive an hour and a half to get here, so I'm not sure."

"Oh." He was very quiet for a couple of minutes.

However, once we were out on the highway, he was off to the races.

"Mom," he began with a laugh, "You know what Andy said to me? He said, 'You're a 53-year-old man trapped in the body of a 10-year-old.' Isn't that funny?"

He paused a moment, then:

"I'm taking that as a compliment. I mean, he said he couldn't believe I was in the 4th grade."

"Honey-- definitely a compliment," I said, smiling broadly.

"So Tommy kept calling me 'Jamie.' He said I looked more like a Jamie. And there's a skateboarder named Jamie, so that might be why. Anyway, I started calling him 'Bam' because he was wearing an Element t-shirt and-- you know who Bam Margera is, right? The skateboarder?"

"Yes, I do."

"Well, I wanted to call him something else, too."

Another pause.

"You know, he's a really nice kid," then Joseph spoke as if he'd just had a wonderful realization, "and hey, I have another 'pump buddy' now-- that's what I like to call them. Pump buddies."

This was the first time Joseph mentioned anything having to do with diabetes, so I took it as an opening.

"So did you ask Tommy about the Guardian at all?"

"Heck no!" I could see his eyes rolling back in the rearview.

"Mom, do you think we want to talk about diabetes? We have to deal with that stuff every day. Why would we want to talk about that?"

"So what did you guys talk about?"

"Just stuff. Oh, and Andy beat me in chess--I really thought I could beat him. Maybe next time . . . "

His voice trailed off, and then:

"Mom, it was a really good meeting. You know?"

"Yes," I said, smiling. "I know."

Until a Cure

That's the name of Jenny and Tommy's new blog.

They are the mother and son who have just begun blogging about their experience with the Guardian RT CGMS.

Let's all go and give them a warm welcome to the online community!

A Child is Getting the Guardian

Yep. Up here, in Wisconsin.

A young boy who was diagnosed about ten months ago is getting the Guardian RT CGMS.

This boy goes to our clinic.

He's 10-years old.

Just like Joseph.

And I cannot help but feel guilty that we are not making this leap, too. That we've let fears -- surrounding site atrophy, the newness of the technology, and the impact of the necessary financial commitment on our family -- place us in a kind of holding pattern.

I've discussed these issues before.

But still, this boy -- so very similar to my son -- will be hooked up.

I'm tremendously happy for this very excited, very nervous family. Because I know exactly what this CGMS will mean to them.

And really, to all of us, as this boy's wonderfully generous mother will soon be blogging about their experience with the Guardian-- blazing a trail that (with a little luck) the rest of us will soon follow.

Until then, I need to keep a very persistent, green-eyed monster at bay.

The Good, The Bad, and The Not-So-Good

When last I posted we were pondering the question of whether or not we could (or should) get the Guardian RT Continuous Glucose Monitoring System for our son. As I said before, this would be a huge financial hit, requiring some sacrifices. But if it could make things a whole lot better for Joseph, then yes, it would be well worth it.

So, can we swing it?

Maybe.

That's the best we could come up with so far. There's still a lot of financial dust that has to settle post-Christmas before we can make a final determination. In the meantime, I do like the suggestion made by some who commented-- that we should try to become some kind of test case for Medtronics. Not sure if that's even an option, but definitely worth exploring.

Which leads to the second question: Should we even do this right now?

Again, maybe.

I think the pros of getting the Guardian are illustrated quite nicely on Printcrafter's site.

But what about the cons? Well, a few things came to mind as Ryan and I reviewed Medtronic's literature (oh, they were fast-- emailed fact sheets within minutes of our phone chat; brochures via "snail" mail the very next day!).

First, the psychological factor. How will Joseph feel if he has to wear yet another device; insert a second catheter? Will alarms going off at school draw unwanted attention?

Second, this is a brand spanking new technology. Do we want Joseph to be one of the first few children actually using it? Would we rather wait for all of the kinks to be worked out before making this leap?

This morning, armed with these questions, head swimming with the possibilities of this device, I took Joseph in for his three-month endocrinology visit.

First off, the good news. Joseph's A1c was 7.3.

Given all of the insane highs of October and much of November, I was surprised and pleased that he was up only slightly from the previous visit. Joseph's endo reviewed our logs, and thought our recent basal changes were just the ticket. Joseph's late November/December bgs (with a few exceptions on the weekends) have been looking really, really good. She suggested we do an at-home A1c test in six weeks, saying "I think you'll see an even lower A1c."

Next up, a bit out of order here, the not-so-good:

When Joseph took Evan out into the waiting room, the doc and I chatted about the Guardian. And at first it seemed a no-brainer. Joseph's endo thinks the device is phenomenal-- well worth the out-of-pocket cost. That, despite how it's being marketed, it will essentially replace finger sticks. She also thought that Joseph could truly benefit from it, since we need to test so often.

But then we discussed potential problems with the device, and she agreed with my concerns about the psychological issues of wearing the Guardian at school. She then added that the inserted wire could very well jeopardize the integrity of his already limited infusion sites (Joseph is very lean and can really only use his hips and abdomen). This could be a BIG problem for him in the not-too-distant future.

Now, the endo did say that Medtronics is working on a way to use one catheter for both insulin infusion and glucose sensing.

But who knows when that will be available? Clearly, we need to do more research here.

Okay – a bit of a breath here.

Now for the bad.

Joseph's height and weight have pretty much leveled off from three months ago. He's still in the normal range for his age-- between 50th & 75th percentile for height and 25th & 50th for weight. However, the leveling off is not good. I asked if two months of outrageously persistent highs might be responsible.

"Yes," she said, "that could be the case."

"However," she went on, "there could be something else going on here. Something involving another endocrine function."

"Oh."

She then asked me to bring Joseph back within the next month for a first-thing-in-the morning blood draw in order to: test again for celiac; check his thyroid function; measure his "insulin growth factor;" and test for some other things I didn't catch because I simply couldn't hear the words anymore.

I wanted to cry because this is my son. And I can't just provide him with food every day, and know that he'll grow.

And we can't just be glad that we're doing all right. That he's doing fine. No, because now my son is not growing.

I just don't know how this can be.

The Call

After reading Printcrafter's blog over the past week, I found myself -- like many others -- desperately wanting the Guardian RT Continuous Glucose Monitoring System (CGMS) for my son. My previous post illustrates quite clearly why this device would be a godsend.




Well folks, we got the call.




Although Joseph's CDE said she'd put us on a list to try this device, I had begun to think she might have confused the Guardian with its predecessor (a CGMS that did not provide the patient with real-time blood sugars-- only data to be downloaded and analyzed later by the clinic). You see, the Medtronics website states that the the Guardian is in limited release-- seven cities only (and we don't live in one of them). Further, this CGMS is FDA approved only for those 18 and older.

But still, we got the call.

This afternoon, while sitting on the floor doing a jigsaw puzzle with Evan, the phone rang. I didn't recognize the name on caller id-- thus, I almost didn't answer it. But, just before the call would go to voice mail, I picked up.

"Hi, is this Sandra Miller?"

"Yeess?"

"I was given your name by the University clinic... I'm calling from Medtronics."

"What?" Immediately, I got up off the floor.

"I understand that you are interested in the Guardian RT system for your son."

"Yes, I am. Very interested." At that moment, my heart pounded so hard, so fast, I thought it might burst right out of my chest.

"But wait," I said, "this is the Guardian RT, right? I mean, I thought it wasn't available here. That you're only releasing it in seven cities."

"Yes, that's right. But, we have a bit of a unique situation here. You see, because we've worked closely with the University of Wisconsin's pediatric diabetes clinic here, we are offering the Guardian to their patients."

This cannot be happening. Christmas had indeed come early this year.

"Now" I began, a bit tentatively, "Uh.. you do realize that my son is only 10?"

A pause. Probably about two seconds, but it felt much, much longer.

". . . Well you see, Sandy, while it is true that the Guardian is FDA-approved for those 18 and older, we are offering it to kids--- as something called an off-label prescription."

Okay, no one calls me "Sandy," but she could have called me Ralph, and I wouldn't have cared.

"So what do we do? How can we get a trial with this going?"

"I'm afraid there is no trial.

"Huh?"

"The thinking is that, due to the rather steep learning curve of the device, people would be more likely to give up on it before actually experiencing the benefits."

Oh.

And that is when she told me that insurance doesn't yet cover the Guardian. Our cost would be:

$2,390 for the initial hardware purchase

$ 400/month for 10 sensors

And just like that, my heart sank. All this time, I assumed that insurance would cover this.

(Later, I would go back to Printcrafter's site, to his archives, and see where he spells all of this out for us).

With Christmas at hand, car repairs looming, a property tax bill due.... well, this is not going to be easy.

But, damnit, I want this for him so badly.

Last night, Joseph was high. A tiny correction brought him down fast-- maybe a little too fast, as it seemed like he was rebounding up at breakfast.

We test day and night, and still we can't catch it all. We can't truly know what's happening.

Saturday, while I was out Christmas shopping, he plummeted to the 40s, rebounded to the 200s, then crashed to 48 just an hour after dinner.

This was after a week of no lows; no major highs.

And then, of course, there was that 21 on Sunday.

I don't know. I HATE that money is a concern here. If I were working, this would be a no-brainer...

Now, the good news is that once an insurance code is assigned to the Guardian, insurance coverage is likely to follow. Unfortunately, a product needs to have been launched six months prior to when codes are assigned (which happens in January).

Bottom line-- an insurance code will not be assigned any earlier than January 2007.

So, Ryan and I need to sit down and do some math. And we also need to talk with Joseph about this. And see just how and when we can get this for him.

I'll keep you posted.