Monday, December 12, 2005

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.

16 comments:

Kathleen Weaver said...

You probably saw what I think about the Guardian at the current time for me.

Now, I'm an adult, I'm a Type 2, and my blood sugar is much more stable than the average Type 1.

That said, I definately would not go for the Guardian if I were you and your kiddo, if I didn't get a chance to wear it on a trial first.

I'm just not sure that there is enough real estate on my own body, and I'm pretty large around, and I can't imagine putting all the Guardian equipment on a little kid.

Having worn lots of interesting medical equipment at school, I'm not sure it would be a problem. However, I'm a teacher, and I do get treated differently than students do, and plus we have an extermely diverse population. So diverse, that no kid really dares to be *st, be it racist, sexist, or bias based on medical stuff.

When I've had to wear an 24 hour PH monitor, we all joked about hooking the CS teacher to a computer finally.

Of course, it was for 24 hours, and my school may be very different from yours.

One of the reasons I teach there, is that I love the diversity.

Megan said...

I have had multiple pH studies, and I would never have worn one to school. But that goes down your nose, so it would look much grosser than the guardian. At the same time though, the guardian is bulky. I have only been reading for awhile, but I get the impression Joseph is pretty active. I have heard it falls off easily, and that could be a problem knowing how expensive the sensors are, and how active any young boy is.

Also, I have heard that accuracy is nothing to be praised. However, I am sure your endo knows more about that, and if she thinks it will mostly replace finger sticks, that is awesome.

Those would be my major concerns. At the same time, it sounds like such promising technology. I would love to be able to use it, but I want to let them perfect it. You read my blog about my week's bs, so I could benefit from it too, but I am not jumping on it just yet.

But this is me, and you need to consider your boy. You know him best.

d double e said...

Sandra-
First, on the Guardian, my own feeling for Bailey would be to wait.. even if its a year... for the technology to improve. While I am sure it works well now, its only going to get better.

As for the new tests, the "joys" of being a parent never cease. Growth slows, its stops, it starts again.

And just what you need.. more sleepless nights.

I know its going to work out ok though... and I'm not just saying that.

Dee

Wil said...

Sandra--Important for me to tell you the Guardian will not replace finger sticks; although it may reduce them. Official company line is one stick every 12 hours to keep her calibrated. After some recent trouble that you've been reading about over on my side of the Blogosphere the help line told me to try to do a finger stick every six hours (but not in the middle of the night).

I've been having some trouble with mine these last few days. But I also had two perfect weeks prior to that. The million dollar question wich is still resloving itself is: which is abnormal and which is normal? We'll see.

Assuming all goes well on the tech front I think the biggest question is how does Joseph feel about it. Does he want one?

IF (capital IF you note) his sugars are stable enough that there is not a high risk of something really bad happening...and you all know what I mean...then waiting even six months for those of us on the cutting edge to work out the bugs and prove the system's worth (or send it packing with the GlucoWatch) makes a lot of sense.

At the same time, however, there is a huge boat load of money to be made if Medtronic can start selling these for T-1 kids.

Why not try to work with them to be some sort of test case. Tell them you'll pay for the senors if they give you the machine, or visa versa.. What do you have to lose? If they say yes you can work with the equipment with less $$$ risk to your family. If they say no you can always get out your wallet later.

Anyway...sorry for such a long reply...didn't mean to ramble on post-length.

Violet said...

Sandra, just a word to tell you I'm thinking of you guys. I know you'll get to the bottom of the growth mystery. And Joseph will thrive.

julia said...

Sandra - I'm going to see a demo of the Guardian on Sunday and will let you know what I think. I also spoke to Olivia's CDE about it and she thinks waiting is a good idea - both to work out the bugs and so that insurance might cover some if not all of the cost.

I'm sorry to hear about the other possible issues with Joseph. Hopefully it's just an odd growing pattern.

Vivian said...

Sandra,
Please let us know how the follow up goes with Joseph. I cried for you both when I read that there could be more possible obstacles for him. Now I will be praying for him and for you, we just have to believe. Anytime you need it you have my cyber shoulder.
Vivian

Sandra Miller said...

Kathleen,
The school that Joseph attends is also extremely diverse (one of the reasons we chose to live in this district)-- they're very sensitive to any form of discrimination.

Though still, Joseph is one of two diabetic kids in the whole school. And after this year, he'll be the only one.

Megan & Dee,
Yes, waiting a bit on this, so far, is where we are leaning, however...

Wil,
We've spoken with Joseph about the Guardian-- without telling him how quickly this really could happen (I don't want him thinking about the money issue).

At first he wanted nothing to do with it, saying that he didn't want to wear another thing. But then yesterday, in the car ride home from the endo, he said, "Mom, can the Guardian sensor transmit through clothes?"

"Yes, I'm sure it can."

"Then maybe I could put the sensor on my arm, since there's no tubing. I could do that! Mom, I think I want to get the Guardian."

"Hmmmmm...now, what about the alarms? They might go off during class..."

"Cool. Then I can say, 'Hey everyone, guess what? I'm goin' low.' I think that'd be cool."

I don't know if an arm site is even an option, but it does seem that Joseph has been thinking about this, a lot...

Violet,
I read your comment and broke down, yet again. My head is telling me that this is all because of the recent high sugars, but bottom line, my son hasn't been growing the way he should. And I can't seem to get past that fact without crying. I will soon, but yesterday, this morning, no.

Julia,
Good luck on Sunday-- I'll be interested to read of your (and Olivia's) impressions... and yeah, an odd growing pattern, I really hope so. Joseph's always followed the same curve, always.

But he is approaching puberty, so maybe, just maybe, all bets are off.

Kerri. said...

On the CGMS front, I'm waiting until it integrates with the insulin pump. As much as I love the idea of the constant sugar results and the concept of "freedom," I can't help but feel tethered as it is. My mental state wasn't ready for a pump for a number of years. And it may take some more time for me to become acclimated to the idea of another device. But regardless of how long it takes me to integrate all these new technologies, I will be content with my life along the way. The pursuit of good control will not own every moment of every day for me. Because then I'm nothing more than diabetes.

And I know I'm more than that.

On the other variables on Joseph's appointment, again, you have my utmost respect and admiration for being the parent of a diaebtic child. Every moment for you is touched by this disease, as you try and make every moment as "normal" as possible for your son. Having no children myself and still sort of feeling like a kid sometimes, I'm not in much of a position to tell you everything is going to be okay, but I'm going to say it anyway.

It will be okay.
You guys are strong.
And you love each other.

That supercedes everything.

Kassie said...

Sandra,

Consider the fact that most kids get weighed and measured once a year (at most) so this kind of close attention to growth patterns will naturally flesh out "potential problems".

It sounds to me like you have an on-the-ball endo who is going to pounce on issues and get them out of the way for you, rather than waiting to see if an actual problem develops. It sucks that you have to go through this, but you, and Joseph, will be ok. I promise (and the word of a fellow OCer is pretty valuable, right?)

Andrea said...

Sandra-

I feel for you... I'm sure that it's very difficult to know what is best for your son. All parents want their kids to be happy and healthy...so it's understandable why this is not an easy decision to make. I think you need to do what your instincts tell you to do. Listen to your gut. If you can afford it financially and your instincts tell you that this is the right move, then proceed. If not, maybe hold off until you are more certain. I wish I was able to help you more with this. Honestly, I don't know too much about it, but it does sound promising.

As for the further tests Josesph needs, don't automatically think the worst. I know sometimes we can't help it- we expect the worst case scenario, but usually things aren't as bad as we imagine. Whatever happens with these tests, your son will be ok. Trust in that. He'll get through it and he'll be alright.

Shannon said...

On the subject of Joseph's growth, couldn't it just be a normal lag? Like Kassie said, he's weighed and measured every few months, rather than once a year where stagnant growth would be a concern.

Brendon goes to checkups every two to three months and there have been times when he stayed the same height and weight.

Definitely go through with testing him for the problems the Dr. mentioned, it couldn't hurt. But, try to relax about him having yet another condition. I'm rooting for you guys.

Melissa said...

Sandra,

My heart just breaks for you and your family. Your son is in amazing hands and is so lucky to have this crazy cool team around him.

If he needs the gardian it will happen. This I am certain of. You are creative and caring and if you can get yourself in front of a news camera someone will help.

As for your son's growth, I know this is scary, but I had problems growing as well because I was such a sick child. It took me awhile to catch up but I did. I would have to ask my mom what was wrong with me but I have been a late bloomer my whole life. I even got the DB late.

My prayers at thoughts are with you in this wonderful season of giving. Who knows, maybe he's not supposed to have the Gardian now and will be a part of the trial where they combine them in the coming years. It's all about the bright side. It has to be.

Erica said...

Sandra,
I'm not sure I have any more comforting words than what has been posted before me. Just know that there are so many of us thinking of you and Joesph. There is a quote about being a mother(and I'm sure I've mangled it) that rings so true to me: "...it is forever watching your heart walk around outside your body."
{{{hugs}}}

Erica said...

Aha - here it is! "... It is to decide forever to have your heart walking around outside your body." by Elizabeth Stone

Nicole P said...

I have come back to read this post several times now, each time, wondering what words of comfort or wisdom I might offer.

I realize that nothing I could say would ease any of the worry or frustration or sadness you must be feeling. But I hope you'll know that your love for your son and your support of him as he faces whatever challenges are to come are what matter the most. No matter how many times health concerns have dealt a blow, my parents' unyielding love and their belief in my strength and resilience have been like a port in stormy waters - providing comfort and a feeling of safety. Your son will draw on your strength -- and you, no doubt, will draw on his.