Wednesday, February 01, 2006

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.

15 comments:

Meredith said...

Just fyi, there are two other CGMS devices coming relatively soon (relatively in FDA terms). One is Abbott's Navigator, and early testing shows it's better at detecting lows. The other is from Dexcom (www.dexcom.com), and who knows, but I like the pictures of their device.

These devices are still in their infancy, and waiting is probably to your benefit -- and Joseph's.

Hang in there .... you're doing a great job.

Ellen said...

I look forward to her blog.

I don't think the Guardian RT is right for my son. From Wil's descriptions, it involved more frustration than my son would be willing to deal with.

I'm looking forward to the Navigator. There was a person named Phil at DiabetesTalkFest chatting one night about his experience with the trials with the Navigator and he was very happy with it.

Sandra Miller said...

Ladies,

This is very encouraging to hear.

I'm really not all that familiar with the alternatives to the Guardian. I'd heard mention of the Navigator, but not much more beyond that.

I'll have to do a bit of research on these alternatives...

Thanks!

J said...

I think your doing what you think is right for you at this moment trust your gut and go with it. I did try the CGM for a 3 days download to see if we could figure out why my sugar was going so crazy.. I felt like I was wearing a tool belt between my pump and the CGM and my pager for work it was cumbersome. I think a lot for a kid to handle. Not to put off anyone from trying it just alot to know and learn and I am not sure I could have handle that at 10. I could barely grasp that I had diabetes and once puberty hits that is enough to think about. I think we are in the right direction but go with how you're feeling.

Vivian said...

Sandra,
You are an awesome mom!!! I know you really wanted this for Joseph. We would all love to have that second helper, especially during the night, but there is a reason for the wait. Hang in there and know Joseph is going to do fine and so are you. Look how much you have accomplished and you did that slow and steady, not by jumping out without research and knowledge. *Sending you hugs*

julia said...

If I had the money, I'd get one, but I don't have the money. Minimed is supposed to come out with an integrated pump/Guardian next year sometimes (which I'm taking to mean 2007), so I'll probably wait for that.

I know someone who has a Navigator on her daughter and she absolutely loves it. I'd go with either one, really, but only if/when they're covered by insurance. That's the only thing holding me back.

I can totally understand why you wouldn't want to have this on your son. It is another device and it's cumbersome and it's yet another reminder that he has diabetes. I think Olivia and I are kind of beyond that stage, but it's been over eight years and it's just our life at this point. Does that make sense? I'm kind of rambley and dopey today....

julia said...

Yeah, so I need to learn to READ before I comment. Totally missed the part where you said you can't afford it (me either). Kindly ignore my previous blather and excuse me while I go re-boot my brain. Oy.

Caro said...

I too have battles with the green eyed monster. Mainly because I always want the next big thing straight away... or better still, yesterday.

But as others have said, there are very good reasons for waiting. Medtronic are the first to market their continuous monitoring technology, and at the moment have no competition. When the others come along, they'll be entering into a market with competition - they'll have to compete on price, and also on quality.

The RT is a great thing, but it does have its drawbacks, particularly on sensitivity in reading lows, where it tends to lag behind in time, and sensitivity in reading highs, where there is a lack of correlation with actual blood glucose values that has nothing to do with time. (i.e. with a low it will get to the same number, just a little later. With a high it may never get there at all.) These drawbacks are understandable in new technology, but this thing isn't cheap. Its a huge investment, especially when there is no trial period. None of us know how well it will actually work on our bodies, and in our lifestyles, until we've got it on... and are considerably poorer.

Hopefully the Navigator and others will iron out some of the crumples, and hopefully the technology will gain acceptance and insurance coverage.

If money was no object, and the sensors didn't cost 50 GBP, (around 90 USD - they're more expensive here!) sure I'd get one in an instant. Wouldn't everyone? But right now the financial sacrifice would take more out of my life than I think the Guardian would give me back.

Many others have said it, but I agree, you are doing a great job and I've no doubt you'll continue to do so.

(Apologies for the length, this is practically post size!)

Jamie said...

I understand your frustrations Sandra :)

I think that I will just sit back and see how the next couple of years go on the glucose monitoring systems and pumps go. The ultimate would be to have a machine that does both (which it looks like they are working on that) and wait a little bit longer until the wrinkles are ironed out. I guess where its easier for me is that Dani is still so little and we have three and a half more years before she even goes to school to wait for this stuff (not that school is the end all for us - it just will be a big step for her and having something like that with her would be a Godsend).

I look forward to reading this womans blog on how it works on her son.

Sandra Miller said...

Julia,

You said you know someone who has a Navigator on her daughter-- is she part of a clinical trial? I'd love to know how she was able to get this for her...

One of the most interesting things I've read about this CGMS is that Abbott is trying to get FDA approval for the Navigator as a replacement for finger sticks (unlike the Guardian, which requires finger sticks for calibration)... hmmmm...

In the meantime, Jamie-

Check out Tiffany's latest post. It seems Minimed's pump/CGMS combo is available NOW in Canada!

Though you may not be ready for this yet, it looks like when you are, it will surely be an option for Danielle.

julia said...

Sandra - The girl's name is Lauren Lanning and her mother is on the CWD arents email list. She's posted quite a few times about it. If you don't want to join the list, I believe you can still join to just read the list online. go to www.childrenwithdiabetes.com and click on the mailing lists link on the left hand side of the page. There should be directions for how to subscribe to read online only. The list gets a LOT of mail.

Her posts have been very informative and very encouraging, even if they do make all of us jealous as hell.

Jamie said...

Woah! Sandra LOL - I didn't realize it was already on the market!!! I admit, I don't do much research on the lastest technology as right now I'm still in the "OMG, my kid has Diabetes!" Phase.

wow, wow, wow. And in my own country too - heh. I'll DEFINATELY be keeping my eye on this one!

Thanks for letting me know!

Red (Aus) said...

It will be years before anything like that reaches my shores. I enjoy reading about them though knowing that by the time they're available to us they 'should' be really reliable machines.
Sometimes I think I'd like to have one now, and then other times not. Taylor has taken so well to the pump but I don't think she'd really handle another thing to wear.

Sandra Miller said...

You know, Karen (Red),

Joseph and I talked about this just last night. When I asked how he felt about us waiting, he said:

"Mom, I really don't want to wear anything but the pump. I just don't want to have to keep track of it.

And I also don't want anything that doesn't replace my meter... if I'm gonna have to stick something else in me, I don't want to have to keep sticking my fingers, too."

So for now, I guess it's okay that we wait.

Will H said...

Medtronic has made such an incredible pump and their research into an artifical pancreas over the last 20 years makes them highly qualified to manufacture a continuous BG monitoring system that works. I am going to pay for the unit and supplies for a year and hope that my insurance picks it up as soon a s possible. I think the benefits of lovering my A1C is worth it.