Thursday, February 15, 2007

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.


25 comments:

Vivian said...

Sandra, I am so glad that you posted this. Daniel sleeps through everything as well. I have worried about this subject every night at 12 and 3.
Very exciting about his growth, that is awesome. I am sending you a really huge hug. Our boys will get through all of this, I believe!

Kerri. said...

I know this feeling all too well. That "low in the middle of the night" feeling and being thankful that someone was home to help me, be it my mother, my college roommates, or my boyfriend.

I wish I had something reassuring to say about this, but I'm not sure I do. I had a conversation with my mom about an hour ago about how Chris is going away to LA for a few days and I'll be staying alone.

"I'll check in every morning. Call me if you don't hear from me by 9 o'clock. And call my boss if I don't answer. I'm giving my spare apartment key to a workfriend as a just-in-case."

"I'm marking it on the calendar now," my mom responded.

This is my life. These are our lives - monitoring, taking careful preparation steps, and thinking about and planning for all the unthinkables. It's a strange mindset to be in all the time, but I find myself constantly expecting the best, while having a well-thought out backup plan for the worst.

However, I did elementary school, high school, and college without a pump. I survived all of it - and had a hell of a fun time - even with diabetes.

So I can assure you, Joseph will be just fine. You will worry constantly, as my mother did and still does, but he will be okay.

Again, I'm reminded how much you parents do for us diabetic kids. Thank you, thank you, a million times over for making our lives so normal despite these incredible hurdles.

Megan said...

Lows at night are definitely scary. I am sure I have them, and very rarely wake up with them. I don't think most people do. I talked to my endo about it too, and, short of a CGMS, which cost is prohibitive for me, there's not much that can be done. My endo assured me dying from lows is very rare. Most lows we sleep through our liver takes care of. It still scares me though.

Chrissie in Belgium said...

You should never feel sheepish about the need to talk! We all need to get it off our shoulders. First of all Joseph is only 11 - he is not going off to college tomorrow. You are absolutely right that way befor that time you have to make him responsible for himself. Maybe you could take turns - you check one night , then Ryan, and then Joseph AND you. Use an alarm clock. Or maybe on just Saturday nights Joseph and one parent can set therir alarm clocks. Try and make Joseph responsible for getting HIMSELF up some night during the week. He has to know how to do this. You also have to judge how low you want him to be before bed. You have to judge when it is necessary - every night or just when he has been very active during the day. AND don't get terrified - usually Ds have hypos and their own body gets them out of it. One wakes up with a high test in the morning due to glucagon from the liver. i wake up without an alarm clock. Only when Per is gone do I ALWAYS set the alarm clock! Take it gradually - but Joseph has to be independant of his parents before he goes to college. If I can put my two cents worth in - that is what I suggest.

Jay said...

I'd go get him a dexcom. I have been getting 14-21 days per sensor. Each sensor is $35, so $70/month.

Nicole P said...

Sandra - I read this with a solid, painful lump in the back of my throat. This must be horribly frustrating - and I'm so sorry for that.

But I think what Kerri said is right. We live our lives with a plan - a way to catch ourselves before we actually fall.

My mom - to this day - if I'm going to be home alone overnight or if I'm going off on a business trip - will be filled with questions/back up ideas, "Is Bob going to be home first thing?," "Will you have a roommate?" She'll call me and check in, she'll call my boss or a designated friend if she can't get me. Bob, too, is accustomed to backing me up - he wakes me up if I seem too fidgety, he ensures that I can string together a solid sentence before he leaves for work in the morning, he calls repeatedly if he's not heard from me by a certain time.

We make the adjustments we need to make. And our real "guardians" are our parents and our family members and our friends who help us to live well - who bear much of the weight of our worry.

Take this one step a time. Insurance coverage will come - and who knows - given the pace at which this technology is advancing - when insurance will cover it, perhaps the pieces won't be as bulky - and the way the system works will be more accurate.

Joseph is lucky to have you, you know - and Evan and Ryan.

Lindsey said...

Sandra,

Hi, I have had type 1 diabetes since I was 9 and I am now 28. When I was younger, I would sleep through every low and it would be my parents in the next room who would hear me having a horrible low. I had no clue until I woke up feeling naseous from the glucagon shot. When I moved off to another state right out of college, my parents hated that I was all alone in the middle of the night. I was scared too. But ironically, I have woken myself up every time since then when I am low in the middle of the night. To this day, my body responds better to lows at night than in the day! It's a prayer answered from above. Just last night, I woke up to a BS reading of 52. I woke up, ate something, and then went right back to sleep when it was 99. Sometimes I eat a little more than normal so that I make sure that I stay elevated the rest of the night. I know how scary it is and I can remember how scared my parents were. Someone's watching over each one of us!

Minnesota Nice said...

As usual, excellent, wise comments ahead of me.
1) The growth spurt shows that Joseph is getting the nourishment he needs via good control.
2) I'm sure if the AlC had been available 25 years ago, before self-management tools became available, we'd all have tested at 10 or higher. Look how much better Joseph is doing. I too believe that he will be just fine.
3) I sometimes sleep through hypos, and I'm still around (complaining about the cold weather).

Anonymous said...

Sandra,
I continue to be awed by parents like you. You are doing everything right and it shows.
Colleen

cassandra said...

Sandra,

You are such an awesome mom! And reading your posts made me really realize how fortunate I am to have a mom too. Mom's are just, so awesome. And dad's too.

Lows are scary. I always thought that I wake up when I have a low, but now I wonder if that is only a small percentage of them, and that I generally sleep through them all.

But, technology is getting better all the time, and Joseph has some time before being on his own, thankfully.

http://everydayoftheyear.blogspot.com/

Molly said...

Sandra.
Seems like all has been said. I've had diabetes for 31 years, and never have been able to wake up for a low. Had many glucagon shots as a child, many alarms set in college, and have not lived alone as an adult. I got sick of being so dependent on people, so I got Dixie. (my service dog who alerts me when I'm low or dropping) It's another inconvenience to have a big, black dog around...but it has given me so much of my life back. I don't feel like my life has been compromised. I just figure it out. I, like you, am tentative to use a CBGM because of the additional site. Even if it can be left in for 20 days, it still damages tissue that I desperately need for infusion sets. Joseph will figure out what he needs. You have taught him well, and he will be able to problem solve through this.

Scott K. Johnson said...

I too am frustrated that the tools we want cost so much. But, I think that the whole CGMS field is very young, and we will see major advances in both the technology and availability (affordability).

Sandra Miller said...

Yesterday, I read everyone's comments and then couldn't find the words to respond. (Just kept getting too dang emotional.)

Thank you.

For the much-needed support. For the much-appreciated glimpses of your experiences growing up with diabetes, and how you (and your parents) dealt with that time when you went off on your own-- and how you deal with this now. And for all of the wise words of advice.

I can't say that my fears are all gone-- don't think anything (short of cure) could remove them, but I feel more confident that Joseph will be okay.

Again, thank you.

MileMasterSarah said...

Sandra,
I don’t always wake up, sometimes I do, sometimes I don’t. It is a big fear of mine, because the lower I go, the less likely I am to wake up. The good thing is, I’m still here. I wake up every morning.

Carey said...

All we have is hope. Just imagine the advancement that will occur by the time Joseph goes to college.

As down as I get with this friggin' disease, I'm truly excited about the future. Thank god this is not a disease with no hope in sight.

It's hard for me not to visualize future Charlie when I read your posts. I can't thank you enough for such invaluable insight.

Greg said...

Geez, I'm coming up on 21 years now. In that time, I've had one really bad problem with an overnight low, when I was 16. Some other more minor problems I was able to deal with. My other really bad problem in that 21 years was during the day. My endo said that problems with hypos are 'rare' and in my experience that's probably true. Doesn't mean it's not scary.

Problems with highs are also a pain, but none of those has ever become dangerous such that I needed outside medical attention for them.

You touch on so many different aspects of the disease - highs, lows, college, growth, that can't possibly be commented on in a short response.

Yeah, it's a tightrope, and you can stumble, but it's probably harder to really fall than you think with at least a modicum of responsibility. Obviously, the long term consequences are disquieting, but you try and avoid those the best you can.

As an aside, no one else in my immediate family has had Type 1, but I'm 2 inches taller than my dad and 4 inches taller than my younger brother. No, it's not a representative sample, but an interesting case study.

Rachel said...

From Greg's mother:

In 1986 Earl and I hoped for a quick cure for Type 1 with islet cell transplantation. That was 21 years ago, and for all intents and purposes nothing has progressed on that front. Now the hope is for stem cells, but in another 21 years I bet there won't be much progress on that front either. Maybe in 50 years??? Who knows.

When a family is first confronted with Type 1, hope for the future reigns supreme. As time goes on, everyone realizes that research and development moves at a snails pace. We have seen progress with glucose monitoring, A1C's, and better insulins. All those improvements make for tighter control but have the downside of causing more hypoglycemic episodes. I'll be honest here, really tight control may not be such a good thing.

Sandra can hope for something by the time Joseph goes to college, but she can't dwell on that. Hoping for too much too soon increases the sense of sadness and frustration she's feeling.

I think it's crucial that children be allowed to manage diabetes as much as possible on their own. It sounds like Joseph isn't ready for more equipment even if they could afford a CGMS. As a parent, I would have to respect that. He's only 11 and more "stuff" may make his life more complicated even if it might make his parents feel better about his diabetic control. I don't know how Greg feels, but I think one of the best choices Earl and I made was to teach Greg to adjust his insulin according to what he ate and what activities he engaged in. He could eat and do pretty much what he wanted. I think that's why we took off for China only months after his diagnosis. We wanted to go there, yes, but we also wanted to prove to Greg (and ourselves) that the disease did not have to limit his life. That's where we found the reassurance and hope for the future. It was the best treatment for all of us. Concentrate on the present, not the what the future may or may not hold.

Obviously, Joseph's parents must oversee his treatment and be responsible for him, but they must very carefully weigh how Joseph feels about his treatment. Forcing treatments on kids can make them rebel, and Joseph is closely approaching those teenage years where his diabetes will make him feel even more different. Give him as much control as he can handle, but be there for him when he needs support.

Anonymous said...

Unless it is soon after drifting off to sleep, E. does not feel lows at night either. Of course, that makes sense, if in a deep stage of sleep vs. a light one. Continuous blood glucose monitors are here, they can only improve. The Navigator is reputed to be the most accurate of all of the continuous monitors and you do not even need to wear a pump at all to use it. Yes, it does look a little bulky to me; the Dexcom looks to be the least bulky. I think insurance will pay once it has been demonstrated how accurate they are, once they are no longer deemed "experimental" and once patients demand it. I certainly look forward to a lot more advances than just a continous monitor in the next ten years. Artificial pancreas, perhaps, or an implantable continuous glucose monitor. The technology is here; it just has to be perfected. I doubt that parents will ever be worry-free, but things should be a bit easier for us.

Terrill said...

I read your post with tears in my eyes. I wish that we could get the CGMS for our 11yo ds as well but it will have to wait a little longer.

I was told that Animas and Cozmore pumps would upgrade their software for the CGMS shortly but I don't know how accurate that is.

Thank you for telling your story. I haven't told mine yet and it helps to read yours.

Penny said...

Sandra,

I'm not sure that I have anything to add to all the excellent comments you've already gotten. I just wanted to say that I can identify with everything you've said.

((((HUG))))

Tiffany said...

Sandra,
There is a lady on Insulin Pump Forums (www.insulinpumpforums.com) who won insurance coverage for the Paradigm RT CGMS sensors through United Healthcare. Her daughter is just a toddler and she's having great success with the system; I'm sure she'd be happy to give you info :) I know that it's hard to wear another piece of equipment, but maybe it would help Joseph to know that he doesn't have to wear it all the time. I take a couple of days off each month from wearing mine and it's an easy transition. They're really worth it though, Sandra.

Puberty is so hard; I totally feel for you and Joseph. It will get better though. You are working on putting great tools into Joseph's box for the future, and that is what makes the difference.
Oh, and I should mention that 9 times out of 10 I wake up when I have a hypo while sleeping (having the CGMS has further confirmed this). I believe this is the result of two things: my control is very good with very few hypos (meaning my counterregulatory system functions quite well for a Type 1), and my mom, when I was a kid (and mortally afraid of going low during the night) told me that, even when I'm sleeping, I can still feel lows and I can tell myself to wake up. Yeah, I know it sounds corny but I really believe that just that mental awareness helps. You are doing an awesome job of helping him to achieve good control, which is going to follow him into adulthood. Who knows, maybe that will make all the difference :)

Anonymous said...

Sandra, Are you aware that JDRF is doing a study using CGM's? It's called the artificial pancreas project and they are accepting kids over age 8 into the study. Here's a link: http://clinicaltrials.gov/ct/show/NCT00406133?order=1
I'm not sure if there is a site near you, but you might want to check into it.

Good luck and thanks for writing. I'm a lurker and a mom to a 9 yo type 1 dx'd at 6 yo.

Kathy

Jess Riley said...

I'm impatient along with you, but also hopeful that by the time Joseph is at school there will be a user-friendly tool to help keep him safe. My thoughts are with you guys....*hugs*

Sandra Miller said...

Thanks for the support-- you people are awesome.

Also, thanks to those of you who shared your experiences with this issue (and Rachel, for your mother-in-law's perspective).

It's hard not to worry about those overnight lows-- you see, Joseph is (and always has been) an incredibly sound sleeper. Sigh.

Anyhow, Tiffany-

I'll check again on the insurance coverage.

And Kathy-

Thanks for the tip. Looks like none of those trials are taking place in WI (closest one is in IA). But I'm going to investigate it, anyway...

Jennifer said...

Hi,
My daughter is 5, and we have been using the Dexcom CGMS for about 8 months. (She also wears an Animas pump) It is a lot less hardware than the Guardian, in my opinion. Also, our BCBS did cover it, and continues to cover the sensors. We do leave each sensor in longer than a week, which increases it's accuracy, and decreases the cost. It isn't perfect, but does help catch lows, which is what we wanted it for. I just wanted to let you know our experiences with the Dexcom have been good if you ever considered going this route.