Monday, February 06, 2006

I shouldn't have been so smug

I thought I'd lucked out and had this extraordinarily well-adjusted child with diabetes. One who rarely complained or felt sorry for herself or shirked her care. I should not have been so sure of myself.

I started really logging O's blood sugar information again, after about 6 weeks of slacking off. And what do I find? I find a girl who is not checking her blood sugars every time she eats, who's just entering the carbs into the pump and going from there. Well, no fucking WONDER her blood sugars have been in the 200 - 400 range. Jesus.

I let her have it on Saturday. She went 6 hours without checking - just put in her carbs. When I did her site change, and she was 465, I updated the log book for the last 24 hours at the same time and found all this missing information. I was very angry with her - I didn't yell, but I did talk rather loudly about how important it was that she do this. That I know it's boring and tedious, but that if she couldn't do something as simple as inputting her bg into the pump, then she was going to lose the pump and go back to shots.

Maybe I was a little harsh, but she's plenty old enough to handle doing that small part of her own care. I don't ask her to log her information - I do that for her - but if I'm not there, then she has to do it herself. I don't know why she's being so stubborn about it. On Sunday she did the same thing, not 24 hours after I'd talked to her about it the first time.

I've been wanting to make basal rate changes, but now I can't because her bg readings are off because she's not correcting any highs she's having. I hate having to check up on her, but there's no other way around it. Someone has to monitor the situation. It's really upsetting me that she's starting to be deceptive about her diabetes care. It makes me wonder how much else she's been fudging.

I'm going to talk to her endo about this. I want to nip this in the bud.

I guess I've hit the terrible teen years. Fan-fucking-tastic.

25 comments:

Nicole P said...

They may not be so terrible (the teen years, that is)... Perhaps it's just a bump in the road for you and Olivia. Does Olivia keep a diary/journal? Does she know other kids with diabetes in the area? Sometimes it's good to just get out the frustration you can feel with this disease. It's the frustration that often lead me to issues like the ones you describe... (ie: "God, I'm just so TIRED of doing this... Skipping one test won't hurt...")

My parents were on me like white on rice when I got into my phases; until I headed off to college and still managed to get myself in D-trouble...

I also wonder if Olivia doesn't sense some of what's happening with you and TCBIM -- she may be having some anxiety and exhibiting that anxiety by screwing with her diabetes control.

You're doing a great job, Julia. You're doing the best you can. All you can do is continue to give your daughter guidance, support, and love; keep an open-mind if she tells you what's going on in her head, and continually let her know that you want the best for her and that you know that this disease is hard -- keep asking her what *she* needs, she may eventually give that information up....

Vivian said...

Julia- Honestly she sounds just like my 14 year old that does not have D. We have the same types of confrontations over grades, chores, friends, ok yes everything these days. I wish we could fast forward this part.

Angela said...

I'm so sorry. Jeremy tries to not take his meds and it is so frustrating. He was washing them down the sink at one time.

Hopefully you and her endo can come up with something!

terrilynn said...

Ack. No advice, just sympathy. FWIW, I think you did exactly the right thing when you told her she'd lose the pump if she couldn't be responsible enough to input her numbers.

Good luck with this. It must be as scary as it is maddening.

Shannon said...

This is where I like hearing how to deal with this from adults who were Type 1 through their teen years (like Nicole).

I like to know what I'm in for in the future and the different ways it is being or was being dealt with.

Thanks for posting this Julia.

Joke said...

FWIW,

Nicole P may be on to something...

-J.

julia said...

Nicole - she does keep a journal but I don't read it. She doesn't have any day-to-day contact with kids with D. We try to do stuff with the JDRF group out of Springfield, MA, but most of the kids we've met thru there have been a lot younger than her. She goes to CBC every summer, but doesn't keep in touch with the kids during the year. I don't know anyone else who has a child with diabetes, other than the JDRF people.

I hope that I'm doing ok by her. I try not to get upset with her when she does things like this, but sometimes I get so frustrated (and being pregnant, trying to buy a house and having all these problems with TCBIM don't help At. All.) that I get angry when I should probably try talking first.

Sometimes I just want to run away. Far, far away.

Ellen said...

Diabetes is 24/7/365 relentless! Anyone with it needs support, even if they don't ask. You're a terrific mother and you are obviously supportive since you log for her and you change the sites.

In my experience, when I get angry about the diabetes, a lot of it stems from tremendous FEAR that he doesn't "get it", or I didn't properly prepare him for adulthood, or I stopped paying attention too early and there will be physical repercussions yada yada yada. My fears end up being expressed as anger. Not pretty.

Back in October, you were understandably concerned she was checking too often. Is she type of person who either does it all the way or not at all? (I'm that way with diet and exercise. Either I'm rigidly following a program and working out everyday, or I'm pigging out and couched.)

Julia, I know you feel badly that Olivia wasn't checking bg, but you admitted you slacked for the last 6 weeks too. Maybe Olivia took that as her chance to relax. I think it would be great if you said to her "I'm sorry I didn't do my part and slacked, but I'm back on track now and together we'll work this out. How can I best help you, Olivia, get back on track?" Admitting to her that you got tired of it and slacked and asking her how you can best support her to get back on track may be a valuable approach.

The best advice I ever received re diabetes was from Dr. Richard Rubin at a CWD conference. "When your child tells you his/her blood sugar is HIGH, there's one and only one response to that statement. THANK YOU FOR CHECKING."

Acknowledging that she DID enter the carbs and that she corrected for the highs when she did is also important. She probably felt like @#$$% with the high blood sugars too and you likely feel badly about that. I think it helps a lot to acknowledge what our children DO, not only what they didn't do.

A ped endo wrote for KidsRPumping.Com "Lots of kids look at their blood sugars like grades. When they see a high one, they feel like they just got a D on a math test. Blood sugars, or hemoglobin A1c levels for that matter, aren't grades, they're more like numbers on a speedometer. Children, particularly young teenagers, hate to see high blood sugars...so they don't like to test them. Their high blood sugars are, in and of themselves, a disincentive to checking them."

Yes Olivia has to check blood sugar more frequently to safely be on the pump. Somehow you will find the way to communicate with her that when things start getting out of whack, you really want to troubleshoot the situation with her so she can feel her best and have the most energy possible with diabetes. She may need to hear from you repeatedly you're there for her and not angry about high numbers. Knowing the numbers gives both of you something to use to learn and make changes.

Dr. Rubin's advice made a huge difference in our lives for a long time. I stopped ranting about the highs, although every high hits me in the gut. I think there were times he was disappointed I didn't react! Not really but we have laughed about it. Z says he conditioned me not to react. However, I recently discovered because I insisted he change his site everytime bg was sky high, he no longer tells me when it's that high. Ha I thought he was so honest with every bg until I discovered I screwed myself by being so insistent.

Overall, my son's done VERY WELL through the teens and if that's what you expect of Olivia, that's likely what Olivia will expect of herself - with tremendous support. Don't let go of the involvement too early. As hard as it is to want a day off, we don't get one. Many studies show the longer we're involved, the better their control will be through the teens. While they walk the tightrope, we try to find balance between good control and quality of life.

It's all a learning process.

Allison said...

Julia-

Even though Olivia is still 11, if she wants to come to the Diabetes Teen Talk message board, she is more than welcome to. :-)

-Allison

julia said...

Allison - is there a link for that on the Diabetes OC page?

Ellen - thanks for your comments. How'd you get so...I don't know what the word is, maybe balanced? My mood over this seems to swing wildly lately. I do try to not react much to highs - and when I do, I say "Well, let's fix that" and that's it. If anything, I tend to put the blame on myself when she runs high and will say that I must have figured the carbs incorrectly, that maybe I should have used a dual-wave instead and we try to troubleshoot the high for the next time.

Nicole P said...

Hi again, Julia,

I think it'd be great if Julia could somehow have the opportunity to talk with someone around her age with the d... Just about being a kid -- the diabetes piece ends up coming up in the natural course of things, but I always found I connected first with other kids because they liked the music I liked or the clothes I had on or they just seemed really neat -- and then the fact that they understood the diabetes made the friendships even better. Maybe Allison knows of someone in the MA area who's her age -- or even a bit older -- that might want to just hang out with her. Also -- maybe consider going to one of the off-summer-season events at the Barton Center...

Sometimes, she's going to get as tired and as frustrated as you are. It's just the way it goes with this disease. And sometimes, she's not going to tell you everything. That's also the way it is. BUT -- you're doing a great job and I know you'll find ways to help her understand the diabetes, and your concerns, and what her responsiblities are going to be. She'll be OK, but you should get right back on your game. So, the Olivia Diabetes Team let the d score a point -- all you can do is move on with the rest of the "game..." I just realized what a terrible analogy that is in some ways. I know that her life isn't a game -- but I think you get what I mean.

PS... If you thought that it would be good for Olivia to talk/email with someone who understands what it's like to be her age and is now a little old lady (in her eyes, anyway), I'm happy to help in anyway I can.

Allison said...

Julia,

The link to Diabetes Teen Talk is off my blog, or you can go to it from here: www.diabetesteentalk.com.

-Allison

Shannon said...

Julia,

My neighbor's daughter is 12 yrs old and has type 1. If I ask the mom if it's ok to give you their phone #, do you think you'd want to call?

Let me know and I'll call them, then email you their number if they give the OK.

Erica said...

I think nicole is onto something as well. There is so much going on in your house that is out of her control, whether or not she is aware of any tension with TCBIM. Kids are so much more intuitive than we give them credit for and this could be how she is coping - one LESS 'thing' to deal with, ya know? And that 'thing' she can control.

julia said...

shannon - I'll ask Olivia if she'd like to talk to the girl. Does she have email? Maybe they could do an email penpal thing. I know she was keen to do that earlier, with another girl, but she never heard from the girl.

Kerri. said...

Hey Julia,

Sorry I'm late to this thread. I don't know any younger kid diabetics, but I offer (as Nicole did) my own email and ear if Olivia would be interested in chatting with me.

And, if I remember correctly, is there a diabetes pen pal section at Dr. Ricker's office? I think Megan (the receptionist) has a list of kids who have left their emails for potential pen pals. I think Clara Barton Camp has the same system. I'll stick their link to the message board below.

http://www.bartoncenter.org/phpbb/index.php

Shannon said...

Julia,

I'll call today and ask. Hopefully they can hook up and talk or write each other.

julia said...

Megan's not there any more, Kerri. :( I liked her, she was always so cheery and nice.

I think I'm going to let Olivia read these comments (not the blog, since I swore like a sailor in it) and see what she wants to do about pen-palling with people.

Wil said...

Wow. I have nothing to contribute (never having been a young girl or a parent of a diabetic child); but I'm just blown away by the collective wisdom and support of the OC!

Sandra Miller said...

Julia,

I'm late to this thread as well.

Man, that's got to be so tough-- for both of you.

Olivia is in that awful transition, from kid to teenager (young woman, really)-- it's such a tumultuous time for everyone.

Add diabetes, and, well, you know.

Anyhow, I wish I had words of wisdom to offer, but really all I can say is just keep at it. Work with her. And as others have said, help her gain support from peers who are in the same boat.

I'm really dreading this time for Joseph-- those teen years are fast approaching for him as well.

BTW, if Olivia would like to chat with Joseph, I could send you his email address (though I know at this age kids tend to relate a bit more to those of the same gender).

Hang in there.

You really are a wonderful mom. And from everything I've heard from parents of teens at my local JDRF support group, what you're seeing -- while certainly scary -- is not at all unusual.

Shannon said...

Julia,

I haven't forgotten about calling my neighbor.

I can't find my address book, but once I do, I'll make the call and then you can take it from there if they're cool with it (which I'm sure they will be).

bethany said...

Julia I've been meaning to leave you a message for a couple of days but have been sort of busy...

Olivia goes to cbc? I didn't know that, I'm a counselor there and I actually had 3 different olivia's in my cabin this summer ... what cabin was she in?

Also if you want I'm more then willing to e-mail pen-pal with her. Right now I email pen pal with 2 other youger girls and I'd love to with Olivia (if she wants)

One other though - have you tried www.childrenwithdiabetes.com ? it's an amazing webite with so much helpful stuff on it ... they update every sunday, but my original point - why don't you let her put up her "d" story on the website like other kids? she can put her (or yours) email address on there and then other kids her age can read her story and send her emails and stuff ... if you'd like to know more about it or how to do it just let me know...

Good Luck - you're doing a great job.

julia said...

Bethany - She was in Shangri-La, this year and last year. I don't remember meeting you, but I met so many people when I was there that they've all kind of blurred together. I'll ask her if she knows you, though. You weren't the counsellor that had to leave early due to illness, were you?

I do go to the CWD website. I guess I forgot about the place where you can leave your own story. I'll have her do that when she gets back from her dad's. Thanks for the suggestion.

Shannon - whenever you get the chance. Things are crazy busy around here, so don't worry if it takes a while.

bethany said...

julia what session was she there? i was in shangri la with kelly sullivan. and yes i ended up getting quite sick ... i was in the hospital for 8 days because they couldn't get my blood sugars about 40. but i was still there for sessions 123 i just missed part of 2 and and the end of 3

art-sweet said...

I love the quote that Ellen gave:

"When your child tells you his/her blood sugar is HIGH, there's one and only one response to that statement. THANK YOU FOR CHECKING."

I think every endocrinologist, nurse educator, etc. should have that branded into their brain. Kids are not the only ones who don't want to check when they feel high because of the reaction that they'll get.

I don't have a lot of words of wisdom for you. It's such a delicate balance. But I wonder if Olivia, while saying she wants independence, is also feeling a little adrift and alone with this disease. When there was a lot of other stress going on at my home, I often felt like it was my responsibility to protect my parents from the stress of diabetes.

I'm rambling now, but I'll try to post on how I - and my family - survived adolesence and diabetes sometimes soon. And I second the offer to be a non-mom grown up mentor if she wants one.