Tuesday, December 06, 2005

Impending Endo Appointment.

Nothing fills me with dread the way an endo appointment does. Olivia's numbers have been all over the place. The CDE we see at Joslin drives me a bit nuts. She talks over me and tends to poo-poo me when I say I want her sugars more in range. She tells me these fluctuations are normal. Yeah, but this is wild fluctuations, not normal fluctuations. I know her A1c is going to be high again and no matter what people say, I do regard that as a report card on how I'm doing and how I'm doing is not so good. If there were a teacher comment section, it would say "Could try harder, needs to apply herself more."

She spent the weekend at her father’s and I swear, he feeds her crap and lets her run high just to piss me off. He refuses to log anything, so I have to scroll back thru two or three days worth of blood sugars in order to see what they were and what her doses were for them. All weekend, she was in the high 200 – 300 range. He never gives her a shot to bring her numbers down, nor does he change her site when she's running high for a few hours. I’ve tried talking to him but it’s like talking to a wall. He says “Yep, yep, yep” and then goes and does whatever he wants. Meanwhile, she’s running high and feels like crap all weekend and usually all of Monday, too. I wish I could get the endo to say something to him, but I've tried that before, to no avail.

Last night I was able to get her down to 180 by 8:30 (bedtime) but then she was 309 at 11:30. What?! Where did that come from? She had a homemade hamburger for dinner. She didn’t want any potatoes, so that was all she had. 30 gms for the hamburger roll. How does that send her to 309? I slept thru the 2 a.m. check, but at 5, she was back down to 145.

I upped her basal rates a week ago, but I don’t think it was enough. I’m really feeling like I’m flailing around these days, just making futile stabs at this stupid disease. It’s very frustrating and I’m sick of it. I want a Guardian or a Navigoator and I want it NOW.

And I’m starting to feel sick to my stomach, oh joy.


Sandra Miller said...


I was feeling EXACTLY the same about Joseph's blood sugars just two weeks ago. Then my husband went out of town last week, and I did some serious testing of Jospeh's overnight basals.

The result-- all last week, Joseph's numbers were very good. Took a whole lot of work though, and not much sleep (checked him about every 2 hours every night).

On the homemade hamburger-- when we make burgers, I usually do an extended bolus (because of the protein) AND since burgers are pretty high protein, I figure out how much protein will convert to carbs (according to a formula I got from Shannon's site here) and add this to the other carbs.

Julia, please don't beat yourself up about the A1c-- I'm bracing myself for Joseph's visit next week (his bgs have been insane over the last few months). We work hard at this, but sometimes an adolescent's hormones just make things way too unpredictable. At least that's what a number of parents of teens I've met at my local JDRF support group have said. They've assured me that all bets were off once their kids approached puberty.

Of course, we've got to keep trying, but know that puberty is just gonna make it that much harder (if not impossible at times) to keep really good control.

And I'm sure it doesn't help having an uncooperative ex in the mix.

Hang in there,


Major Bedhead said...

Thanks for that link, Sandra!

I'm going to have to do basal testing over the Christmas holidays. I have two days off work, so I can get four days in, at least. I never thought that I'd need an extended bolus for a burger. She never did before, but as usual, this stupid disease keeps moving the damned goal poasts.

Kerri. said...

"The Endo" can be sort of nonchalant about the whole thing. Oliva's endo (if I remember correctly) is the same endo I had for 8 years. I loved her dearly, but she was really good at making me feel better about rangy numbers vs. pushing me to reach a tighter A1c.

Granted, I was going through the divorce of my parents at the time so I was extremely emotionally troubled for the better part of two years, but I think I needed the Strong Arm of the D-Law through some of that.

And on the "hamburger maybe needing an extended bolus" tip, I never had to shoot for a cup of coffee until this year. The goal posts do keep moving, but we chase them relentlessly, cursing under our breath and carrying a syringe.

Good luck.

Frankie said...

Was just going to say that what your ex is doing sounds an awful lot like that big bad word: neglect. Fathers lose visitation over stuff like that. Might not hurt to get an attorney to send him a letter letting him know that. This is serious stuff.

Thinking of you and the new baby. Oiy.

rae ann said...

i'm one of those people who is completely oblivious to the in's and out's of this disease, but i'm aware that it exists and that it's awful. julia, i just want you to know that you're supermom. O is so lucky to have you as is the mini-munch and this new baby on the way. don't beat yourself up- you're doing as much as you know to do and as much as you can. i admire you and think you're amazing.

Ellen said...

Have you considered seeing Dr. Stuart Brink at NEDEC in Boston? 21 years ago he put my friend's then 3 year old on the pump. He's proactive and brilliant. He may not have the bubbliest personality, but he makes up for it with knowledge...and he would salute you for wanting more predictable and smoother control.

Stuar Brink
WALTHAM, MA. 02154-1132 USA
TELEPHONE: (781) 890-3610
FAX: (781) 890-3612