Friday, April 13, 2007

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Charlie's quarterly doctor's visit came and went about a week and-a-half ago, but I didn't feel like talking about it.

He hasn't gained any weight since December, but I didn't feel like talking about it.

He was as strong as ever while they took his blood, but I even didn't feel like talking about that.

His A1c was 9.6.

Nine point friggin' six!

Charlie's been on the pump for about 6 months. We're going in the wrong direction.

We're starting from scratch. A clean slate. Throwing away our gazillion insulin-to-carb ratios and basal rates. Fresh start. Talking with pump educator every day as if we just started on the pump.

Ever the optimist, I'm anxious to get to work on this new plan of attack.

Gotta go make my 10 am phone call to my wife to see if Charlie is in range 3 hours after breakfast. Crossing fingers.

Have a nice weekend.

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Blood sugar update: 158

BUT ... that was after 4 hours. After 2 hours, he was 400. That's the thing we've noticed about Charlie. He will eventually fall into range, but it usually takes 3 hours or more to get there. So, he's high for quite some time. Do most of you fall into range after 2 hours? I know adults and kids will differ on this. Also, curious to know what percentage of your total daily insulin is bolus and what is basal. That may be an issue for us as well as Charlie's intake is very bolus heavy.

15 Comments:

At 8:01 AM, Blogger Shannon said...

We've had to go through the "starting over" with basal rates and bolus rates, etc.

Have a great weekend and may you work out the kinks!

 
At 8:04 AM, Blogger Penny said...

Oh, Carey,

I'm sorry. I know how frustrating it must be.

Riley hadn't gained any weight since December, either.

I guess the best thing to do is what you're already doing. Start over. (But, God, how depressing, to start over from scratch) and keep in contact with someone regularly to adjust.

Don't know if I can be of any help, but you can email me with questions if you'd like. I know Riley and Charlie are close in age. Riley weighs 37.5 pounds and his total daily dose of insulin is about 9.8-10 units. His total basal is 4.7 units.

But, everyone is different and has different insulin needs...

I'll be thinking of you and Susanne and wishing you the best.

 
At 8:36 AM, Blogger Jonah said...

I'm an adolescent. My insulin needs vary wildy. My basal: bolus ratio can be anything from infinity:0 (no Novolog because my blood sugar is falling all day long or I'm not hungry) to 1:3 (needing to give a lot to cover food) on any given day.

My blood sugar usually doesn't go very high during meals unless I'm eating sweets or potatoes or something like that- otherwise, it doesn't go above 250, and usually not above 180, in the middle of the meal- it doesn't really start going up until an hour and a half after I eat, and then I see the final result after about two and a half to three hours.

If I know that I'm spiking weirdly and/or my ratios are off, I try to stick with small meals.

 
At 8:36 AM, Blogger Kerri. said...

Dude, I am so with you on this. I need to clean slate my whole diabetes regimen right now.

Regarding total daily doses, I am about 1/2 bolus and 1/2 basal. My TDD is around 30 units, with my basal giving me 14.5 units and the rest coming from boluses. I think every diabetic's needs are distinctly different, so don't comparison shop too much.

I don't, however, bounce that high after meals. If it's a higher carb meal, I'll cruise right up to 230 mg/dl, but I recover relatively quickly. If I roll with lower carb choices, I usually don't hit 200. People have suggested Symlin but I can't bring myself to invite the nausea. Some people have had good experiences, but I'm trying to remain as medication-free as possible.

Those are my two frustrated cents. Sorry you guys are dealing with this shit at the moment. I can completely empathize.

 
At 9:07 AM, Blogger Penny said...

Carey,

We have had a problem with Riley spiking too high 2 hours after breakfast. But, it's usually only breakfast.

One time we figured out it was the cereal he was eating. After we changed that, he was still doing it a little, so I increased his carb ratio just a bit and that worked.

A rule of thumb that we use that the endo told us is that Riley's sugar should be about 40 points higher than his target sugar about 2 hours after he eats. That's what we aim for, but don't always get.

For example, his target sugar in the morning is 140, so if he's in the 180s I'm good with that.

But, like Kerri said, it's all so individualized. Our endo likes Riley's basal/bolus to be 50/50, but it's usually more like 40/60. But, that is what works for him.

And, then, there's those days when nothing works. (sigh..)

 
At 9:36 AM, Blogger Carey said...

Thank you Shannon, Penny. Jonah and Kerri. I really appreciate your feedback.

Penny - It does help very much to compare notes with you since Riley and Charlie are roughly the same weight and age. Charlie's basal/bolus is more like 30/70 we recently learned. Maybe getting closer to 50/50 is the answer. We'll see.

 
At 10:17 AM, Blogger Wendy Morgan said...

My daughter often has problems within two hours of a meal or snack. It is problematic at school becuase she'll eat breakfast at 7:30 and she takes her sugar at 9:30 for a snack and it is often high--200-350. She is usually fine at lunch, but I hate having to wait until lunch to see if the proxmity to her meal was the issue or an infusion set problem.

Don't worry about the A1C. It isn't a permanent number; changes every single day. As a teenager I had some 11 A1C's and I turned out ok.

You are doing your best and frankly, that is the best anyone can do!

 
At 12:33 PM, Blogger Shannon said...

Brendon's diabetes team told us not to bother testing in between meals because kids tend to stay high until the next meal. Adults on the otherhand work differently.

We only test during mealtimes. If we do test at any other time, it's when he's had a lot of activity or when he comes to us saying he feels low or has a headache (or any other complaint).

Like Penny, we balance his total daily insulin at 50/50 or as close to that as possible....whatever works.

 
At 1:12 PM, Blogger Shannon said...

P.S. Since Brendon's been on the pump (4 yrs and running) his A1C has never gone above 7.7

 
At 1:38 PM, Blogger Carey said...

Thanks Wendy. Thanks Shannon. I really wonder if the 50/50 balance is where we are off the mark. Well, something to be hopeful for.

 
At 5:35 PM, Blogger Libby said...

I'm sorry you are going through all of this right now.

My only adive to you is to check out the forum at www.childrenwithdiabetes.com alot of the parents have children on pumps with alot of great information.

Just start a thread with you concerns. Maybe they will have some helpful tips or advice to point you in a better direction.
I don't know if any of them are doctors, but they have alot of experience.

I hope things get better soon.

 
At 6:45 AM, Blogger LORI said...

I have always had issues with post-breakfast tests. My bg used to spike very high, then by lunchtime it drops to within range... even sometimes too low. I find I need to bolus a bit more aggresively for breakfast, but back off on my basal between 8:00 a.m. and 12:00 p.m.

Anoter thing, a few months ago I started administering my breakfast bolus about 30-45 minutes before I eat. It seems to work for me. When I test 2 hours after breakfast, I'm always comfortably within range. Sometimes I still experience a low by lunch time, but I try to remember to have a balanced snack midmorning (about 15g of carb with a protein without bolusing), and it carries me through to lunch without significantly increasing or decreasing my blood sugar.

 
At 11:13 PM, Blogger Sasha said...

Kerri is right, all people are different and it's better not to compare but if sharing my experience might help you in any way ... I'm not a child anymore but it takes me up to 4-5 hours to go back to the normal range after meals, especially breakfast and dinner, my blood sugars are kind of "V" patterned during the day. And taking more insulin for the meal or taking it earlier doesn't help, I'll just fall low later on. Low-carb meals help me but I don't think it's a solution for a growing child.

Good luck! I know it's very hard but don't get frustrated, you'll win the fight, I'm sure.

 
At 7:49 PM, Blogger Chris said...

What a fucked up disease. We havent even touched on it with emma and it is throwing us everyday. It is hard to fathome emma will live with this.
Fuck.

 
At 8:14 AM, Blogger Michele said...

Our daughter Maeve used to go sky high after breakfast, only to be right on target at lunch. What our CDE suggested was to give her breakfast bolus and then wait 10-15 minutes before she eats, giving the insulin a head start. This works really well for her. The rationale was that she had more growth hormones in her system in the morning which were making her more resistant. We can really see a difference if we rush to time frame in the morning and have her eat too soon.

hope this helps and that things start lookng up for you all.

- Michele

 

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