February 18, 2007

I am all over the place. In any few minutes that I can grab, I am reading someone's archives to learn about their child's diagnosis and their first weeks at home, or I am talking to someone on the phone, or I am reading Understanding Diabetes. I am slowly learning.

But here's some stuff I didn't learn in the book.

Walgreen's? I get why no one likes that place. Prices? Not so low. Pharmacy staff? Not so helpful.

Test strips? They are about a dollar a piece and when you run out two weeks into a script because you have been testing your newly diagnosed daughter a lot because she is up and then down and then back up and you never really know where she's going to be at any given moment? Insurance won't pay for that next box.

I am also learning that there are important things that no one bothered to mention to us before we left the hospital.

Things like lows at night and how we need to check for them.

Things like checking for ketones when O goes high. (After eating too much during the Great Hot Water Heater Escapade of 2007 on Saturday, she was 283. Should I have checked her for ketones?)

Are we checking her too much? Not enough? Too soon after meals?

Why is it so hard to get her numbers up at night despite having cut way back on her dose and shoving her full of food?

I have so much to learn.

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9 Comments:

Anonymous alish said...

and i wish i could help. maybe call kathy tomorrow? (from my epic email) i plan to check on test strips, too. you are doing such an amazing job juggling all that's been thrown at you. breathe, bath, wine. wait, breathe, wine, bath. better. xoxoxox

9:03 PM  
Blogger Nicole P said...

You do have lots to learn. You will keep learning for as long as Olivia has diabetes. That's the truth - take it from me, all these years later. I never feel like I know ENOUGH. But you'll learn the things you need to do and when you get new information, you'll learn to have those "Aha" moments and use the information when you have it - without beating yourself up for not having thought about it or not knowing it sooner.

Did you see a pediatric endocrinologist (children's diabetes doctor) at the hospital? If not, you should maybe considering calling the JDRF or the ADA in your area and find one of their recommended D docs. Also - the doctor should, for now, help you to get more test strips (they have them in their office from drug reps) - how many times a day are you testing? The doctor should give you a prescription ample enough to cover all of those tests - and you should be able to get an override based on that script if the insurance company has limitations.

In the meantime, what kind of meter do you have? I have both extra One touch and Ascensia strips - and I would be willing to send you some to help you along until you can talk with the doc and figure that piece out.

I always test for Ketones over 270. I don't often show them - but when I do, usually lots of water and insulin to get the sugar down zaps them. Again - talk to the doc as soon as you can about these sorts of things - let him/her know you're concerned that you don't have enough information.

Are you writing all of Olivia's numbers down or putting them into some kind of spreadsheet? If you do that, it can be easier to figure out patterns. I would log any activity, food, medication, and bloodsugars for several days, then take a careful look at everything that's going on. For sure, you may not see anything - but you might see something that will help you to figure out frustrating swings.

Did your Doctor tell you about the Honeymoon period? Olivia's body could still be producing small amounts of insulin. If she is, that could account for those lows you mentioned... There are lots of D-blog parents that have experience with Honeymooning - I'm sure they'll be chiming in.

10:57 AM  
Blogger Paige said...

Thanks, Nicole.

We did see a pediatric endocrinologist in the hospital and are scheduled to see him and his team again in two weeks. I have spoken with them several times by phone. We are keeping track of all her numbers, and while it is sometimes hard for me to tell much from it, we have been able to see that she gets low. We have been told to respond by cutting back on her rapid-acting insulin, which we have done. At this point, she is receiving 1/2 unit AM and PM, as well as NPH.

Thanks for your offer on the strips. The endo is indeed going to up our prescription, so I think that we are set. I got all panicky and never even thought to ask them about it.

Thanks, again.

3:52 PM  
Blogger Paige said...

That should be that she gets low mid-morning and evening before bed.

3:53 PM  
Blogger Penny said...

Paige,

When Riley first came home from the hospital his endo told us to check him at 2 AM the first two nights and then we wouldn't have to do it ANYMORE.

What? Are you kidding me? I quickly found out that wasn't going to work. I still get up at least 2 times every night and check Riley's sugars.

It may not be very comforting, but most of what you learn, you're going to learn on your own by trial and error.

This disease is so idividualized. What works for some doesn't work for others.

But, you're a good, concerned mom. You'll figure out what works and what doesn't. And, like Nicole said you'll never feel like you know enough.

Again, email me with any questions, I'll try to answer the best I can or find someone that can answer them for you.

4:16 PM  
Blogger Penny said...

Oh yeah, and ketones, we check if he's over 300 more than once. (also very individulized)For example, if he's over 300 and I give insulin and an hour later he's still elevated, we check.

He usually only show ketones if he has a string of highs. The only time he's had large ketones was when he had an ear infection.

But, again, some people spill ketones very easily and other don't.

4:19 PM  
Blogger Nicole P said...

Paige - I'm sorry the last part of my comment didn't show up - and I didn't realize til I was reading your response.

So:

You are doing a GREAT job and your friend Alish is right - breathe, bath wine... Try to give yourself credit and take a good breath for everything you've learned and done so far! Hang in there.

:)

5:34 PM  
Blogger Val said...

Just a thought on your test strip situation.

I called my new insurance company because they seemed to think testing 4x a day was sufficient, when my dr had written the scrip for 300 strips/month.

I was all primed for this big argument - even had a three day CGMS printout showing that I'm just all over the place all the time and I was going to ask them which 4 times they thought I should check.

Turns out once I was on the phone with a real person, they said, Oh, you have type ONE diabetes? You take insulin? We'll pay for ten a day.

So, it's worth a try. Good luck - I've been dealing with Type 1 in myself, not my kids, so I can only imagine how much more frustrating that can be. You just have to remind yourself you are doing as well as you can with the resources you have - and plenty of people were dx'd back in the days of urine testing and have made out OK.

12:42 PM  
Blogger Paige said...

Thanks, Penny. We are waking testing Olivia at least a couple of times a night, but I wonder if we should do more often. When I don't know what her BG is, I am always wondering.

Thanks, Nicole!

Val, we bought a box of strips out of pocket and then the MD called in a script for 300. Good to know what your co. covers. Haven't had the conversation with ours yet. I was all set to ask you some questions about your CGMS and then I went and read your latest post...now I'm too tired to write anymore. Exhausting!!

3:18 PM  

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