Tuesday, May 02, 2006

Basketball and an endo appointment

I know I've neglected this blog lately. Things have been so busy, it doesn't feel like I have time to breathe, let alone blog. Things have been busy in a good way though.

We went off for the weekend again for more basketball. It was the state AAU tournaments. It was double elimination. They won their first game and then lost the next two games. So, they didn't place high enough to go to the nationals, which will be in Florida.

Friday we stopped on the way to the games for an endo. appointment. Riley had been pumping exactly 8 weeks. He had gained a pound which I was very happy with. She also checked his A1C, which had gone up, of course. It's to be expected when you first start the pump because you usually have some high numbers in the beginning while trying to find your right basals. 8 weeks ago his A1C was 7.6, it is now 8.1. Although I hate that it went up, I'm trying to keep it in perspective. 8.1 is still a good A1C for his age. I've seen the range for his age as 75.-8.5, but I'd really like to keep it under 8. We will be going back the end of June and I'm hoping it will be better then. We're not having the highs like we were one time. Now they happen only occasionally, not every day like in the beginning of pumping.

Dr. M came in and the first thing she did was ask Riley how he liked the pump. She asked him if he was eating everything he wanted to and if he had any questions for her. She looked at his sites we've been using for his sets and said they looked great. Then, she went on the ask us some questions. Some of the questions she asked where: "Have you stopped doing things that you would be doing if Riley didn't have diabetes?" (No) "Are you letting him eat like he wants to?" (Yes). The one question that stuck in my mind and I have thought of quite a bit since the appointment was "Is diabetes still in the top 3 of you lists of problems?" I had to be honest and say yes. She assured me that one day she would ask that question and I would say no. I have to admit I have a hard time believing her. She then went on to add that given that Riley was so young, it may take a little longer before it wasn't so high on the list, but one day it wouldn't be. Still, I'm not convinced.

She then looked at his sugars. She looked at how I'd been adjusting basals and said, "You have a good eye for this. It looks like all you need is for me to bless you and send you on your way." That made me feel good. I felt like I had a good idea of what to do, but then I was thinking maybe there was something I could do differently. The main two problems we've been having are his 2 hour post parandal (after eating) breakfast sugar. It's been too high. One might think a carb coverage adjustment is in order, but his breakfast coverage is already 1 per 30g. This is the highest of all his carb coverage. Upping it to 1 per 25g just seemed like too much to me. His morning basal is also the highest of all day at .150. The second problem ties in with and probably causes the first one. Riley's 2 and 3 AM sugars are usually a little too high, usually in the lower 200s. But, by 5-6 AM, his sugars are low enough that we have to suspend his pump sometimes. His basals from 12 AM to 3 AM are .10. They drop all the way down to 0.05 from 3 AM-8AM but still he drops too low. Dr. M's thinking was just like mine. She said that 1 per 25g is too much carb coverage and the problem with his morning sugars going up probably stem from his basal being so low earlier in the morning. She said what we need to do is get his 5-8 AM sugars up so we can increase the basals going into breakfast. But, how do you do that? I told her the thing that bothers me most right now is having to basically run his sugar up at bedtime so his sugar won't go too low later in the morning. If I don't run his sugars up to the 200s, he will defiantly go too low later and need his pump suspended, which again, affects his post-breakfast sugar. Her thinking is that he is just so active. He really is never still. She thinks his activity affects his sugars in the early morning hours. Her recommendation was to try increasing the amount of fat he gets at his bedtime snack. She's hoping that will help keep those sugars up a little longer thus allowing us to increase his basals a little. Now, Riley's nighttime snack is cheese puffs. It makes me cringe to even write it. But, he loves it and it has 8g of fat per serving but no trans fats. At first, I thought it may be working. His sugars were 134 and 121 pre-breakfast. But, this morning, he was 90. That's a great sugar, but too low to increase the basals. His after breakfast sugars have been running in the 250s range. His 8-12 basals have also been increased to .175, but I haven't seen where it's made much of a difference.

The rest of his sugars are doing pretty good. We hadn't had any major lows lately. That was until Sunday morning.

We were near a place with a huge mall. We decided to spend some time there before heading home. Riley's pre-breakfast sugar was 134. We then went to the mall. We had only been there about an hour. He hadn't been walking much. We were carrying him most of the time. I decided to stop in the middle of the mall and check his sugar. He acted OK. He said he felt OK. I just wanted to check to be sure he was OK. He was 54. Not OK. He got to eat Spongebob fruit snacks, much to his delight, and they did the trick. They brought his sugar up nicely and he didn't rebound like he usually does. We then carried him down to the food court and he had an early lunch.

It's things like that which make me hate this disease. What if I hadn't decided to stop and check his sugar? How low would he have gone? It scares me and infuriates me all at the same time.

I've been doing pretty well lately. I haven't cried in a while. But, I've gotten good at pushing bad thoughts to the back of my mind. Every once in a while, I'll think about when Riley is going to have to be responsible for the stupid disease. I mean, right now, I do all the work. I like it that way. He doesn't have to worry about it or think about it. It won't always be that way. One day all of my worries will be his worries and that saddens me. But, as soon as I have those thoughts, I push them to the back of my mind. There is no use worrying about it now. But, I think that's starting to catch up with me. (I'm crying right now while I'm writing this.) It's not like I've been in denial. I've just been in survival mode, I think. Just pushing through. Just doing what has to be done. But, eventually, the breakdown comes. It always does.

6 comments:

Scott K. Johnson said...

Great to hear from you Penny.

As far as blogging goes - there is no obligation or quota for posting. You do it when you can, and more importantly when you can AND feel like it. We're not holding you to any deadlines or anything, and we'll be hear reading whenever you get time to write.

Sounds like things went pretty good at the endo's office - and I got a good grin at the image of cheese puffs for bedtime snack, and the yellow residue they always leave all over your fingers!

I think you are doing a great job with Riley - and it's natural for you, as his mother and caregiver, to worry about him doing all this on his own. I think you are helping him learn balance, and to do the best you can to keep things pretty good, but without limiting life for it. That balance will be important for him as he grows up.

Diabetes is not something that can be perfectly managed. You will have ups and downs, always. Work to be Ok with that, and know that you are doing the best you can.

Wishing you & your family all the best.

Anonymous said...

I would ask your Endo about the use of temp basals for a few hours at night so you don't have to run him so high. A modest minus 10% basal for an hour or two or three will correct his high BS, yet leave the basals high enough so he doesn't go low. Or you could do a temp minus 10% just in time to adjust his early morning sugars. Endo would have to figure out the percentages and when to do this, of course, just using 10 percent as an example. If E. is 90 at any time during the night, I will do a minus ten percent temp basal to make sure she doesn't drop further. She is much more predictable than the babies and toddlers, though. Consistent blood sugar testing is key, I feel, every three and-a-half to four hours. Until they have a continuous blood glucose monitor that they can and will wear, that is really my only clue. She has been 40 with this mode of testing. However, she has never been 20, like I have read on some posts. As tiring as it is, I will never give up the 12 am and 2:30 am testing. I've been doing it for almost a year now and nothing in her BS patterns have indicated that it would be a safe and advisable thing to stop night time testing. Both endos have said we could stop if we wanted to. We want to, but it is not safe, based on our observations. Hang in there, things are going to be much easier for these kids in just a few years time. Continuous Blood Glucose Monitoring is here; it IS working, despite the nay-sayers. The only drawbacks are making these devices more comfortable to wear so children will wear them and getting insurance coverage. The pump companies want to sell CBGM to kids, they will fix these problems. We will have to put pressure on the insurance companies. This is just the beginning. By the time your son is a teen-ager, they may have an external artificial pancreas. As for not "thinking about diabetes as one of the first three priorities in your life"! Obviously, endo does not have a child with diabetes! This condition is not about just controlling blood sugars, it has possible long-term complications. It is the number one priority, in my book, until there is a cure. Daily diabetes management, on the other hand, should become easier with time.

bingsy said...

I like the new colors for your blog. Your doctor is right. You have a good instinct with this. Your instinct was to check his sugars at the mall after all. You can't be perfect all the time, but you tend to play it safe, right? I think that Riley will gradually be able to take over a lot of that responsibility as time goes. That will be a huge relief to you. If you think of it. He is going to be so good at knowing himself because he had to start with the whole process early (unfortunately).

Lyrehca said...

Hi,

So interesting that your doctor asked you if Riley was eating the way he wanted to. This is SUCH a change from when I was diagnosed as a kid in the late 70s and living through school in the 1980s. Back then, it was all about eating food exchanges and sticking to a diet and taking one or two shots a day. And early on, it was about peeing into a cup and doing a chemistry experiment to see how your sugar levels were.

It may not sound comforting, but truly, things are so much better for diabetics these days than they ever were before. Penny, your son will be able to handle himself when the time comes. Things truly get easier with time and medical advances. Best of luck.

Carol G. said...

I don't know about the day coming when diabetes isn't on your top 3 worry list. I mean...would you really want 3 WORSE things to worry about? ;-)

I wanted to add that we also have the most problem with Willam's after breakfast blood sugar running high. One thing that has made a big difference for him is that we give him his breakfast insulin and then WAIT - usually about 15 mins if he wakes up on target at 150. If he wakes up over 200 we often have to wait 30 mins or more. A few times he has woke up at 300 and we've had to wait almost an hour! That is even after giving a correction AND the breakfast bolus!

Of course you have to test a lot to make sure he isn't going low. We've done it enough that now we know how William reacts to the insulin.

If we just gave him insulin and let him eat breakfast he'd shoot up into the 300's and hang there - like you said the carb:insulin ratio is fine. I can't bolus more or he'd go too low for lunch. It just seems like we have to give that breakfast insulin a head start. We aren't suspending or running low basals before wake-up either. Another option is something called a "super-bolus" - John Walsh had the idea. You can read about it here: http://www.diabetesnet.com/diabetes_technology/super_bolus.php?PHPSESSID=7ce42496460a...

The concept is that you give an hour or two of basal insulin as bolus and then suspend for that next hour or two. This gives them a bigger dose of insulin up front to combat those breakfast foods. We've had some success on William with this.

But the thing that works best for us is to make sure that William is going down before starting breakfast.

VAS said...

HI I'VE BEEN READING YOUR BLOG FOR A LONG TIME NOW, & I'VE JUST DECIDED TO WRITE, I'M A 24 YEAR OLD MARRIED MOM WHO'S SON WAS DIAGNOSED RECENTLY WITH "D" MY SON IS ONLY TWO, HE WAS ADMITTED ONE MONTH AFTER HIS SECOND BIRTHDAY (LOOKING BACK AT PHOTOS FROM THAT DAY I REALIZE HOW CAREFREE WE ONCE WERE....) HE WAS ADMITTED WITH SUGAR LEVELS OVER 1100, SO SAID THE BLOOD TEST! & THE NURSES SWARMING ALL AROUND US, AT THE TIME I HAD NO IDEA WHAT THAT MEANT BUT KNOWING WHAT I KNOW NOW IT SCARES THE HECT OUT OF ME... ITS HARD AND TOUGH BUT WE ARE GETTING THROUGH IT! READING YOUR BLOG SOMETIMES I CRY RIGHT ALONG WITH YOU, THANKS FOR SHARING....
VAS