Friday, December 01, 2006

5 things I've learned

I have learned a lot of things about diabetes over the past 14 months. The vast majority of things I have learned have come by trial and error. Another large resource for me has come from the diabetic community (aka The OC). Hardly any of my diabetes knowledge has actually come from the medical community. Weird, huh? One would think that most knowledge comes from your healthcare provider. But, not with this disease. With diabetes, you sort of learn as you go. You can't really explain how to live with this disease. You just have to learn it all on your own.

I'm going to list five things that I was told/taught in the beginning of this disease that didn't really hold true for Riley. They may work for others, but not Riley. And, I know that Drs. have to be somewhat general in their teaching since everyone is very different. That's why this disease is so hard to deal with.

#1) "Treat all lows with 15 g of carbohydrates. Test again in 15 minutes. If you are not back into your target range, treat with another 15 g carbohydrates. Once you are back into your target, eat a snack with some protein to keep you sugar from dropping again."

Hmmm, I actually followed this rule in the beginning. Do you know how many highs we had from overtreating lows? I don't even want to think about it. Now, Riley gets fruit gushers. They seem to do the perfect job of giving him that boost of sugar he needs without shooting him up too much. I count each gusher as 2 g carbs. Riley gets gushers according to what his sugar is, how much insulin is on board, and how long it will be before he eats a snack or meal.

For example, a low of 60 with no insulin on board, may get 2-3 gushers and a peanut butter cracker (3g) if he's not going to eat anytime soon. If he's about to eat, then he just gets the gushers while I'm fixing his snack or meal. See the difference there? Just about any endo. will tell you to treat every low with 15 grams of carbs. But, Riley's lows are usually treated with 4-8g. He's 4. He weighs 35 pounds. He doesn't need all those carbs to bring his sugar up. It took a lot of trial and error to figure out his gusher to sugar ratio.

Another problem with this "rule" is the "test in 15 minutes and if you're not in your target range, treat again". This has not been very helpful either. Again, in the beginning, I followed this rule. I didn't know any better. I'd wait for what seemed like an eternity. (When your child's sugar is 40, 15 minutes seems more like 15 hours.) And, if Riley was not in the range that his endo had given me (150-225) , I would give him 15 more grams of carbs.

Now, I test again in 15 minutes or sometimes 20 if he's not too low. I've found that waiting that extra 5 minutes helps to get a better picture of how his sugar is coming up. Besides, most times after 5 minutes or so, I can see the change in Riley's demeanor and I know he's coming up. I've learned that Riley does not have to be in range after 15 minutes, his blood sugar just needs to be up from what it was. For example, if I test and he's 50, I'll treat with carbs and wait 15 minutes. If he's 80, then I know he's coming up and the gushers are working. Of course, I'll check again later to make sure he hasn't dropped again, but I don't treat him again because he's not exactly in range. If I treat again, we'll usually get a sugar in the 200-300 range a couple of hours later.

I've also learned that he needs more or less carbs to treat a low depending on the time of day. For example, he needs less carbs in the middle of the night for a low. And, it may take a little longer for the low to come up in the middle of the night.

#2) "You should have diabetes for a least a year before even thinking about starting on a pump."

This "rule" is pushed by just about every endo I have come into contact with. I pushed for Riley to have a pump from the very beginning. I knew it wasn't feasible to get a pump within a few weeks of diagnosis, but I was not about to wait a whole year before even discussing the possibility of the pump.

Riley's first endo. was a nice enough man, and I think he's very knowledgeable about Type 1 D, being that he has it himself, but, he was very adamant that no one should be on the pump while they are still honeymooning. What?!?

It's easier to adjust insulin or stop insulin all together with the pump. While you're honeymooning, is exactly when this is the most beneficial. Riley was on Lantus/NovoLog in the beginning. And, once that Lantus is in your system, it's there for a good 24-36 hours. So, if your pancreas decides to start working and kicking out it's own insulin, then you have a day of stuffing carbs into your kid. With the pump, you can decrease his basal or stop his insulin delivery all together. And, when their pancreas decides to stop working again, and trust me, it will, you can go back to how you were doing things to begin with.

The second argument that I often heard about why no one should be on a pump the first year, is "you need to get used to giving injections before you go to the pump". While I agree with that statement, I do not agree that it takes a year to master the art of giving an injection. Riley started on the pump 5 months after he was diagnosed. I filled up two gallon jugs with syringes during that time. Yeah, I got plenty of practice drawing up insulin and giving shots to my 3 year old.

#3) "Young children should not be placed on pump therapy."

Riley was 3 when he started pumping. I met a lot of resistance from not only the medical community, but the diabetic community as well with this little "rule".

The first endo's reasoning was that Riley was too young to effectively help with the pump or understand the pump. Again...What?!?

Riley was too young to effectively help with or understand his injections too. But, that didn't keep me from using MDI to keep him alive. "Oh, he doesn't understand how to draw up insulin or inject himself. Maybe we should try an alternative." Wait, there isn't an alternative. He was three, he didn't need to understand how the pump works, I did.

That was what I heard from the medical community. The diabetic community had another reason for saying Riley shouldn't have a pump. Not everyone, mind you, but I did meet a lot of resistance from parents whose kids were not on the pump, and to my astonishment, parents whose kids were on the pump, but still thought mine shouldn't be.

I heard a lot of "He's too young. What if he doesn't like the pump? It should really be his decision." I have two problems with this.

For one, if he didn't like the pump, well, then, we would have switched back to MDI. I wouldn't have wanted to, but Riley is the one who has to wear the thing 24/7. If he was just adamant that he didn't like it, then I would have respected his wishes and waited until he was ready. That would have been very expensive to buy a pump and not use it. But, it was an option. It's not like once I started him on the pump, we could never go back.

Secondly, while using a pump should ultimately be Riley's decision, he was 3 at the time. A three year old does not have the cognitive ability to make such decisions. Exactly why you should wait until he's older, some would say. Well, I don't agree. The age at which a child is able to make decisions like this varies from child to child. While some may be able to reach this decision on their own at 8 or 9. Some may not really be able to until they are 11-12.

As parents it's our job to make these decisions for them until they can make them on their own. For example, I still pick out Riley's clothes for him. He is just not capable of picking out an outfit to wear out in public. He may get it right some of the time. But, most of the time, he'd end up in Spongebob pajama pants and his blue "Baseball is Life" T-shirt. And, he'd wear flip flops or sandals in the dead of winter.

See where I'm going with this? If picking out your kids clothes so that they are presentable is a task we parents should do, then how much more important is it that we make wise decisions about their healthcare for them until they can do it on their own? I'm not saying that the pump is the only wise decision. While, I love the pump, I do realize it's not for everyone, whether they are children or adults.

But, as parents of toddlers and young children, we shouldn't be treated by others like we're making the wrong decision for our children. These people that were telling me I should wait because Riley was too young, didn't even know Riley. Most of us our doing the best we can to make the best decisions we can for our children. We all get it wrong occasionally, but that goes back to the whole trial and error thing.

#4) "Small children should not have an A1C below 7.5"

While I think this is a good rule for most children, especially the very young ones who are hypoglycemic unaware, it is not a hard and fast rule for all kids. I would love to see Riley's A1C below 7.5. The key is to achieve that level without a lot of lows.

Riley's last A1C was 7.8. That is in the range of 7.5-8.0 that is recommended, but it's not good enough for me. A child Riley's age without D has an A1C in the 5% range. While that is not a possibility for Riley, I still think we can do better than 7.8.

My next goal is to have him at 7.5. Then, we'll try to decrease it from there.

I can just see the red flags going up in some of your heads. You think I'm entering the danger zone. While 7.5 is my goal, I would never put Riley in harm's way to achieve it. If he starts to have a run of lows, I will decrease his basals accordingly. So far, that hasn't happened. Not even close. He's had a random low here and there.

At his last appointment, we got the OK from the endo to try for a lower A1C. She said that while 7.8 is in range, we can do better. She's right. She went on to tell us why she thinks Riley can have a lower range than some others. Basically it boils down to the fact that we test Riley often, thus we would catch the lows. And, we know if he starts running a pattern of lows, we need to decrease his basals.

Since his last appointment at the end of September, I've been slowly increasing his basals. This increase hasn't caused any unusual lows. What it has done has decreased his average sugar to about 170. I'm happy with that.

#5) "You do not need to test your child's sugar in the middle of the night."

When Riley first came home from the hospital, his endo said to test him at 2 AM for a couple of night and then we wouldn't need to get up in the middle of the night anymore after that.

Who was he kidding? Me, sleep through the night? Ha. What a laugh.

When Riley was on Lantus, he would drop A LOT during the night. We had many, many low, low sugars during the night.

Now that's he's on the pump, I still get up and test. For one reason, because I need to know how his sugars are doing to make sure his basals are OK. Yes, I could go by his morning sugar and know that if it's too high, then his basals aren't right. But, I'm not willing to let him run high all night just to get a few z's. And another reason why I test at least twice in the middle of the night is because if his pump malfunctions or his set goes bad, then he could go high very quickly. Now, if Riley does go high in the middle of the night, he usually wakes up having to go the rest room. Again, I could use that as my cue. But, I'd much rather catch the high before it gets too high. It doesn't always work. Sometimes he spikes up to 300 or goes down to 56 (happened at 3AM about 3 weeks ago) even with me checking a couple of times a night.

I'm just much more comfortable sacrificing my sleep than taking chances with his sugars.

All of these things I've just listed have been learned from personal experience. They are not advice to anyone. Just things I've leaned that work well for Riley. I was not trying to imply that every child should be on a pump. And, I'm not saying that if you don't get up and check your child's sugar in the middle of the night, you are a bad parent. Your child's sugars may be just fine every night. But,Riley's sugars have always fluctuated a little more at night.

In other news, Riley's sugars finally started going down around bedtime Tuesday night. He woke to a sugar of 118 Wednesday morning and no ketones in sight. His sniffles are gone, but his sugars haven't quite caught up yet. He's still running a little higher than I like, but a least now, he comes down with a correction and he doesn't need the temp. basals anymore.







12 comments:

Anonymous said...

This is all such good information. Thank you! As I look forward to what is to come, I guess what holds true for me (each diabetes plan is individual) will hold true for my daughter. And I think I am gonna test her bs tonight....

Anonymous said...

I don't use the rule of 15, and I started pumping months after diagnosis. What can I sa? I bend the rules.

Anonymous said...

Penny-

This was an excellent post!

We threw out that "rule of 15" early on as well-- it always led to ridiculous highs!

Also, overnight checks are just part of our routine, because Joseph never wakes on his own when he's high or low.

Now, if we didn't check his bgs, and he were to experience a sustained high overnight, he'd wet the bed (this still sometimes happens if we have difficulty bringing down a high).

And if he were to go low... well, I really don't like to think about that one.

We just do the checks.

julia said...

The 15/15 rule has always worked well with O, but diabetes is definitely a YMMV thing.

And I have definitely gotten more help from the OC and the CWD list than I've had from a doctor. Even at Joslin, where they're great and helpful and knowledgeable, it's been easier to brainstorm with other parents. They're the only ones who can say "Well, I tried thus and so and had good results."

Anonymous said...

Bravo!

Anonymous said...

Penny,
This was a very technical and informative post. I loved it.
The fact that our clinic has more or less left almost everything up to us has made us feel very much empowered and in control for the most part. Beside the fact that her Diabetes will control us at times.
By leaving the majority of the decision making to us after she came home from the hospital in September shortly after DX has allowed us to develop our own feel. I am sure you will agree that feel has as much to do with this as the numbers you see on your BG monitor.
I will not comment on the pump issue because that is pretty low on our "to do" list if you will. For now anyway.
___sidebar__ i saw my first person with a pump the other day at work....I felt like going to him and hugging him for some reason and asking him a about his diabetes....that would have been just weird, a UPS guy hugging a teenager in the middle of the mall.___
Anyhow ...great post
Take care
Chris

Scott K. Johnson said...

What a great post Penny!

This one will go down as a very useful reference tool for parents for a long time I think.

And for the record, if I could follow that whole 15/15 thing, I'd probably be in much better control.

Just as you said, those 15 minutes are an ETERNITY! Just can't do it. I usually end up eating way too much and bolusing to cover. Crazy huh - bolusing for a low...

Take care!

Shannon said...

Somebody come and arrest me because I've broken every one of those rules....although I haven't had much luck in breaking the A1C rule...but I'm still working on it!

Great post as usual.

Shannon said...

Somebody come and arrest me because I've broken every one of those rules....although I haven't had much luck in breaking the A1C rule...but I'm still working on it!

Great post as usual.

karondaray said...

I guess i am one of "thoose" parents too. My kids were on NPH and Novolog for 3 years and 2 years, thats what they started us on, and it worked for 3 years. Then it didn't and i had to find another way to control this. I asked my kids" Do you want lantus or the pump, thats your choices?" .We had to change. My duaghter(age 9) jumped at the pump, my son(age 13) hemmed and hawwed and then chose the pump. Guess what , he loves its....blow me away. Guess what else, my duaghter doesn't....she wants only 2 shots a day. NO WAY , i couldn't do it, the numnbers would just stink. I told her once she turns 18 and make her own medical choices then she can do what she wants to. But until that point i am mom , and i am the one worrying and staying up late and i am going to make it easier on me. Sorry if that sounds mean or selfish. But i am doing this becuase it is the best option available. So i am one of "thoose" moms.

Anonymous said...

Penny:

I couldn't agree more. Great post here. Without sounding too arrogant, we often feel that we have a better idea of how to handle certain situations than Charlie's doctors. It's a shame, but we've often said, "thank god we didn't take doctor's advice." They don't live with our children 24/7. They really don't know.
Charlie's doctors tend to be more concerned about us not getting sleep. I know they mean well, but they just don't get it. Why we test so much. Why we're up all night.

Anonymous said...

Not only are some endos (NOT ours!) against night time testing, but a lot of parents of children with diabetes seem to be judgmental and negative about our night time testing our nine year old. And on so-called CWD support hotlines. I have heard everything from "our endo says by testing at night, you are stunting her growth" (she's quite tall), to "if her mother could get her basals correct, maybe you wouldn't be up all night." These people supposedly KNOW basals in children can be adjusted weekly and bolus insulin sometimes more often that that. And there is very recent evidence to the contrary suggesting that night time testing is indeed necessary. I am not critical of those who, for whatever reason, simply do not have the energy to interrupt sleep and test. They could have very demanding jobs or young children at home and they need to be very alert and no chance to cat-nap. But night time testing should be the standard for E. based on a year-and-a-half's worth of very variable night time blood sugars. As far as A1cs go, latest standards say to get them as low as you can without your child suffering dangerous lows. She has lows, but they are in the mid-60s and 70s so we will not abandon our common sense and jack her targets and A1c numbers up so she can have an A1c of 7.8 plus. Regarding overtreating lows, same thing. One gram raises her blood sugar by five points. We use that formula. Since the parent or caretaker knows their own child best, others should not be critical of how the parent takes care of their child. Because 90% out of 100, the parent who lives with a child 24/7 will be correct.