Monday, April 14, 2008

Type 1 Awareness Day

Today, April 14th is Type 1 Awareness day. Being so, I encouraged Maddison to finally tell her friends at Girls Scouts about her Diabetes tonight. She began by showing her picture with the puppy in the magazine and explaining how we donated puppies to raise money for a cure. She did really well, but the other girls seemed bored to death and didn't have any questions. I showed them my pump, chatted for a minute and that was it! I am happy that we have her Diabetes out in the open now and Maddison is looking forward to me being able to leave her alone with the group for the hour and a half meet each Monday night. I will give her my cell phone to call me if she is low, and she will call me if they have a snack. She can use her pump herself, so I guess I will have to brave this HUGE step and fight back my own fears to let her take some responsibility. She has the troop leader of course for all verifying of dosing..... and you know I will have her well informed by the time I actually leave Maddison the first time. :)

So my part in raising awareness today is to educate about all the differnt things we must consider when managing Diabetes. It isn't as simple as counting carbs and injecting the right amount of insulin, and most people think that if you have an insulin pump it does all the work for you. The insulin pump is managed and programmed by the user. It does nothing unless you tell it too. It does not check your blood sugar or dose automatically when we eat. How the heck would it know how many carbs I am eating? The main reason a person chooses the pump is becuase (for us)it can dose tiny amounts of insulin (1/10th of a unit) compared to syringes that have a minumum half unit increment. When you have Diabetes you must consider all these factors, every day with every dose........this is probably boring to most of you, but as far as awareness goes....this is what Diabetes really is......

The amount of insulin it takes to lower your blood sugar (How sensitive are you to insulin?)You must know how much 1 unit of insulin will lower your high blood sugar.
My sensitivity is 1:200 during the day. That means 1 unit will drop my blood sugar 200 points on average. But at night my sensitivity is 1:70!!! With a pump you can program an hourly range in which your sensitivity to insulin changes. VERY important becuase sensitivity can change all hours of the day. Most people are more active during the day and obviously not when sleeping, so insulin will effect you differently at different times of day. When children have growth spurts or are sick (especially with ketones) it is common to have to change your sensitivity dramatically.

Carb Ratio-
Maddison's carbohydrate to food ratio is 1:13 in the morning, this means for every 13 carbs she eats she gets 1 unit of insulin. This is programmed into the pump, so if she eats 36c I tell the pump by entering 36c and it will give her 2.77 units etc. You can't dose with this same accuaracy when using syringes. Carb ratios can be different for different times of the day (morning meals usually require much more insulin because the body is resistant to insulin upon waking) Maddison's lunch ratio is 1:26 and then changes to 1:28 for after school snack time, and then again changes to 1:26 for any food consumed after 5pm. It takes ALOT of recording blood sugar results to figure these things out!

Basal dose-
Figuring out your basal rate can be the hardeset by far! A Basal dose of insulin is the "background" insulin that your body needs when you are not even eating. Your body always needs insulin, not just when you eat. It is constantly being given in tiny amounts in a normal healthy pancreas. The insulin pump works the same way. When you don't have a pump like us, you must inject 2 different types of insulin. One for food, and one for your "basal" insulin. On insulin shots the "basal" dose is given in one dose and is expected to slowly dissolve and last 24 hours. It can be really hard to manage, and dissolve unpredictably for many reasons. With an insulin pump we are able to micro manage basal amounts as needed from hour to hour. My example is Maddison. This is what her pump doses each hour, for 24 hours each day..... automatically.... as programmed by me (you know, the one that knows exactly how her body works, LOL)

Midnight thru 1:30am (.05 per hour)
1:30am thru 7:30pm (.10 per hour)
7:30pm thru 11pm (.15 per hour)
11pm thru Midnight (.20 per hour)

Maddison requires much more insulin at night when the body is resting because she is a growing child. All hormones are most active when at rest and your body is rebuilding and repairing, resting for another day. How the Hell do you figure out what rates to program? The best way is to fast with no food to determine if the background "basal" dose is correct and not causing highs or lows of course! What a pain in the a** I tell you! If you have the correct amount of insulin being dosed each hour then your blood sugar should remain within 30 points of where you started testing. You then check your blood sugar every hour to see where a change needs to be made, if any. If your basal amount is incorrect, you will see a rise or drop in blood sugar. It is amazing to check your child in at bedtime with a 140 and then to see a 386 at 3am. That would mean you can change something somewhere to avoid a rise in blood sugar.....but what do you try to adjust first? Sometimes it just happens for no reason. Sometimes it happens one night, not the next, and then reappears out of nowhere for another 2 days! Then guess what!? One night it will be a low.......that is Diabetes. Usually things stay stable when you get the doses set right, but that doesn't always last for long. Your basal requirements are always changing as a child. Right now I haven't made any changes for Maddison in about 3 months. That is the best record so far. This, to me, is why you micro manage with a pump. A pump can change the basal rates hour to hour to avoid (especially nightime) lows and highs, keeping your blood sugar stable. You cant adjust hour to hour without a pump. It is alot of work to get basal's set right. It is alot of finger poking, and alot of figuring out what to change first. It can change week to week, with illness, stress, PMS, growth spurts or who knows what else! And it does change, ALOT.

Target Range-
A target range is programmed in the pump to tell it where you want your blood sugar to be. For Maddison during the day we have it set from 100-130, but at night it changes becuase it would be dangerous if she were to drop suddenly. Her target at night is set for 130-160. If I check her at night and she is too high at 348 I tell the pump she is 348 and it calculates a "correction" according to her programmed sensitivity for that time frame. It will show me that suggested amount and I can approve it or change it. On a good day she comes down perfectly in range, on a "bad" day we correct it several times until it is finally right. On really BAD days due to illness, stress or growing it may not come down at all. Or it may come down too much causing a low. With Diabetes every day is different. Most days can be predictable, but alot of days never make any sense.

The pump also keeps track of how much insulin is active or still working. Maddison's insulin for food works to lower her blood sugar for 3 hours on average. If she is low I can enter that number from her meter into her pump and it will tell me .8 is still active for example. I can then base that on how many carbs she will need to stay in range. If she is high I can enter that number in the pump and it does the math for me to determine how much more insulin she needs to get back into good range.

The pump does not however have any idea that foods like chocolate, ice cream, french fries and pizza are crazy. Foods with alot of fat or protein digest very slowly (but every person with diabetes is different!)So if your insulin is done working in three hours and you still have food digesting there will not be insulin working to help the highs after 3-8 hours later. You can set a "dual wave" bolus, and extend a percentage of your insulin to be given over a specified time. We can give 60% of the dose up front and 40% over say.....2 or 3 hours to avoid the highs later. An amazing feature of the pump! It keeps track of everything I dose, and for sleep deprivation that is a must.

This is my every day in managing Diabetes for 2. Just when I think I need to make changes somewhere, it all settles down. Just when I think a ratio is off, it is actually a basal amount. You only learn by changing something and waiting to see if it works. If it doesn't you try again. Change something else. Change something back. Try different food combinations, wonder if the insulin is bad. Wonder if the pump site is bad. Wonder if there was an air bubble in the tubing. Then you wonder if you forgot to count something, or do you really just suck at carb counting? Being off by even 5 carbs can be HUGE! I am always analyzing the blood sugar situation.

I hope that you actually finished reading to this point. I know it must have been boring for anyone that doesn't have Diabetes. Alot of talk that doesn't make sense I am sure, and you probably really dont care to even hear all of this. But I appreciate the fact that you care enough about Maddison and I to try and understand how complicated Diabetes is, and why I am always seemingly obsessed about talking about our new lives with this screwed up disease. It is right there with me in so many ways. It can be overwhelming at times, and it can be confusing. I hope that you are now aware of what I have to consider every day just to keep my child (and me!) healthy and free of complications in the future. I know I have forgotten to mention so much. The emotional side wasn't even one I was going to mention today. Time for me to get to bed! I had to sit down tonight and do my part to raise awareness, so there ya go!

1 comment:

Anonymous said...

so confusing!