Tuesday, March 28, 2017

The Importance of Exercise

Lots of changes happen in a 15 year old and managing T1D becomes a little trickier as hormones kick in insulin resistance and the brain is developing, changing, and sometimes also offering a bit of resistance. I'm analyzing data today. At the beginning of March, son made commitment to himself to get into better shape, begin working out more and eating better. Most non-T1D parents would cheer and ask what's my problem? Isn't this what we all want? Children that exercise instead of being a desk jockey?

When my non-D daughters were growing up, I never worried if they were getting enough carbs or calories. I fed them. The end. I like to cook, and I cook good food, from scratch. I try to stay away from processed foods though not a purist. But never did I worry about stunting their growth potential or have a doctor monitoring our carbs for optimum brain development.How would you like that, being scrutinized every three months to see if you were a good parent by feeding just the right amounts and kinds of foods?

I've been a bit worried that he was not getting enough carbs, but the endo approved eating lower carb (150/day) and he's getting 143. Looking back over 6 months of data, carb consumption hasn't really changed. He is watching/lowering calories right now (intends to increase later for weight lifting) but what he has changed is the type of carbs he eats - only basics: meat, veg, fruit, nut, fats, protein shakes, brown rice and quinoa, etc. Cut all white potatoes, chips, white rice, bread, except for occasional treat.

We've been really struggling as his insulin dosages have changed dramatically as he began working out 1 - 2 hours a day. Daily changes have become necessary and night lows happening more frequently as I struggle to keep up with basal changes. Some nights it was hours to bring him up. But, versus average of last 6 mos, he's reduced his basal 28% and overall insulin usage is down 42.6%, using only 58.9 units a day on average. A good number of his carbs are being eaten "free" because of timing of food versus exercise. His average BG by Dexcom says 111, but two things - we've had too many lows (moderate risk - we're working on this hard - just the change has been sudden) and we've had some dex problems (it says he's 65 but he's actually 80) Because he likes to be in the 80s or even 70s, a 10 or 20% off makes him look low.

Previously, he's been somewhat sedentary - "computer jockey" - though he might go to TKD once or twice a week. We had good A1Cs - (6.1, 5.9, 5.9, 6.3) but used much more insulin to keep it there. I can tell you I've been a bit on edge as he has started doing this because learning to prevent night lows and wondering if he's eating enough. So, I've spent hours this morning looking at data, and I think his carbs are good. It's the exercise and maybe also the different choice of carbs. He's also lost a few pounds which makes him happy as he was a little overweight. Happy for him. I'm very tired.

Disclaimer: this only relates our own journey. I am not a medical professional and this is not intended as medical or any other kind of advice. Please consult your doctor before making any changes to your diet, exercise or treatment program.

Saturday, March 25, 2017

Our Experience with Dex G5

We ~usually~ can get our Dexcom G5 continuous glucose monitor (CGM) to be pretty accurate to the point we use it to make daily decisions. We have had times when it isn't. Here are some of my observations on how we work toward more accuracy and these are only based on our experiences. I wanted to keep notes on what I am learning about Dex as I go along. I'll try to add to and refine this list, so if you have anything to add, please comment below. Note: it is not medical advice, just our experiences and notes.

  • Readings are less accurate the first 24 hours. More finger sticks are needed that first 24 hour period. After, it seems to get more and more accurate. 
  • Accuracy for us seems to depend on standard deviation. If we are experiencing a lot of highs followed by lows (high SD), it seems less accurate. It also seems to wear out the sensor faster.
  • We make sure it's well adhered. We've had times where the filament was half out.
  • The transmitter, even a new one, might not be working well, have to call Dexcom to determine this, and has happened to us once (gave error code) but is rare for us.
  • If near end of battery life, we have found that sometimes, even though we've not gotten the error code that the transmitter needs to be replaced, it needs to be replaced. The battery might be low enough to not give reliable readings.
  • Calibration: we try to calibrate the requested two times a day with finger sticks. We only calibrate when in range even if it is asking for a reading.  We wait until we have a steady arrow in range to calibrate.
  • We wash his hands if the meter and Dex are off by more than 25 mg/dL. It may be that the meter is wrong because of dirty hands or contamination. If you have a control solution, check meter calibration periodically or test against the lab value at doctor appointment.
  • Placement: We have found that legs are more accurate for him than other places (although he refuses to try the abdomen). We try to find the spot that is most accurate for him.
  • Compression lows: if he rolls on the transmitter during sleep, a compression low occurs. We then get a false reading telling us he is low and sometimes, dropping. It takes our Dex a while to recover from this. If it is a great difference between the actual and compression reading, Dex may even go offline with ??? because it knows that something is wrong and will not give a reading until it figures out where he actually is. 
  • Certain drugs, like Tylenol or acetaminophen can affect the readings.
  • We experience it being less accurate during rapid changes in blood glucose. If he has a rapidly rising or rapidly falling BG, I am less likely to trust it. It takes a while to turn a ship around.
  • I always require a finger stick if the Dex reading is very high or very low before treating.
  • If I think a sensor isn't working well, I'll pull it. Dexcom will replace any sensor that didn't last or work for 7 days.
  • Static electricity can be a problem for us, especially in low humidity winter. He likes to wear nylon basketball shorts which exacerbate the problem. We've tried to fight this by using more fabric softener and cotton shorts. 
  • We used to use Opsite Flexfix tape when the adhesive started pulling up. It works okay but can look rather nasty if we use the sensor more than one week. He now prefers Grif Grips. We usually wait until the second week to put the Grif Grip on. 
  • We put Skin Tac on first before insertion. This helps keep it on longer.
  • Dexcom sensor are only approved for use for one week. I am not telling you to use them more than one week. I will tell you that we often get more than one week from our sensors and in our experience, the second week is often just when the sensor is working very well. (Not always, but sometimes.) To do this, we just restart the sensor when it tells us to insert a new one. Note: I am not recommending this - only telling you we do it.
  • In order to get a better A1C, we've set the high alert lower than what we were recommended. Right now, my setting is at 140 mg/dL so that I know he is rising before he is already high.
  • The accuracy is affected by dehydration. 
  • My son seems to think the latest and greatest iPhones give the best connection to the transmitter. I think any iPhone will do. The data is unclear for this bullet point.
This is NOT meant as medical advice. I am not a medical professional and these are just my notes based on my experiences with my son and for myself. Please consult your own medical team before making medical decisions. If using the Dexcom G5 sensor, please follow the manufacturer's instructions and instruction by your medical professional team.

Friday, March 24, 2017

Seeing Red

Red light bulb. Costs $3 at Walmart and works in an ordinary lamp. With a red light bulb, you can turn on the lamp and see very well in the dark without waking the sleeping bear (aka teenage son).Prior to discovering this wonderful thing, testing blood sugar in the dark was either a frustrating balancing act with the flashlight on my iPhone or spelunking lights attached to my forehead shooting out blinding white beams.

Someone mentioned the red light bulb on a diabetes forum and it has been one of my favorite things I've learned to make all this a bit easier. I've not posted much on this tab because, frankly, diabetes is life and is Lifetime Learning. I want to use this tab, however, to post some things that are specific to diabetes management that have helped me or that I want to remember. If it helps someone in the process, that's icing on the cake.

Wednesday, January 18, 2017

Parental Access

With dread, I learned our health insurance was changing. Over the past years, I'd gotten to know all the rules and the mechanics of our provider and for the most part, it was working like a well oiled machine. It has taken the better part of this month and many phone calls to get the right prescriptions sent for the right item, to get some pre-authorized, and to verify purchase and payment. 

Yesterday, I hit an unexpected snag. The representative from the new company asked to speak to my son, age 14 years. I asked why? It seems that as a parent of a teen, I have no right to manage or access his account unless he gives me permission. Luckily, we homeschool, so he was present but if he'd been away at a school, I would have had to call back for the man was insistent that I could not talk about William's account without his permission. 

Would I be allow to PAY for William's account without permission? But, of course! Snarkily, I told the rep good luck getting payment since William was now responsible for his own account. In all the previous years with the other company, not once was I asked if William was present and allowed me (his mother!) to manage his account.

I shared this outlandish situation on a Facebook forum for T1D moms, and was told that one member had to have their toddler give permission and the kid couldn't even talk! In general, the rule is for sexually mature kids, which evidently means about 13 years, so that the kid has access to doctors and care for birth control, etc without parental involvement. If a kid, however, uses health insurance for that purpose, the parent will see the claim, just not the reason for the claim. You pay with no information. Parent then goes to the child, which defeats the purpose of anonymity. 

While I understand the idea behind the law, here's the thing. He is 14 years old and has all the forgetfulness of a teen. There is no way I would turn over ordering medical supplies to him. He has no way to pay for those items. He would not order them on time or even have any knowledge right now about how to do so. So to say that you can lock out a parent that has full responsibility for ordering and payment is absurd. 

There is a way around this: I have set it up so that my husband and I have full access to both each other's and my son's accounts. It is a ridiculous step because, even though my son gave assent and knows I'm doing it, access could have been granted online without his knowledge if I posed as him. 

So, even if your child is little, you might want to check that you have full access to all medical records and all online ordering information before you actually need to. Don't assume because the child is a minor that you will be able to govern their account. 

Thursday, January 12, 2017

The Cost of a Life

A great anger fills me right now as the Republicans tear apart the ACA without a solid plan for replacing it. There is a projection that some of the repeal will include removing provisions for pre-existing conditions, Medicare, and covering adult children to the age of twenty-six. The very image of McConnell shames me.

For now, we, our family will be okay. My husband, a great provider, works for a good company. Each year, we set aside $3500 which we will lay out in the first month of the year for diabetes medications and supplies. After the out of pocket is reached, much will be covered, but there are many other costs not billable to insurance.

But I worry, so many people aren't so fortunate. Where will they get $3500? How will they keep their children well and frankly, alive? Even with the "down payment", many health insurance companies do not cover at the same rates.

What will William do when he becomes an adult and goes to get insurance and no one will cover him? How will he survive? He won't even have the grace period until he is twenty-six, but we will have to face this in three years.

Here's a breakdown of just the basics (and there are many other incidental things we use and not covered) for you:

Per day costs with insurance negotiated rates:
  • Humalog insulin: $24.26
  • Test strips: $17.53
  • Pump supplies: $28.00
  • CGM supplies: $40.78
Total is $110.57 per day or $40,358 per year. Obviously, without good insurance, this would be a great burden. Those with lower paying jobs generally have poorer insurance options as well. Medicaid and Medicare will also likely be slashed. So, what are they to do? 

So many things sadden me about the direction of our country. This lack of foresight about taking care of those in need is one of the greatest. 

Saturday, January 7, 2017

Looking Back

I found a draft I never published on my Lifetime Learning blog. It belongs over here on this blog about T1D. It's still true, though it was written last June. I guess I was feeling a bit sassy that day. Here it is:

My engineering degree taught me that there was a balance around systems. You could calculate what went in, determine what occurred in process, and measure what came out. This could all be mathematically solved so that algorithms could make predictions. This is pure bullshit when it comes to the human body and diabetes. See, the thing is, you never know exactly what is going on inside any given human body.

Two nights ago, William's BG was 150 mg/dL at 3:30 a.m. I chose to do half of the suggested correction because he had been somewhat active on a hot day. He woke up in the 80s. Perfect.
The next night, he was again 150 mg/dL at 3:30 a.m. and I did half a correction because of a similar day, and he woke up in the 200s. (And, yes, I should have caught it with the Dexcom CGM, but I didn't. We'd turned off the high alarms because...well because we were somewhere where it was annoying. Sue me.) 

Same input, same process, different output. Was he growing? Perhaps, just maybe, it was the two hamburgers and fat that he had right before bed at midnight? (I'd already gone to bed and missed knowing this.) Perhaps he was growing. Perhaps it was a full moon. Who knows.

Flying Blind

Basketball season started this morning. Almost immediately, we were flying "blind". Concrete gym walls and nylon gym shorts conspire together to block any transmission of blood glucose levels via the Dexcom continuous glucose monitor. He was 86 with 5 units on insulin on board when the practice started.

Past experience with basketball taught me that it can, if he is under enough pressure or adrenaline, raise his BG, so we decided to go "old school" and go by how he felt. Right as practice ended, he was 75 steady. A success.

Murphy was rather startled by the sound of many bouncing basketballs. She decided to climb under my chair and go to sleep.