Twenty-first Century Diabetes

Suppose you wanted to drive across the country and I offered to give you a car for the trip. There will be no charge for the use of the car or gas, but there is a hitch: the gar has no gauges of any kind. You will not know how fast you are going, how far you have driven, or how much gas is left. (No problem: every once in a while you can pull over, put a stick in the gas tank and do a calculation as to how much gas you have left and how far that will take you.) 

The car is known to overheat now and again, but you can just pull over and let it cool down then continue on your journey. Sometimes, when it is very cold outside, the car can stall and just quit running. There is no on-board thermometer of the outside temperature. Also, you cannot bring your cell phone and no one is going to be monitoring your progress. It is suggested that you pack food and water for the trip, in case you break down along side of the road since you will be passing through some regions with low population. Oh, and if the car gets too hot, it explodes and you die. If you keep this car very long, you will likely have to replace some of the major parts.

Sounds fun, right? Now, suppose I make you a second offer. For a month fee of $75, you can have a car with gauges, a cell phone, GPS, and an on-board monitoring system so family can track your whereabouts. You will have ample information about how far you've progressed on the trip, will be able to make adequate decisions about fuel, food, and lodging. This car is also prone to difficulties in extreme weather, but with your phone, you'll be able to plan the trip to avoid heat and cold. This car will last for ages beyond the car with no gauges and require less replacement of parts.

If you are fortunate enough to afford the $75 a month fee, it is a no-brainer. Yet, patients will all types of diabetes are expected to navigate through life without any gauges of any kind. They are expected do a periodic finger stick and from that, make all other decisions, just reacting to what is happening instead of planning ahead. Insurance companies are denying continuous glucose monitors (CGM) such as the Dexcom G5, because they are costly short term. I'm sure you can deduce the long terms costs and effects of life without it. 

Many patients are told they cannot have a CGM until they've "proven" themselves to understand diabetes without it. This is like being told we may not use a calculator until we prove we know how to use a slide rule (if you even know what that is). How are we to understand what is happening, how insulin works, without seeing a graph of it in action? When will we discharge patients from diagnosis like the advanced civilization we are with the best medicine has to offer right now?

For the record, we got the Dexcom CGM three months after diagnosis, but not because it was recommended or even encouraged, but because we asked for and pushed for it.

End of rant.

Weathering the Storm

It couldn't have happened at a worse time. Of course, at a better time I would have no story to tell and it would just have been diabetes rearing its ugly head. Nearing the end of our vacation, the Omnipod PDM (Personal Diabetes Manager) began blinking and beeping a swan song. The PDM is the remote control to pods that run William's insulin pump, a pod stuck to his leg.

No worries, I thought, they can overnight a new PDM. The pod would continue to deliver insulin for his background or basal insulin. We could use injections (I brought a few needles) to bolus for food. This a really good plan if my advice to NEVER suspend basal insulin was heeded. ALWAYS use a temporary suspension which then will turn back on after a given time. (Note: advice to William, follow your own doctor for medical advice.)

Low BG and out on the beach, William had suspended insulin delivery so we had no way to turn the basal back on. And, of course..... I missed the cutoff on an overnight shipment. The PDM would arrive after we left on Saturday (so I had it shipped to home). This meant Thursday through Sunday afternoon, Monday really for the transition on MDI (multiple daily injections, meaning many shots). It just got better and better.

I had brought Lantus, a long acting basal insulin, but would need more needles. I have a stockpile at home but was sure they weren't going to be needed. A quick trip to Walgreens, I could buy all I wanted. But how to transition from pump to MDI and back? After talking both to Scott Benner at Arden's Day and later an endo on call, we worked out a plan. But I'll tell you, we have a new appreciation for our pump. William lamented over his mistake in suspending and loss of his pump, but I assured him it was actually a great thing to have happened. He needed to know how to survive if he suddenly lost his pump. I was here to help, but won't always be. This was a learning opportunity.

Within several hours of no insulin, a person with Type 1 diabetes is in an emergency situation. Traveling with T1D means planning, multiple layers of preparedness, always prepared like a scout. No pump? I've read more than one story of someone that forgot their insulin, had no needles, broke their one bottle, or were not within five hours of a 24 hours pharmacy.

I learned that when traveling and pumping, I will make sure to know about pharmacies in the area. Bring lots of extra needles even if I think we won't need them. Bring basal insulin or at the very least, a prescription for it, knowing that a 24 hour pharmacy is within one hour of stay. Make sure that the very last thing we do is check that insulin is packed and ready. And perhaps know how to go to MDI and back, or have the phone number of endo on call. 

We are happily pumping again. We currently project his A1C (blood glucose levels over last three months) to be a 5.4 (normal is 4.5 to 5.5  for someone without diabetes), but of course, he needs to keep me on my toes, so he is changing his eating and exercise patterns with the beginning of the school year.

This blog is not intended as medical advice but is only our own experiences. Please contact your medical team before making medical decisions. 

Until the Cure

"Why Planes Crash", a documentary, makes the assertion that there often isn't one mistake that causes the crash. Many times there are a series of events that aren't caught, aren't stopped, that result in the catastrophe. The mechanic, the pilot, the plane, may be worthy and experienced but small mistakes on the part of even one can result in failure.

This blog post is starting as a big gray nasty cloud because I'm going to tell you the dark side of Type 1 Diabetes. BUT, it is meant for support for "newbies" if you will stick with me. William (my T1D) and I are very good "pilots" of his T1D. Excellent, in fact. Over the past year and a half, he has maintained an A1C of 5.9 (with one 6.3) in a body undergoing rapid change and puberty. This is no easy feat. I am bragging a bit to emphasize that we know what we are doing most days. Most days, I get posts like this:

Two nights ago was a different story. Just before bedtime, his BG was falling gently from 150, his insulin pod expired at the same time his Dexcom needed to be restarted. Sigh. I suggested that he replace the two week old sensor, but I always leave that decision to him. (It turns out I should have pushed to replace it.) I set my phone alarm for two hours to test his BG for restarting Dexcom. A weekend night, he was going to stay up late and play video games anyway so I wasn't worried about a low (mistake #2).

Two hours later, I found he'd gone to bed and his finger sticks showed he was low 50s probably due to exercise earlier in the day. I turned off all insulin and over the next hours, tried vainly to raise his BG. No amount of juice or chocolate milk, our usual treatments, would raise him. Finally, around 3 a.m., hormones started helping and I saw a rise. The Dexcom CGM cut in and out, too old to be reliable. Yet, at BG 115, past experience showed that he would likely stay steady.

At 4:30 a.m., I woke to find him over 200. I corrected but should have checked the pod (#3). Tired, I reasoned that it was due to a two hour suspended insulin and also pod change. By 6:30, nothing had changed, still over 200. Then, exhausted, I found myself waking at 9:30 (#4) and oh, no! He was over 300 and had 2.2 ketones, a level we've never seen. 3.0 means go to the hospital. The Dexcom had cut out altogether and no alarms warned me. We quickly corrected with a needle and changed the pod, which had a bent cannula. Although inserted the night before, the fact that it wasn't working was masked because for the first four hours he was going low.

I made a series of mistakes, including not better coordinating when his devices should be restarted. Some of it is due to constantly trying to figure out his changing diet and exercise. Some of it, I should have known better. So why am I flaying myself here and telling you all of this?

Each challenge we have seems to have something to teach us. I was raised to think that hard study in school prevents failure. Type 1 has carried the message for me that sometimes, no matter how hard you study and work, no matter what you do, mistakes can be made and circumstances can line up to near disaster - and we have to forgive ourselves for them. Each "crash", each hard night is another chance to learn. Even veterans of this disease make mistakes or have hard nights. Many posts on T1D forums are from moms that label themselves "failures" or "mommy fail", feeling guilty for missing something or making the wrong decision. Shit will happen. It will happen again. But, you, you will learn and grow and be able to shake it off, stand up and move forward. You are not a failure! You are a warrior in an unfair battle and there are many of us beside you - until there is a cure.

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.

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.

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.

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.