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. 

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. 

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.

The Pink Slide

(Disclaimer: I am not a medical person, I don't work for Omnipod, and this is only what I've observed that helped us. Please consult your own doctor.)

The Omnipod insulin pump deploys the canula for delivering the insulin under the skin by way of a needle that inserts the plastic canula and then retracts, leaving the flexible canula inserted. Very infrequently, the needle will fail to retract. In three years of usage, I think my son had this happen perhaps two or three times. That's over 500 insertions for him, but only a handful of failures.

It is, however, helpful to know when this has happened. The first clue for my son is that it is painful. The needle isn't flexible, so it is felt on movement of that insertion site. Looking in the view window of the pod didn't  help me, as the needle would be inside the canula and not visible. So how to know if this has happened?

We look at the "pink slide". If the needle has inserted the canula and successfully retracted, there will be a pink rectangle at the bottom of the yellow circle on the right.

If the needle has not retracted, it will look like a new, unused pod (below) with the pink rectangle near the top of the yellow circle. Here is an unused pod to demonstrate (I don't have on hand a pod that has malfunctioned.)

The pink slide is the best way to know if the needle retracted or did not deploy the canula at all. Upon deactivating and removing the pod, we would find that in a failed insertion the needle was still inside the canula and sharp to the touch (be careful!). Another way to know that it has deployed is that once you start the insertion process, you'll hear a series of softer clicks and one louder, stronger click from the insertion.

Anytime the needle fails to retract, it is important to report it to Omnipod customer service as the feedback helps improve the product. They should replace the pod for you. A photo of the pink slide is available on Insulet's website also.

For my son, this pump is the only pump as he said "no tubes". Any pump will have a problem now and again, but the extreme benefits for us outweigh the cons.

Again, this is based on our own anecdotal and personal experience. If you have any questions, please contact your doctor or Insulet Omnipod.