Scary Things – Part 3

Tuesday:

This post has very little to do with blood sugar readings or diabetes.  If you’ve read the two posts prior to this then you know the past few days have been fraught with issues with blood sugar.  If you haven’t, read here and here.  I also have been stressed communicating with Angelina’s teacher, school nurse, and administrators.  I’ve spent a good couple of hours in the past two days reading and writing and exchanging emails to make sure that her diabetes 504 plan is being followed for state testing.

Well, Angelina leaves for the bus around 8am every morning.  As she was walking out the door to go to school I get a text from my husband, “They are laying off about 1/3 of the employees today.”  Now, everyone is afraid of being laid off or losing their job.  For us, this would be absolutely catastrophic.  I am on social security disability and not able to hold a job.  I have not had a job for over 5 years.  On top of that David JUST bought a new car three weeks ago after driving the same car for 9 years.  So, for the first time in about 5 years we just took on a monster of a car payment.  He needed a new car and March marked a record end-of-quarter for his employer.  There were talks of raises this year and congratulations all around.  And, of course, aside from my disability we have a child with a chronic medical condition that even the most basic treatment for is very expensive.

Our health insurance is through my husband’s job.  If he lost his job we would not only lose about 80% of our household income, we would also lose our health insurance, which means we would actually lose about 160% of our “income”. (You can do the math there)  I posted about how much diabetes has cost (before insurance) in the past year since Angelina’s diagnosis (you can find that here).  Simply put, we wouldn’t be able to afford her diabetes without insurance.  Or we would have to default on the auto loan we just took out, which would be the more likely scenario.  Even then, I’m not sure how we would do it.  Fortunately, like many people with D that are fortunate to have good insurance, we have a stockpile of diabetes supplies.  But even that would probably only last us a month to 6 weeks past the expected refill time.  And that’s only because I just picked up her insulin from the pharmacy yesterday (All $880 of it, before insurance).

Four of my husband’s friends from work were let go.  A lot more people than that were let go, but these 4 are people that we associate with socially and who have been to our home and/or we have been to theirs.  It wasn’t until 9:30am that I finally got the text that said his job was safe.  I am incredibly relieved for us, because job loss means so much more than just a loss of income.  In very real terms, job loss for him could very quickly mean having to choose between need diabetes supplies and insulin for my daughter to stay alive or food and housing.  Without our insurance, even if my husband got another job right away, there is a very real possibility of still being forced to make that choice.  I can’t wait until the United States finally stops treating health coverage as a luxury item and starts providing it for everyone, regardless of income, and certainly not tied to a person’s employer.

Scary Things – Part 2

Monday:

Monday morning came way too early after not getting to bed until 1:30 am.  It was also the first day back at school for Angelina after two weeks of Spring Break.  I happened to actually wake up at 6:30 when David was getting ready to leave for work.  I knew there was no way I would wake up again to my alarm at 7 or 7:30 (I have two set to make sure I wake up on normal mornings) if I went back to sleep so I got up.  Blood sugar was perfectly in range.  Got her breakfast, bolus, off to school.

Went about my day, heard nothing from the school. Great!  Around 3:45 I see the bus pulled up outside our house (normally the bus turns at our corner and stops diagonal from the house on the opposite side of the intersection.)  I see Angelina coming off the bus at our gate so I went outside to investigate.  D-Mom senses were tingling again because this is just ODD.  Angelina walks up to the door and I said “Why were you dropped off at our door?”  Her response, “Substitute bus driver.”  Okay, big sigh of relief from me, nothing is wrong.  And then, “It’s a good thing because my blood sugar is low!”  WHAT?!?!  As part of her diabetes accommodations at school she has to check in with the nurse near the end of the day to make sure her BG is in a good place to ride the bus because she is the last stop and has an hour-long bus ride.  So, I said, “Okay, let’s get you some juice.”  We go in the house and she said that she alerted low on the bus. “Mom, like, it just said “LOW” but there was no number.”  If any of you use a Dexcom you know what this mean, if not – when the Dexcom just says “LOW” and doesn’t show a number it means that it’s outside of it’s readable range of 40-400, so a “LOW” reading means she was below 40, according to the Dexcom.

Screenshot 2014-04-22 13.03.53

Fortunately she carries a spare meter in her backpack, even though technically she isn’t supposed to.  She said her meter said 62, which is still low, but certainly not as scary as a below 40 reading.  The only problem is that she didn’t have anything in her backpack to treat the low.  I thought she had a tube of glucose tabs, but she didn’t (She does now, as of yesterday!).  She said she had a package of beef jerky in her backpack though and ate that to at least stop her blood sugar from dropping more.  According to the Dexcom she was low from 3pm until she got home 45 minutes later.  The bus leaves the school at 2:55pm and they had a substitute bus driver who knows NOTHING about her diabetes, obviously.  So she ate her beef jerky and waited to get home, fortunately the beef jerky did seem to keep her BG from plummeting further and juice worked quickly just as it should, almost too well.

We had meatloaf and brussels sprouts for dinner which was only about 25 carbs.  I was falling asleep by 8pm so passed the Dexcom off to my husband and went to bed.  I woke up around 10pm when he came to bed and put the Dexcom receiver on my bedside table.  Bg was stable and hanging around 150, which was fine for going to bed.  We all went to sleep.

Then I was woken up around 2am with Dexcom screaming that she was high, over 250.  Bg steadily went up starting just after she went to bed.  So, even though meatloaf was low carb and I used extra lean beef we still saw a fat spike, apparently.  Checked her BG, gave correction and went back to sleep.  Got woken up again 2 hours later with BG still over 250.  I have a 2 hour snooze set for her high alarm since that is the active insulin time for her and correction isn’t administered more often than every 2 hours anyway.  So I got up at 4am, confirmed BG with a fingerstick and gave more correction.  Got woken up again at 6:30 when David was getting ready for work to see that BG stayed around 250 the entire night despite a few units of correction over that span of time.  It did not alert high again though because it was reading about 245 and her high alert is set at 250.  Got up and did fingerstick again, calibrated CGM, did MORE correction and started my day by emailing her teacher and nurse to make sure that the accommodations for state testing were going to be followed since they are starting testing today.

I got Angelina up around 7:30, pre-bolused for breakfast, especially since she was already high, and sent her off to school.  Whew!

Scary Things – Part 1

I’m not sure what is going on these past few days but I am feeling a bit off balance.

Sunday:

On Sunday, Angelina ate some robin eggs for breakfast and then we decided to get buffet brunch around 11am.  Dexcom was reading just under 400 BG in short order.  So, of course I pushed some correction and set a temp basal to bring her down.  She decided she was going to wash the car so she donned her swim suit and a bucket full of soapy water and went to work.  We decided to bolus for her basal rate for an hour since I really didn’t want her going without an hours worth of insulin when she was already so high.  But I also didn’t want her insulin pump getting wet either.  Of course as soon as she went outside her Dexcom went out of range, but I wasn’t worried.  She came in about an hour later looking for a towel and decided to take a warm bath with her bathing suit still on.  I finally looked at her Dexcom and told her she needed to get hooked back up to her pump.  Dexcom was reading around 150.  As always, it took her a while to decide to finally get out of the tub.

David and I were playing Rock Band and she came and sat on the couch by him (I was across the room) and said she wanted to play.  I looked over at her and told her she needed to put her pump back on, but could she please check her BG to see how things were.  As she was opening her meter case I could see her hands shaking from across the room.  Dexcom said 114.  Meter said 49.  So I said “Check again.  Your fingers are waterlogged maybe they’re just too wet and the drop was diluted.”  Second test: 45.

Screenshot 2014-04-22 12.14.48

Gave juice, calibrated Dexcom.  It was then reading about 55 but quickly started going back up. An hour later I got the alert that she had double up arrows and BG was high, 256.  What.the.eff.  Pump was back on at this point. Hm.  Decided to give it a minute for arrows to level out, and check a few minutes later and reading was slightly lower and arrows had leveled out so no correction.

Everyone went back about what they were doing. Angelina decided to play Rock Band on her own after David and I quit.  I was on the computer and decided it was time to start dinner and realized the house was quiet.  Dexcom showed her BG at 110, but I thought maybe she had gone back outside so I asked David to find her and check on her while I got dinner started.  He comes into the kitchen and says “She’s in her bed, sleeping.”  Which made my d-mama senses tingle adn I said “Okay, we need to check her BG”.  Took meter into her room and checked: 45.  Seriously?!?!  Calibrated Dexcom.  Rechecked: 34!  Meanwhile David had gone to grab a juice box.  When I shook her to have her drink at first she didn’t respond and she hadn’t woken up when I checked her BG so I felt panic rising up in me.  Fortunately then she opened her eyes and took the juice from me.  We calibrated the Dexcom (again!) and it wouldn’t accept the 34 BG reading and just came up with and a blood drop.  I tried entering in the 34 again but it wouldn’t accept it. (It didn’t dawn on me until later that it wouldn’t take it because the Dexcom only reads between 40 and 400 and the 34 was too low).

She finished her juice and I said I would be back in a few minutes to check her again.  I went about trying to get dinner ready and realized I was missing an ingredient so I sent David to the store.  After he left Angelina made her way into the living room and was sort of drooped in the recliner.  I asked her how she was feeling and she said “I just feel so weak.  It was really hard to walk in here from my room.”   At that point the Dexcom started reading again and said she was in the 60′s.  So, I did another fingerstick and BG was around 110.  I went back to making dinner and let her recuperate on the couch.

The dexcom seemed to be okay after that but I was a bit wary to trust it.  She took a shower just before bed and she said “Mom, can we just change my sensor?  It hurts.”  So we started over.  Called Dexcom and a replacement should be arriving sometime today.  However, that meant we did a sensor change at almost 10pm and her blood sugars were wonky all day.  I finally ended up getting to bed around 1:30 am.

Insulin isn’t a cure… it’s also not a cause.

This was shared in Type 1 Group that I participate in. This plaque/exhibit is located at the National Museum of American History, which is part of the Smithsonian Institute in Washington, D.C. It just goes to show that even in the scholarly community there is a lot of ignorance and misinformation about type 1 diabetes. For those of you reading this who have T1 or are raising/have raised a child with T1 you can understand why this is upsetting.
1962719_10152769915681777_186074962_nThe plaque reads:

GROWING DEMAND…

Before the discovery of insulin in the early 1920′s, people who developed diabetes usually died within a few years. Although insulin therapy was not a cure, its use, along with dietary control and constant monitoring, enabled diabetics to live long and active lives.

The success of insulin therapy created a growing population dependent on the drug. Over the past 20 years, unhealthy changes in lifestyle and eating habits have contributed to a dramatic increase in the number of Americans with diabetes. Together, these factors have generated an ever-expanding demand for insulin.

For those of you who don’t see a problem with what is written: That is the problem.  There are many awareness campaigns out there about Type 2 diabetes and how getting active and eating a healthy diet can help prevent developing type 2, but there is little differentiation, even in the medical community about the Type 1 and how it differs from Type 2.  Those who are uneducated on the subject (and even some of those who should be educated, but aren’t) seem to lump the two together not realizing that they are in effect blaming children (or parents) for their child getting Type 1, when in fact there are no prescribed risk factors, no prevention techniques, and often no real indication of there even being a risk.  Only about 10% of people who are diagnosed with Type 1 have any family history, which means that for 90% of those diagnosed, they often have no idea they were even at risk until they were diagnosed.

Type 1 and Type 2 are vastly different conditions, caused by different things, and the treatment is also managed very differently. The similarity is that without treatment they both cause high blood sugar, which causes excessive thirst and frequent urination, among other symptoms. The name diabetes mellitus comes from Greek and Latin origins with the “Diabetes” meaning “pass through” or “siphon” while “Mellitus” means “honey” or “sugar” and refers to the urine passing through and being sweet. In ancient cultures “sweet urine” was first discovered by the fact that people with this condition had urine that attracted ants and had sweet odor and taste.
Anyway, Type 1 diabetes, which is an autoimmune condition, is when the insulin producing cells in the pancreas are attacked and killed by the immune system causing the person to no longer produce insulin, requiring the use of insulin from an external source, today that is primarily synthetic human insulin. The exact cause of the autoimmune reaction that triggers the cells in the pancreas is still a bit of a mystery in the medical community. But, the fact of the matter is that without supplemental insulin people with type 1 diabetes will die. No amount of exercise and healthy eating will cure them, or even treat them, without also having injected insulin. There currently is no prevention or cure for type 1 diabetes and the most effective treatment is injection insulin.

Type 2 diabetes, on the other hand, is when insulin is still produced by the pancreas but the body does not use it efficiently because their cells are insulin resistant. A low carb diet and exercise both help to increase insulin sensitivity, as well as certain oral medications. Diet and exercise can be used to maintain relatively “normal” blood sugar levels in someone with type 2. In some cases, people with type 2 may progress to a point that their pancreas is working extra hard to provide enough insulin to meet their increased needs due to insulin resistance and some of their insulin producing cells may be overworked and stop producing, requiring the person to also use supplemental insulin, but again this is in conjunction with lifestyle changes and oral medications to increase their response to the insulin they make as well as insulin they may receive from an outside source. The cause of Type 2 diabetes often has to do with a genetic pre-disposition and can also be further contributed to by poor nutritional choices and little exercise. In a lot of cases type 2 can be prevented, or managed with a proper diet and moderate exercise and insulin is rarely, if ever, a first line treatment for Type 2 diabetes.

Hang Low-ver

Thanks to Diabetic Danica for the term.

Angelina got sick a week ago.  Nothing major just a cold.  Yeah, right.  Every illness seems to be major when you have T1D.  She woke up last Thursday complaining of congestion and had a very low grade fever, but it was only a half day and she had her endocrinologist appointment anyway so I kept her home from school.  She just kind of hung out with me in my bedroom all day as we are having workers replace all our pipes and I have been sort of barricaded off in my bedroom while they are in and out of the house. Blood sugars were okay up until it was time to go to the endo and then, of course, she was high.

The endo appointment went long because I was going off about what has been going on with her school and that subject is something that just sets me off lately.  On the bright side, endo has agreed to attend a meeting at her school so we can get everything squared away and the endo can write orders that meet everyone’s needs, and the school nurses needs for everything to be phrased just so.

A1c result was lower than I was expecting since we have seen quite a few overnight highs lately – down to 7.2 from a 7.8 in November.  Turns out the overnight highs that I was attributing to growth spurt/hormones/delayed highs from dinner was really that her midnight basal rate was MUCH lower than her evening basal rate, and I never really noticed since her settings report (and trend lines) are all linear starting at midnight and running to midnight without looping back around.  So, I didn’t notice that midnight setting was so much very lower than the evening setting before it.  Dr also tweaked her carb ratios a bit and jumped her daytime ISF from 100 down to 75 (!).  I can’t really tell how well any of it is working yet though because with illness (even minor ones) comes the need for much more insulin and/or lots of highs, and then possibly lows and yo-yoing blood sugars from trying to figure out just how much extra insulin she is going to need at any given point during the day or night while she is sick.

The last time she had a cold she was still in honeymoon and we saw her insulin need increase by about 50%.  She was not on a CGM at the time so I didn’t feel really comfortable being more aggressive than that as I was afraid of her going low, especially at night.  Since she is on the Dexcom now (which is amazing, btw!) I can see what her blood sugar is doing every 5 minutes so I felt free to increase her insulin to my heart’s content and was able to get her into her target range for a good portion of the day.  I started her out with the 50% increase, but she was still up in the 300′s, so we went to 75% increase- still high.   100% increase (so twice as much insulin as usual) and still not able to get her below approximately 225.  Since the temp basal program on her pump only goes up to a maximum of 100% increase (or 200% of normal) I had to program in a whole new basal program for her.  To be safe, I programmed it at about a 50% increase and then did an additional temp basal on top of that.  About 70% extra at home, and a 20-30% increase when she finally went back to school on Tuesday.

Well, the problem with this is that a temp basal can only be set for a maximum of 24 hours and it doesn’t give an alert or anything when it’s finished.  On Tuesday night I forgot to reset it for the higher amount before bed so I got woken up at midnight to a “HIGH 300 mg/dL” on the Dexcom.  It was at that point that I realized I had forgotten to reset the temp basal.  So I did correction, set the 70% increased temp basal and went back to bed and figured the Dexcom would wake me up if there was a problem.

No alarms during the night, and at one point I woke up and her blood sugar was hovering around 175 and I though “Great! She came down nicely.  The correction should have finished by now so we should see an in range number first thing in the morning.”  And then around 6:45am, shortly after David had left for work I woke up out of a sound sleep and grabbed the Dexcom.  It said she was 87!  Now, 87 is a little below range for her, but still a perfectly acceptable number.  It was just a little surprising to see her blood sugar had continued it’s downward trend so many hours later still.

I got up to go check her blood sugar and meter says 60.  Okay, well, that’s a bit unexpected.  I try waking her up and she just kind of pulls the blanket tighter.  So I grab juice since it’s the easiest thing to try to get a sleeping child to swallow.  It took a little coaxing but she finally drinks the entire juice box and we settle in to wait.  Keeping an eye on the Dexcom I’m starting to get a little concerned because it’s going down instead of up.  I have seen the Dexcom have some trouble coming up from low readings to I am just hoping that it’s that.  But, after the 20 minute wait I check her BG again and it is now down to 53, 1 point off of the 54 that Dex is reporting.

20140213-101935.jpgWell, it seems the juice didn’t work so well…  She’s still sleeping but maybe I can get her to chew a few glucose tabs.  I grabbed another juice box, just in case, but tried to wake her again.  I ask her if she will chew a glucose tab and she nods so I put it in her mouth and she makes an initial chewing motion, but then nothing.  When I tell her to chew she just looks kind of bewildered so I say “Okay, let’s try more juice.” and have her spit the unchewed glucose tab into my hand.  Waiting game is on again and I start to see the Dexcom finally creeping up…72, 83, 96. Yay! It seems we’re in the clear.  Finger stick reads 124, and Dexcom is only a few points behind.

Of course now it is actually time to get up for school.  We go through the usual “I don’t want to wear that.  Why aren’t XYZ pants clean? (maybe because mom isn’t a mind reader and didn’t know you wanted to wear them today?)  I don’t know what I want for breakfast”, etc.  And then she says “Why do I feel so terrible?  I have a headache and I feel sick to my stomach.”  I said, “Well, you were low.  You just had 2 juice boxes and you probably need to eat something.”   She just blankly stares at me and says “I was low?”  She then notices the glucose tab, in pieces, sitting on the entertainment center and says “What’s that?”  To which I reply “That’s the glucose tab you wouldn’t chew.”  She had absolutely no recollection of being low, or drinking juice, or not chewing the glucose tab, even though this had all happened just 30 minutes before.

She says “I feel terrible.  Can I have ibuprofen?  Is this what a hangover feels like?”  And, thanks to Diabetic Danica, I replied “You’ve got a hang low-ver”.

I don’t know what it feels like to experience hypoglycemia in the way Angelina does.  I’ve had a handful of hangovers in my life (usually from wine), and I can’t help but feel incredibly sad that at 10 years old my daughter knows what that feels like, and not from alcohol.

Her blood sugar levels were amazingly in range the rest of the day, except for another brief excursion into the upper 60′s after lunch, which then resolved itself (she didn’t even notice it until I said something after reviewing her Dexcom when she got home from school).  So, for now, I have discontinued the extra temp basal, but she is still on the basal profile that is giving her 50% more insulin than usual.

Today she is on a field trip.  I am hoping that everything goes smoothly and she has a great time.  Next week: school meeting with the principal, district nurse and the endo.

The Dexcom Saga Has Ended. (Hopefully)

We received Angelina’s Dexcom via FedEx on January 21st. Hooray!!!  Went through the quick start guide and watched the tutorial while putting in on her first sensor and everything went really well.  It took a bit more force to push the transmitter on with the little clip thingy than I was expecting, which means that I also pinched her skin harder than I should have and she yelled at me.  However, the process was pretty simple and not so painful (aided greatly by EMLA cream).  Dexcom was up and running 2 hours later and we started the beautiful, beautiful data stream.  Of course, diabetes decided to play dirty that night and she was reading about 300 at midnight.  Fingerstick says she’s 260ish, I think?   Okay, it’s only been 6 hours since it started, we’ll chalk this up to first 24 hours adjustment period, still within 20% at those high of numbers.

And then Dexcom continued to alarm high every 2 hours throughout the night.  We used the enlites back in November and one of Ang’s complains was way too many alarms (especially false ones) so I set the Dexcom up with very conservative alarms – 75 for lows and 300 for highs with no fall or rise rate alarms.  I also have her high snooze set for 120 minutes since her active insulin time is 2 hours.  So, every 2 hours that night I got woken up by Dexcom, got up, did fingerstick, gave corrections.  This may sound like a bad thing.  But it was WONDERFUL!!  Not so much that she had a continually stubborn high overnight, but that the Dexcom actually woke me up, and not only that but the furthest it was off after that midnight reading (which I re-calibrated for) was 9 points!   At blood sugar levels of 300+ being 9 points off at most is AMAZING.  Because, seriously, even with her meter (which has a 15% accuracy rating) when her blood sugar is that high, 2 consecutive fingersticks in the same time period may be off by more than 9 points!  I was amazed!

Our experience continued like that and I cannot sing the praises of the Dexcom highly enough.   And then, on day 7 I get a phone call from Angelina at school.  “Mom, something is wrong with the Dexcom.  It says ‘call technical support’ and has an error code.”  At this point I can hear the thing alarming (really loudly!) so I asked her if she could go into the menu to shut down the receiver.  But, apparently when there’s an error you can’t do ANYTHING, so I had to go to school.

I called Dexcom and was directed to reset the receiver.  It vibrated and then continued with the error screen.  At which point I was informed they would overnight us a new receiver.  A week after we got the first one.  Seriously.  I sadly took the receiver home with me and felt a sense of panic that Angelina wouldn’t have it the rest of the day.  Especially since the day before she had a low of 65 at 1:45 in the afternoon and only knew about it because of the Dexcom.  If you’ve read my previous post about what’s happening at school, then you would know that the nurse has decided that Angelina no longer needs an end of the day blood sugar check since “she’s usually high at that time” and those checks will no longer be done after Jan 31st.

So, that was Tuesday.  I took the receiver home and about an hour later decided to try to see if I could reset it again.  It worked that time, so I called Dexcom and was told they were still going to send a replacement since it shouldn’t be doing that and the fact that it wouldn’t reset earlier was concerning.  When Ang got home from school I went ahead and reconnected her and readings seemed to be pretty accurate.  Of course, she was high because at the end of the day check she was 130 (which is pretty great for her!) and the health tech decided that was too low for her to go on the bus with.  Rather than calling me, she went ahead and gave her a snack and a juice.  She was 220 when we got Dexcom back online.

We went out for dinner and she had a cheeseburger and french fries from Red Robin.  I didn’t think much of it until a couple hours later when her BG started climbing.  I did some correction around bedtime and dexcom showed that she was starting to come down a little.  I went to bed and figured it would wake me up if she went higher.  Well… I woke up a few times during the night and peeked at the Dexcom, which showed she had drifted down and was pretty close to target so I just let it be.

Wednesday morning I got up and Dexcom said she was 169.  Fingerstick said 250.  If trend graph was to be trusted that meant that she had been around 75 pts higher the entire night and actually had gone over 300 at some point, but dexcom didn’t register it.  I decided to pull the sensor and send her to school without it.  Fedex delivered new receiver around lunch time!  I then got a phone call at the end of the day that Angelina’s blood sugar was 104.  I said that was fine, but Angelina insisted that she felt like she was dropping so she had PB crackers (with insulin) and got on the bus.  Of course she was pushing 200 again when she got home.

Then we got her new sensor in and new receiver all hooked up and life went back to our new normal.  This new sensor doesn’t seem to be quite as accurate as the last one, but it could just be new sensor jitters and it hasn’t learned her yet.  Looking forward to smooth sailing from here on out. (At least until we have to deal with Edgepark to reorder sensors)