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)

Let’s Pile On Some More Frustrations

I think I’ve posted before about my experiences with Angelina’s school.  They agreed fairly reasonably to the 504 Plan that I wrote with only a few minor changes.  However, they have been totally nit-picky about the doctor’s orders and what to do about situations that aren’t specifically written into the plan.  The doctor came up with the solution, which was to write into the orders “Please call mother if any unusual circumstances or questions. she is authorized by me to verbally override these written instructions when special unforeseen circumstances arise”  Well, we have had some “special unforeseen circumstances” arise, which involved a particularly stubborn high that lasted around 24 hours starting Monday night into Tuesday afternoon.  We did a site change Tuesday morning before school and did correction, but numbers remained high and rather than pick her up from school I told her over the phone to do a temp basal.  We had run a temp basal for a while the night before with some success, but as soon as we turned it off she went right back up into the 300′s, which is also where she spent most of the morning on Tuesday.

We had a meeting scheduled this morning  (as requested by me back in December before winter break) and in attendance was the health tech, the district nurse, the district nurse supervisor, the teacher, the assistant principal, me and Angelina.  During the course of the meeting the district nurse supervisor essentially told me that they are not allowed to take orders from parents, only the dr, and if it’s not written in the dr’s orders they can’t do it.  They also denied Angelina the option of checking her blood sugar in the classroom, even though in the dr’s orders it says she is capable of independent management of her care except for calculating her insulin dose, and even that is just with supervision (she basically needs someone to double check her math and log how much insulin she’s giving herself).  Which, mind you, isn’t even really necessary because her pump does all the calculations for her and the tech essentially just writes it down, it’s more just so she has to go the office at least once a day to check in.

So, I told them (again) that I would like to see her being more independent as I think that it will solve some of the issues they are having with her being not so nice when she has to come into the office.  They refuse to budge on this issue and instead have decided that her afternoon check (before her hour long bus ride on a bus where the driver doesn’t know what to look for or what to do) isn’t necessary, so that will cut down on their involvement.   The nurse supervisor’s reasoning?  Their other diabetic students don’t check in the afternoon before getting on the bus.  And since apparently they can’t take directions from me on what to do in situations that aren’t clearly outlined in the dr’s orders they are also no longer going to call me unless her blood sugar is below 70 or over 300.

They also will no longer agree to do correction insulin outside of lunch time, even though that was another thing I fought with them about at the beginning of the year and had the dr write into the orders.  However, the nurse supervisor took the dr’s wording “Insulin for correction OR as determined and given by parent: Humalog (correction factor is 125)”  to mean that the “and given by parent” means that I have to physically give the correction, not that I give the DIRECTIONS for the correction, which is what it was actually meant to say as discussed with her dr when I had her write it into the orders.  So then the nurse supervisor says… wait for it “We don’t give extra correction with our other diabetic students.  Why do you want her getting extra correction in the afternoon anyway?”  I dunno… maybe because if her blood sugar is high it shouldn’t be?  And it’s not going to go down on it’s own.  The orders do say not to give more often than every 2 hours, which is not even the issue, and again, she’s on a pump which automatically calculates whether correction is needed based on active insulin and blood sugar levels.  Because the nurse supervisor’s next comment was “The doctor didn’t even give us a sliding scale for correction anyway.  She has the correction factor here but not at what level to give correction at.”  Except on the next page of the orders it gave the sliding scale and it started at 150.  And again… pump calculates everything. And those rates, ratios, factors change in the pump.  I’m not going to have the dr write new orders all the time because a dosage rate changed when it doesn’t really make a difference as far as the school goes.

And… I have been considering homeschooling Angelina.  I joined a local homeschool group back in November and we have been attending weekly park days with them to get to know some people and get input from others who are already homeschooling.  I’m not really ready to start her and David and I agreed that if we did it it wouldn’t be until the fall so she could finish out this school year, but after this meeting today I am ready to withdraw her.  David is worried about how the stress of being home with her all day every day and trying to actually teach her is going to effect me, but I can’t say that I’m not already stressed out with school, even though she’s in public school currently.  It will be an adjustment, for all of us, but I think the most stressful part for me now is not knowing what’s going on at school.  Or getting 10 phone calls because she’s not cooperating, and then finding out she’s not cooperating because they are doing something wrong and she knows it.  She isn’t the most communicative child and so she will often just “shut down” instead of using her words, especially if she is challenged.  Of course, the challenge with that is that she can also be manipulative and will say definitively whatever needs to be said to get her way.  It’s hard to tell when she’s actually telling the truth and when she is just trying to get her way.