Appeal

Well we are being forced to appeal.  Our insurance declined Katie for the pump.  Which was fine....but she's been on the insulin injections now for almost two months and in that time she has not stabilized even a little.  Granted I don't mean stabilize like how most people think.  I expect there to be some highs and lows...but what I don't expect with her blood sugar is for Katie to go from the 200s and rising fast to then falling fast to the 100s and lower.  It's wreaking havoc on her system and making her too sick to want to do anything.  This is an active woman.  She's always on the go.  It makes me so sad to see her SO sick and not wanting to dress up, wear makeup, go out with friends or do anything.  And it's not depression- it's simply the damn numbers.  She's sick of the first thing her family asks - "What does the dexcom say" or "what are your numbers?"  And I don't blame her at all!

Needless to say- after seeing the endo in the last few weeks....they've changed her insulin again.  The lantus was doing the job but it was causing her bleeding and burns and they switched her to Levemir.  Some idea but not as flat or long lasting as Lantus.  Which works better (aka no burning or bleeding) BUT doesn't control the blood sugars as well.  In addition to this- her Humalog was changed from the kwik pen to cartridges.  This was to help her do smaller increments of insulin.  They adjusted her insulin to carb ratio too.  (More on calculating that in another post!).  All of this wordiness to say that I basically wrote with Tenney's help (Thanks Tenney!  You are a DOLL!).  I used a few sample letters I found online but entered in a bunch of information on my own.  Referenced the American Endocrinologist's Association and their recommendations.  Then if that wasn't enough I decided to look up some journals and directed them to actual tables and data that I read.  I am hoping all this plus the Dexcom data is enough to convince them that Multiple Daily Injections (MDI) therapy is not the answer for Katie and insulin therapy is.

I want a world where an artificial pancreas is available and there is a cure for Type 1 Diabetes.  An artificial pancreas is the insulin pump and CGM all rolled into one and it talks to your phone on an app.  In addition to this..it is able to calculate how much insulin automatically that your body needs based on the concentration of sugar in your blood.  That's a pretty awesome device.  It's in trials now and I hope it gets through quickly.  I really do!

Keep us in your thoughts.  I'll update here when I can.  I'm about to be in the field next week so won't be posting as much and classes start again for me in two weeks on Monday.

I'll post our appeal letter here after all is said and done for those that might want a template to use. Right now I don't want to do anything to hurt her process.  In six months we can get it and for free but to see your child so sick from highs and lows- you are willing to do anything for her.  Fingers crossed!  (Toes too!)

Travel and Diabetes

We discovered that while Katie *can* take part in all the eating out - going out of town entails...she probably shouldn't.  She's been running high ALL weekend.  We had gone up to MI to see Kev and spend some quality time together as a family.  She wasn't working so was less active but the meals we did eat out- Quaker Steak and Lube (burgers and fries and pretzels) and El Barrio (awesome, awesome mexican food in Grand Rapids!) and then Pizza at Pepperino's in downtown Grand Rapids, caused her blood sugars to raise up to over 300.

She was SO high she had trace amounts of ketones in her urine.  Yes I had to test...glad I knew how after animal phys class (We did this in lab one time).  I had her drink lots of water as when we first started- the color was a dark yellow.  By about two hours later it was more clear and the ketones were almost gone.  But she was almost as fuzzy as she is when she's low.  Thank goodness for my friend Mary.  Her son has diabetes and she has been such a huge help.  I can't even explain y'all how much it means to know that I have someone I can text to get answers.  We ended up giving her 1 extra unit of insulin after her blood sugar kept rising at 370.  We gave it with protein and that finally got her to start coming down.  So scary when it was happening.  She couldn't even think clearly at all.  We were told that diabetics are frequently arrested for appearing drunk or high.  I believe it.  Her lows and highs are like this.  It's probably why her so-called friends in HS believed the worst about her rather than tell us she was sleeping through classes, weaving and looking crazy.  She might have been diagnosed sooner if people had.

Our endo uses mychart which is AWESOME- because we can email them anytime and they will get back to us.  Plus we can page the doctor.  I just hate doing it when it seems so easy to figure things out.  But we always tell them what we tried.

When you travel- take triple the amount of everything.  It's worse than a baby traveling.  My one suitcase travel packing was tossed out the window.  We had to bring:

-extra dexcom insertion needle (in case we needed to do a site change)
-waterproof tape
-extra needles, test strips, lancets, insulin- cooler and ice for the unopened insulin
-extra snacks.  Glucose tablets for low blood sugar, hard candies, icing (great for lows), ketone strips, sharps container, carb guide, instructions for ketone strips, doctor numbers glucagon.
-food for the room for snacks including protein, fruit and veggies
and so on.  It was like bringing an extra suitcase...traveling light is a thing of the past.

I sure hope she starts to level off soon.  Keep her in your thoughts and prayers.

We are almost at $600!!!!

It's hard to believe but we are almost at $600 in our efforts to raise money for the JDRF.  We can't wait for the walk and are so excited that people are wanting to donate to our cause!  It's not too late to join in- either to walk and raise your own money or to donate to our walk!!!!!  Katie and I get to go to a captain's lunch in a week and I know she is excited to learn all she can.  We also get to hear about the latest research on Type 1 Diabetes.  Katie still has a goal of raising $5000 so please- if you haven't donated- every little bit helps.  We are going to be designing tee shirts for our team to wear...we have some more work to do on that.  And we can't wait for the walk.  It's going to be October 6th on the Lakefront here.  Should be beautiful out.  There are other ways to donate also.  You can host a party- we just did one for South Hill Designs and Thirty-One and my friend Sandy donated her commission and our rewards and we raised $210 from one little party.  If you would want to host any type of party (Pampered Chef, Tupperware, etc and so on) we can raise even more.  Thanks!!!

Insulin Change

Katie has been having super bad swings.  This is *very* hard on her body...I would assume it would be hard on anyone....but I can only attest to what I've seen with Kate.  She's been working about 30-32 hours a week and I think she's been a bit annoyed that the numbers haven't leveled off.

I suspect that it will always be a bit like this....especially with any physiological changes (illness, monthly stuff, etc and so on).  Any little change can wreak swings in her blood sugars.  What's the hardest isn't being at 70 or 200 or even 300.  It's the swinging within an hour from one to the other.  Her cells aren't ever working at 100% and she's getting exhausted.

Luckily we have a great endo and office- we had an appointment to see Dr. Kassar anyway- and so we talked it over with him.  We made the switch from Humalog 75/25 to Humalog and Lantus.  More on them below:

Humalog 75/25 is a great starting point. Humalog 75/25 is a man-made insulin that combines both intermediate acting insulin with fast-acting insulin.  It's great for a few reasons- because it only requires you to stick yourself with a needle two times a day.  And because it could be good if your body responds well to it.

For my bio/geek friends:
(From RxList:)

Chemically, insulin lispro is Lys(B28), Pro(B29) human insulin analog, created when the amino acids at positions 28 and 29 on the insulin B-chain are reversed. Insulin lispro is synthesized in a special non-pathogenic laboratory strain of Escherichia coli bacteria that has been genetically altered to produce insulin lispro. Insulin lispro protamine suspension (NPL component) is a suspension of crystals produced from combining insulin lispro and protamine sulfate under appropriate conditions for crystal formation.

Insulin lispro has the following primary structure:  Insulin lispro has the empirical formula C₂₅₇H₃₈₃N₆₅O₇₇S₆ and a molecular weight of 5808, both identical to that of human insulin.

Humalog:  This insulin is similar to the 75/25 but it's only a rapid-acting human insulin analog.  (Insulin Analog is simply an altered form of insulin that is different from what happens in nature but works like human insulin.  The amino acid sequence is genetically modified (engineered) to change its adsorption, distribution, metabolism and excretion characteristics.  This alone would not help Katie.  Which is why she now also takes Lantus.

Lantus:  It's a long-acting basal insulin analogue.  The insulin is inside microcrystals so the insulin is slow acting.  Katie takes this at night so she can have it work over a long period of time(18+ hours).  Unlike Humalog- this insulin does not peak.  It's the best long acting insulin on the market according to our doctor.  It's not cheap..but then none of the insulin out there is.

Dangers of High Blood Sugar:  Blindness, loss of limbs, kidney failure and nerve problems to name a few- these appear OVER time.  And might not appear until much later in life.

Dangers of Low Blood Sugar (under 70 mg/dl):  Seizures, unconsciousness, accidents (while driving, walking or falling) The danger of something happening to you because of the low blood sugars is low..but things that CAN happen while you are confused and lethargic and have low blood sugar are scary.  Repeated seizures can cause brain damage, you can get in a car accident while you have a low (we've already had a major accident that we suspect was a result of the undiagnosed diabetes - and it WAS scary- they could have been killed!)

It's important to control Katie's blood sugar and work on the lows first since these cause danger to her body now.  But that doesn't mean you ignore the highs.  You can't because eventually if you ignore your diabetes it will come back to bite you when you are much older.  So right now Katie is taking Humalog before every meal.  She has to calculate a correction factor and other data in order to get the right amount of insulin.  Then at night she injects the Lantus.  She has gone from two sticks a day to four.  And I suspect more will occur before we get this figured out.  We really, really hope that six months passes quickly so we can get that OmniPod insulin pump and that Humana doesn't give us anymore issues about it.  We are still researching fighting and having an external review of the pump for Katie.  But right now all of our time and energy is going into making sure her numbers get to be in a tighter range.  Especially before school starts!