We got the official call that there is no way around their black and white policy. They didn't care about the reasons why this is important now- we simply have to wait 6 months. Which is fine. She's upset but will survive..she's a fighter. It's just hard to manage with how active she is, etc. Now to wait and see about the Dexcom G4. I'm hoping that they approve that. Please..we can stand some good news. So fingers and toes crossed..I'll post an update here as soon as we know.
Wonder what they can deny next? The bright sunny lining on all this? The pump will be free by then. Late december is when the six months of starting shots it. June 26, 2013...so I don't forget. On December 26, 2013 we can put in a request for it again. Here's hoping they don't decline a 2nd time.
By then though - Obamacare kicks in and we might be changing up our policies anyway. She may choose to use Starbucks insurance...it's all a mystery right now....
Wednesday, July 10, 2013
Denial is a river in Egypt?
Yes we got the "dreaded" denial call. I don't get this. We have an 8500 deductible. So if you make us wait 6 mos (the reasoning was that she hasn't been on insulin shots long enough- but wouldn't her endo actually be the better one to make that call insurance company?) - we get the pump FREE...all supplies free, etc because by then we will most likely have maxed out our deductible (we already are 3300 into it!). But if we get it now and they approve it....we pay $1666 out of pocket. Well played insurance company- well played......
Is it a tragedy if she doesn't get it? To Katie yes- so for that reason alone I want it. But truly her numbers are all over still....we are worrying about that dreaded under 100 blood sugar. She's now working full time and her numbers are just wildly swinging. Today she was 70 at one point. And she's not really thinking clearly then. She's not wanting to take time to deal with it..because as she says she's FINE...well she's 18 and invincible- but yet she's fragile...super fragile.
Anyway- the next step after denial is a peer-to-peer- her doctor talks to the insurance doctor to explain why they want the pump and so fast. I don't know what the recourse is after if she's still denied. I don't know if because the reasoning is it hasn't been 6 mos that they will just resubmit it again in 6 mos?
And then we found out that the Dexcom Continuous Glucose Monitor (CGM) wasn't approved for sure yet either....we thought that it was since we submitted a payment plan. So now we wait for that also. Fingers crossed this one goes through. With her numbers so all over the place- this device will be crucial in seeing her trends and also for notifying her if she has high or low blood sugar- which means she will sleep better at night.
We are hoping to re-carpet the basement bedroom (where she sleeps- lost carpeting in basement in flood a few months back) to make her room better....but that won't be instantaneously.
I don't get why the insurance company is so obnoxious about things either- why deny us her test strips? I don't get it. Esp when your discount means I pay $100 over $112 or something stupid. Why does every step require four steps back? What do they think we are doing with her test strips? What do they think will be the problem with us getting a pump??
I'll keep you all posted on how things progress after the peer-to-peer. Hoping our Dr. Kassar is as persuasive as he seems!
Is it a tragedy if she doesn't get it? To Katie yes- so for that reason alone I want it. But truly her numbers are all over still....we are worrying about that dreaded under 100 blood sugar. She's now working full time and her numbers are just wildly swinging. Today she was 70 at one point. And she's not really thinking clearly then. She's not wanting to take time to deal with it..because as she says she's FINE...well she's 18 and invincible- but yet she's fragile...super fragile.
Anyway- the next step after denial is a peer-to-peer- her doctor talks to the insurance doctor to explain why they want the pump and so fast. I don't know what the recourse is after if she's still denied. I don't know if because the reasoning is it hasn't been 6 mos that they will just resubmit it again in 6 mos?
And then we found out that the Dexcom Continuous Glucose Monitor (CGM) wasn't approved for sure yet either....we thought that it was since we submitted a payment plan. So now we wait for that also. Fingers crossed this one goes through. With her numbers so all over the place- this device will be crucial in seeing her trends and also for notifying her if she has high or low blood sugar- which means she will sleep better at night.
We are hoping to re-carpet the basement bedroom (where she sleeps- lost carpeting in basement in flood a few months back) to make her room better....but that won't be instantaneously.
I don't get why the insurance company is so obnoxious about things either- why deny us her test strips? I don't get it. Esp when your discount means I pay $100 over $112 or something stupid. Why does every step require four steps back? What do they think we are doing with her test strips? What do they think will be the problem with us getting a pump??
I'll keep you all posted on how things progress after the peer-to-peer. Hoping our Dr. Kassar is as persuasive as he seems!
Tuesday, July 9, 2013
Getting organized
All I can say is- use a binder. It helped so much. The Diabetes education netted us the same handouts in some cases at the endo. The JDRF sent us a supply pack- if you are newly diagnosed- go to their site and order one. It's adorable for the kids. A backback with a teddy bear and supplies and coupons!
I sorted the binder by sections- handouts, appts, paperwork from doctor, insulin section and then one for the dietician and then the pump. I just hole punch stuff right into the binder and grab it with us for appts.
I do have a separate one for medical bills and insurance statements to reconcile. And also her prescriptions.
I sorted the binder by sections- handouts, appts, paperwork from doctor, insulin section and then one for the dietician and then the pump. I just hole punch stuff right into the binder and grab it with us for appts.
I do have a separate one for medical bills and insurance statements to reconcile. And also her prescriptions.
Monday, July 8, 2013
The Real Deal
We were told that she could swing into low blood sugars. They showed me the handout where the guy looks cranky. I was told she could get belligerent. I had no idea what the meant. But we did have the episode and it's important for other parents wondering if it's normal.
First it's laughable that I could convince a fully grown woman-child to eat a snack. HAHAHAHAHA...she's stronger than I am (I have the bruises to prove it) and I had no idea what would set her off. It turns out it was me texting to see where she was after work. For most other 18 year olds..the eye rolling is normal. What is not is a 20 min meltdown of destruction and chair throwing, kicking, punching, etc. Perhaps more frank language would have been helpful from the doctor's office. Or maybe no one wants to talk about it?
I'm not posting this out there for all to embarrass myself or my daughter. But it was scary as crap and I was so glad I was dead honest with my best friend. Who told me it was ok. She didn't judge because frankly- that was not Katie who I was dealing with. I think it was a combination of the stress of the disease combined with low blood sugar that sent her over the edge. She kept screaming she wasn't mad at the disease because that would be STUPID..she thought we were the idiots (juicier words inserted please) and she hated US. Her solution was to stop her insulin and move out. I didn't handle it well. Kev didn't either. We both were upset.
First it's laughable that I could convince a fully grown woman-child to eat a snack. HAHAHAHAHA...she's stronger than I am (I have the bruises to prove it) and I had no idea what would set her off. It turns out it was me texting to see where she was after work. For most other 18 year olds..the eye rolling is normal. What is not is a 20 min meltdown of destruction and chair throwing, kicking, punching, etc. Perhaps more frank language would have been helpful from the doctor's office. Or maybe no one wants to talk about it?
I'm not posting this out there for all to embarrass myself or my daughter. But it was scary as crap and I was so glad I was dead honest with my best friend. Who told me it was ok. She didn't judge because frankly- that was not Katie who I was dealing with. I think it was a combination of the stress of the disease combined with low blood sugar that sent her over the edge. She kept screaming she wasn't mad at the disease because that would be STUPID..she thought we were the idiots (juicier words inserted please) and she hated US. Her solution was to stop her insulin and move out. I didn't handle it well. Kev didn't either. We both were upset.
She finally got herself a snack and was able to think clearly enough to realize that she overreacted. This is the same type of outburst we were dealing with for over a year now..nice to know our sweetheart daughter didn't mean it all those times. And if she really was mad at us...maybe we will just give her a pass :)
The scary part is that for Katie- her low sugar right now is in the 100s. Her body loves being in the 200s. So as she adjusts to having insulin in her body again she will have a lower and lower threshold before she's experiencing hypoglycemia.
We are now waiting for the honeymoon period. Some kids for reasons totally not known- experience a lack of symptoms and their diabetes seems to go away. Some might not even need insulin. It's like their bodies get enough insulin that any islet (eyelet) cells left kick into gear and try and do what they are supposed to. But eventually they die off. The longest period of time this could be is a year or so.
And is it wrong of me to hope this doesn't happen? All the insulin has a shelf life of 30 days. That would be money down the drain if she ends up NOT needing it.
Some kids don't Honeymoon at all. And don't get me wrong..I say kids because I have a kid with it. But you can be diagnosed with T1D as an adult too. Rarer but not impossible!
Type 1 vs. Type 2 Diabetes and Mythbusters
One of the things I've found myself repeating over and over is that Type 1 and Type 2 diabetes are caused due to very different reasons.
Type 1 Diabetes-
IDDM (Insulin-Dependent Diabetes Mellitus) or was known as Childhood or Juvenile diabetes
This is the diabetes you hear ALL the horror stories about- people dying in their sleep...not managing it well. Insulin shots, etc. In the "olden" days (think back to Steel Magnolias) it was not as well controlled as it is today. There have been many strides made to help control this life-threatening disease. The statistic of 1 in 20 kids will die from it before the age of 18, really makes you stop and think!
Type 1 Diabetics (aka Katie's type)- make little or no insulin. Insulin is needed because it's the keys that open the lock that is the on the door to your cells. Once insulin comes along and opens this lock- glucose can be utilized by that cell. Glucose (aka Sugar) is used or burned for energy. When it sits in our blood vessels these nick the vessel walls and can cause damage to organs and other tissues. So what makes insulin? Your pancreas. When the pancreas does NOT work properly- it cannot product insulin- which in turn regulates all the glucose (sugar) in your body. So in Katie's case- her Islet (eyelet) cells cannot make insulin or do and are attack by her own body. Type 1 diabetes is an autoimmune disorder.
Type 2 Diabetes-
NIDDM (Non-Insulin Dependent Mellitus)
Prevents your body from using the insulin. Your body DOES make insulin but usually not enough. Most people with diabetes (about 95%) have type 2! This occurs in usually older, overweight people. 8 out of 10 people with type 2 diabetes are overweight. So that's why this type is considered controllable with pills and diet/exercise.
Katie cannot just change her diet/exercise and magically her pancreas will starting making insulin. Katie also cannot just manage her diabetes by taking a pill. (Yes I have gotten some messages from well meaning family/friends telling me she will be fine if she just changes her diet). It's ok because two weeks earlier I may have been one of those types of people! I had NO idea how serious type 1 Diabetes was - or I had blocked it out of my mind. I've had plenty of experience with Type 2 diabetes. It's on both sides of my family and I've dealt with it with both parents.
Myth 1- Not cured with diet and exercise (for that matter neither is type 2- it can go into remission but usually will return later in life)
Myth 2- Type 2 diabetics can't become type 1. This is simply not true..because a lot of times they WILL eventually need insulin to survive.
Myth 3- Type 1 diabetics can just take a pill. There is no effective way to give insulin in a pill. The acidic nature of the stomach would break down the pill before it could be absorbed across the stomach wall.
Myth 4- Diabetes is not contagious. I feel bad for Katie because some of her friends didn't know how to handle it. I explained that some friends just didn't know what to say to her when faced with their own mortality. There were some people who acted like they could catch it.
Symptoms of diabetes:
-Frequent urination
-Excessive hunger and thirst
-Weight loss
-Changes in behavior
Now all of this can be explained also by exercising, drinking more water, dieting, being 18 and moody, being a senior and so on and so on. We caught it early. We were lucky. We just keep repeating that to ourselves. Over and over.
If you have any questions on Katie or Type 1 diabetes- we are more than willing to talk to others!
Diabetes TrialNet- the importance of checking your other kids!
The test for Katie to see her A1c was over a $1000 USD. So it's beneficial if you have other children to sign them up for the free test from TrialNet!
This is a study being done to see if siblings or other family members carry the autoantibodies for Type 1 Diabetes. A sibling has a 10% increased risk for developing Type 1 Diabetes. I saw a blog where the woman just posted that all three of her kids now have type 1 diabetes. I had them give Mike the fasting glucose test. But this test by TrialNet is one that will re-test him yearly for no charge to see if he develops the autoantibodies. This is going to be important. In return we will answer questions and he may be asked to participate in the study. So if you have a child with Type 1 Diabetes- you or your child (cousin, nephew, grandparents, etc) may be eligible. From their site:
This is a study being done to see if siblings or other family members carry the autoantibodies for Type 1 Diabetes. A sibling has a 10% increased risk for developing Type 1 Diabetes. I saw a blog where the woman just posted that all three of her kids now have type 1 diabetes. I had them give Mike the fasting glucose test. But this test by TrialNet is one that will re-test him yearly for no charge to see if he develops the autoantibodies. This is going to be important. In return we will answer questions and he may be asked to participate in the study. So if you have a child with Type 1 Diabetes- you or your child (cousin, nephew, grandparents, etc) may be eligible. From their site:
Who is eligible?
Anyone between the ages of 1 and 45 years with a sibling, child or parent with type 1 diabetes.
Anyone between the ages of 1 and 20 with a sibling, child, parent, cousin, uncle, aunt, niece, nephew, grandparent or half-sibling with type 1 diabetes.
Hope this helps others who are trying to navigate their way through the quicksand that is Diabetes education!
Insurance
I don't know why I get surprised....I head to the CVS to get her prescription filled for test strips....not drugs we can re-sell on the street people and the insurance DECLINES her for this (out of all the other $$$$ crap we have to do or pay for). Why? Because she just got strips over two weeks ago and she should not be out yet. Ok...right except that amazingly enough- she IS. She's a newly diagnosed diabetic..whose sugars are wildly out of control...she's shaky and trying to do this for herself...
Imagine being an adult and then having to ask your Mommy or Daddy every time you need insulin or a stick for bgm (blood glucose monitoring). Right....sure....
Anyway- she did waste about 20 between not being able to get blood out (Avoid One-Touch Delica....that is by far the worst system we've seen) or because the strip had an error right out of the gate. Do you know that I want to punch a wall when I see my kid shaking and crying because she's wasted another strip that cost us a $1. And now the insurance wants to deny her the damn strips?
Oh and let's not forget- we have a deductible - $8500 that is completely out of pocket at 100% before the insurance kicks in. And her delica strips were a whopping $102 or something crazy for 100 strips..so what the heck are they complaining about???! We basically got little to no discount for these strips and then insurance declines us.
At any rate- we realized we had supplies for another meter someone had given us...(Bayer Contour) and while she loves the fast-clik of the Accu-Chek Nano- she will use that lancing device with the Bayer Contour machine for now. Why not fight it? Because we just found out that when Katie goes on the OmniPod insulin pump those are DIFFERENT test strips.
Seriously people??? Y'all can't get your act together and make sure that the strips and the meter and the pump and the cgm are all the same? Really?
I also got the call for the pump..it will be 1600 to get her started with a 30 day supply. Then a 3 month supply of pods is almost 269 a month. We are for sure going to max out that deductible soon. One can only hope. Because after the deductible is met the damn thing is FREE. Lovely. So we have to pay that and then another 1047 for the CGM and 300 a month in supplies for that. Ugh - sticker shock...everywhere we go.
They do not kid when they say that this is one of the most $$$$ diseases to manage. And yet I can't bear to see my kid stick herself endless times a day.
But hey - thanks to our insurance (which will be un-named but has human in the title!) they added stress to my day. I felt like a junkie arguing for her next fix and begging for more test strips..because obviously my daughter ran out because she's doing them for fun. Drive-up glucose testing for free at Katie's house. Morons.
Imagine being an adult and then having to ask your Mommy or Daddy every time you need insulin or a stick for bgm (blood glucose monitoring). Right....sure....
Anyway- she did waste about 20 between not being able to get blood out (Avoid One-Touch Delica....that is by far the worst system we've seen) or because the strip had an error right out of the gate. Do you know that I want to punch a wall when I see my kid shaking and crying because she's wasted another strip that cost us a $1. And now the insurance wants to deny her the damn strips?
Oh and let's not forget- we have a deductible - $8500 that is completely out of pocket at 100% before the insurance kicks in. And her delica strips were a whopping $102 or something crazy for 100 strips..so what the heck are they complaining about???! We basically got little to no discount for these strips and then insurance declines us.
At any rate- we realized we had supplies for another meter someone had given us...(Bayer Contour) and while she loves the fast-clik of the Accu-Chek Nano- she will use that lancing device with the Bayer Contour machine for now. Why not fight it? Because we just found out that when Katie goes on the OmniPod insulin pump those are DIFFERENT test strips.
Seriously people??? Y'all can't get your act together and make sure that the strips and the meter and the pump and the cgm are all the same? Really?
I also got the call for the pump..it will be 1600 to get her started with a 30 day supply. Then a 3 month supply of pods is almost 269 a month. We are for sure going to max out that deductible soon. One can only hope. Because after the deductible is met the damn thing is FREE. Lovely. So we have to pay that and then another 1047 for the CGM and 300 a month in supplies for that. Ugh - sticker shock...everywhere we go.
They do not kid when they say that this is one of the most $$$$ diseases to manage. And yet I can't bear to see my kid stick herself endless times a day.
But hey - thanks to our insurance (which will be un-named but has human in the title!) they added stress to my day. I felt like a junkie arguing for her next fix and begging for more test strips..because obviously my daughter ran out because she's doing them for fun. Drive-up glucose testing for free at Katie's house. Morons.
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